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My Nutcracker Syndrome

Aug 10, 2010 - 153 comments

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I just recently had a major surgery for something called Nutcracker Syndrome.  This Syndrome results most commonly from the compression of the left renal vein between the abdominal aorta (AA) and superior mesenteric artery (SMA), although other variants exist.[1][2] The name derives from the fact that, in the sagittal view, the SMA and AA (with some imagination) appear to be a nutcracker crushing a nut (the renal vein). I was originally Diagnosed with Pelvic Congestion after complaining for many years of Chronic pelvic pain, left sided flank pain, lower back, and lower limbs.  

My husband and I were also trying to conceive for 6 years and all the doctors could tell me was that I had a great looking uterus.  I did, however have low ovarian reserve for someone my age.  They finally listened to my pleas of pain in my pelvic and did a pelvic MRI on me only to discover I had Pelvic Congestion.  I was dumbfounded.  Everything I had read stated that only woman who have had multiple pregnancies develop this syndrome.  After a failed IVF, and a couple attempts at chlomid, and folistm, I was still childless.  My doctor then proceeded to give me the Pelvic Congestion Diagnosis and sent me away telling me to keep trying.  I was so very unsatisfied, so I did my own research.  I found Nutcracker Syndrome and was convinced that I had it.  You see, since the renal vein is being compressed, not enough blood flows through it to your heart, so the body compensates by sending the blood downward through the pelvic creating the veriscosities and causing chronic to mild pain. Anyway, although the doctor assured me that I would not have this syndrome, he did listen to my demands to check for it, and I did have it.

I just want to warn all of the young woman who may be wrongly diagnosed to ask the doctors that if they are already going to do an MRI on the pelvic, then, to also include the kidneys to check for Nutcracker. I think it should be a standard procedure when a woman comes in complaining of chronic pelvic pain....

I am attaching a picture of my surgery scar to correct my Nutcracker Syndrome and I would also like to state that although I just had my surgery, my pelvic pain has improved dramatically.

I hope this helps someone!


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by Kellyh518, Aug 11, 2010
OH MY GOD!  It was like I was reading my own story when I read yours.  I am 45 and have been diagnosed with Nutcracker Syndrome and pelvic congestion after years of pain and tons of tests.  The pain in my abdomin and left side has gotten progressively worse over the last two months.  I am exhausted, am constantly grabbing my left side because of the pain and it has started to move to my hip and sometimes my back.  I have a high tolerance for pain but have been crying in pain these past few days.  I feel like I'm carrying around a baby and I'm not even pregnant.  I've seen a GYN oncologist, interventional radiologist, vascular surgeon, nephrologist...you name it I've seen them.  But, they are telling me there is risk to inserting a coil into my left ovarian vein because it may not stay in place.  The surgery to correct the Nutcracker appears to be so involved the vascular surgeon isn't even recommending it.  Did you have a venogram done to help diagnose it or just the MRI?  Where did you have the surgery?  I am grateful someone like you posted this online.  If you are ever up to it, I would love to know more about your symptoms, surgery, etc. and maybe email each other.  My email is ***@****.    I hope you are feeling back to yourself soon!  

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by lymeball, Aug 12, 2010
Wow!!  So I'm not the only one!!! I am so glad you wrote!

I asked for an MRI to check specifically for Nutcracker Syndrome.  When it was confirmed that I had it, I asked another well known doctor where I could go, and he gave me the name of a vascular surgeon in San Diego, named Dr. Ralf Dilley.   I am currently in Japan, so my MRI was done here.  When I contacted Dr. Dilley, I sent him the images from the MRI and he asked me to do a venogram with pressures on both sides of the renal vein.  It was confirmed that only a few drops of blood were flowing through, meaning that I had a very compressed vein.  Dr. Dilley told me to fly down asap for surgery.  He then preformed the surgery in which he rerouted the vein to the vena cava and relieved the compression, hence my huge scar.  He did not want to put a coil in my left ovarian vein, nor did he want to put a stent in my renal vein because he was hoping to restore my fertility.  He said that he is sure that with the blood flowing correctly through my renal vein into my vena cava, it will no longer flow as much into my left ovarian vein.  It's true!!  I have way less pelvic pain and am able to climb a flight of stairs without feeling a heavy pulling in my uterus.  I am also able to walk a lot- I still get a little pain when I walk all day, but at least I'm able to walk all day without the torturous pain I would have before.  I actually live in San Diego, but my husband is playing baseball in Japan, so we are here for the baseball season.  I believe your email got taken out of your post because this website doesn't allow for us to write our info.  I have a blog because unfortunately, I also have lyme disease.  Since I can't give my blog address, I will hint it, lol, hoping you will get it.  It's like my profile name "lymeball,"  but then it has the ".com" after it.  You will see is a "contact me" tab with my info, and email. lol!!!   Oh, wait, my email is the same as my profile name, but it's "gmail."   I am concerned about your doctors coiling your ovarian vein without opening your renal vein first.  Where do you live?  I would love to give you as much information as I can give you.  I feel it is such a blessing that we found each other being this such a rare disorder, although, I do know it goes highly misdiagnosed!!!!!!!!

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by rono1rono, Aug 17, 2010
My daughter developed the same pains you both describe, in her early twenties. It took several visits over months to be diagnosed with nutcracker syndrome. Her local vascular sugeion referred her to a Dr. Villavicencio, in Bethesda, MD. She ended up undergoing a procedure to have a stent put in place at the point of compression. It provided relief, but the pain slowly returned in less than a year. We were bummed. It's been about five years and she lives with it. Her baseline pain level is about a 3 or 4, she says. We found a Dr. Andrew Kurlinsky at the Mayo Clinic in Rochester, MN, and my daughter may fly there for a consult when she can. I wish both of you well. Thanks for your advice. I'll share this with my daughter.

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by lymeball, Aug 18, 2010
Hey,
Thank you for sharing your story.  I just wanted to comment that my doctor chose not to put a stent in my renal vein because according to him, sometimes it fails to stay in place causing pain in the future.  That's why you see my huge scar.  He completely opened me up and rerouted my vein to ensure there would never be compression.  He was also hoping I would be able to have children.  Pregnancy can definitely move the stent.  My Doctor's name is Dr. Ralph Dilley, located in La Jolla, California at the Scripps Hospital.  He knows what he is doing.  I am 29 years old and had been suffering from pain since I was a child.  It got worse when I got my period, and then even worse still after my husband and I did invitro and other forms of fertility treatments.  We were unaware of my condition.  Good luck to your daughter.  I will pray she finds relief from her pain.
Sincerely,
Cristina

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by lucylu38, Aug 30, 2010
Hi lymeball,

I posted about nutcracker syndrome, which after 8 months the docs finally saw I had, along with pelvic congestion. I had a venogram done 10 days ago and will meet the vascular surgeon this week to go over what he can do. I remember him mentioning a stent in the left renal vein and embolization. I read your post and saw your scar - wow!!! I was not prepared for that - I'm hoping to not have the extent of surgery you had - I wasn't scared before, but seeing what you went through, I am now. I have 4 kids (ages 11,9,8, and 4) and don't know how quick the recovery would be with the surgery you had. Hope you feel better now. Good luck to your husband and his baseball dreams. I'm from Chicago and love the White Sox. Hopefully your husband will make it to the big leagues someday.
Sincerely,
Lori

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by lymeball, Sep 01, 2010
Hey!!  LOL!  My hubby was in the minors for a looong time, but he did have the opportunity to play MLB for the San Diego Padres for the past two years a long side his brother.  It was incredible.  Now, he is playing with a team in Japan called the Yomiuri Giants.  I can't wait to get home!!  Sorry, you mentioned baseball, and I tend to get excited!  LOL!  

Anyway, I am so sorry for your pain!  This is painful!  The doctor did not want to put a stent in my vein because there tends to be problems with them moving sometimes.  I still wanted to have children, so he thought this was the best route for me.  My recovery was pretty fast.  I was 5 days in total at the Hospital, then I was walking around, even went shopping a week after I got home from the hospital.  I couldn't carry anything heavy for 6 weeks though.  I think you may want to ask the doctor what the probabilities are for the stent to move.  That can be a pain in the behind...lol

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by lucylu38, Sep 01, 2010
Thanks so much for replying. I love baseball too. Just listened to White Sox win on the way home. Now Cubs are on tv while I have a heating pad on my parts for relief - they're actually winning, but probably not for long.  

I was at doc this afternoon to look at my venogram on tape - very interesting-made me a little dizzy though knowing that was going on inside me. I brought in copies of your journal and the picture of your scar - he said he could give me a scar like that if I wanted, but really wouldn't need to. He said he would like to put a stent in the left renal vein and put coils in some of the larger stretched pelvic veins to clot them closed so no more blood can flow through them. I asked if he would stitch the stent into my vein so it wouldn't move, he said no, where he is going to place it, it shouldn't move. I'm praying he's right.  His nurse is going to check with my insurance before she can set up a date for the procedure - she said the insurance companies don't really recognize this issue with women as much as they do men. I think I'd pay for it on my own for the next 50 years if I had to. Having pain there is so ridiculous - I can't wait until it's gone.

The doc said I also have what looks like another nutcracked vein in my left leg which may require a stent in the future, but he wants to do this renal stent first - I'd rather get it over with all at once.  Doc said recovery will be up to 3 weeks - a lot of back pain while the blood finds another way back to the heart once the pelvic veins are coiled. I'm not looking forward to that, but will endure.

Good Luck with your trying to have a baby. I went through fertility after 2 miscarriages when I was in my early 20s; through AIHS - artificial insemination with husbands sperm, I conceived and had our 1st son 11 years ago; then I had thyroid surgery, and got pregnant on my own with son #2, then quickly with a girl, and then another boy a few years later.Hang in there. Wanting a baby so badly, especially after everyone around you seems to get pregnant so easily, is frustrating and heartbreaking. Know that you're not alone and keep at it.

As for baseball, why did your husband leave the  Padres for Japan's league? Just curious. Hope he's enjoying it and hope you're able to enjoy it with him.  Good luck and thanks for your story - glad to know someone else in this world can relate - my family is probably so tired of hearing about it - even my 4 year old knows all about it - hope he doesn't bring words like pelvic pain and urethra and vaginal muscles to school - haha.

Thanks again,
Lori D.

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by lymeball, Sep 01, 2010
Hi again!  LOL, you are so funny!  I can imagine your son doing that!  My hubby was a utility man for the Padres and had a really great first year because Iguchi (their second baseman at the time) got hurt.  He was able to play everyday and produce numbers.  Last year he didn't get the chance to play much at all, so his numbers suffered.  It's hard to come cold off the bench and get hits.  He then had a very good game, but bad luck struck him hard in the head by a 93 MPH (I think around 93 MPH) fast ball, so he  was on the DL for like a month or longer.  He had benign positional vertigo.  When the baseball year ended, they took him off the forty man roster.  He could have stayed or gone to play with LA Dodgers, or Rockies, both offered him big league camp and a chance to make the team, but it wasn't concrete that he would make the MLB team and he would have had to go back to AAA making minor league salary. We were starting a business at the time and had way too many bills to pay! LOL!
Then,  he was offered a very good contract, better than MLB to play everyday for the Yomiuri Giants who are like the Yankees in Japan.  It's the best team in Japan.  He didn't want to take the chance of going back to AAA when he had such a great guaranteed contract.  He kinda regrets it though because he was never sent down to AAA and wishes he would have given it another shot. :(  His brother, on the other hand, still plays for the Padres.  He is their first baseman...

Anyway, They wanted to coil my left ovarian vein, but decided not to because they didn't want me to lose the fertility on my left ovary.  Do you have flank pain and radiating shoulder pain as well?  Is it hard for you to climb stairs.  How were your pregnancies with the Nutcracker?  Was it excruciating pain?  Did you have natural births meaning no, C-sections.   I always wonder about that because of the veracose veins along the uterus.  Did you have pelvic pain before your pregnancies?  Sorry so many questions.  Also, was your renal vein really smashed, like was there any blood flowing through it at all?  Mine was bad.  I have virtually no blood flowing through it.  

OMG!  I did not know you could have nutcracker veins in your legs!  I am going to make sure my doc check for this when I get back to San Diego!  The venogram is torture!  I felt the stupid tube going through my body, did you?  I am so happy to meet you!  I could never talk to anyone who understood what I was going through.  You are so lucky you got your diagnosis.  I had to diagnose myself because doctors kept pushing me away and telling me I was fine.  No one listened to me.  I had my venogram done in Japan!  I had told my Japanese doctor to check me for Nutcracker!  My husband thought I was crazy!  I had to fly back to SD to get the surgery.  My doctor in Japan told me that putting a stent in your vein is very similar to a venogram, so if that was easy for you, you will be fine! :)



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by lymeball, Sep 01, 2010
Oh, and PS. My insurance did cover my operation.

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by lucylu38, Sep 02, 2010
Thanks for your reply. It is great to chat with someone else going through the same thing. Nobody I know has ever heard about it - they all thought I was crazy, even the urologist and gynecologist, they couldn't find anything wrong, so they assumed it was just my imagination. Yeah right!!! I know what pain feels like, why would I make it up?  As for having kids, I had all 4 vaginally, good birthing hips I guess. I had good pregnancies, all 3 boys were 6 pound and some ounces, and our daughter was 7 1/2 pounds - hog compared to her bros. She was born with several heart problems and had open heart surgery at 3 weeks old - she's 8 now and perfect - other than her scars, you'd never know she had any problems. Thank God.

A few summers ago, we took a trip to Michigan, and I woke up on the last day peeing blood clots. Gross, I know. I got home, called the gynecologist and he put me on antibiotics, then urged me to go to a urologist. Clots and pain went away in a few days, so I assumed it was a UTI and the meds took care of it. I did go see a urologist shortly after and he acted like it was no big deal to pee blood clots - yeah that's normal, right?  After about 6-7 months, I had the same thing, took antibiotics, was ok in a few days. Then again 6 and 12 months later, finally had a doctor test my urine and found no infection - puzzling - but they gave me antibiotics again. Was ok for a while, then January this year and almost every day since the pain has remained. Started with the gynecologist, then the urologist, had lots of tests (ultrasounds in and out, CT scans, cystoscopy (OUCH), etc.).  Got tired of being passed back and forth from one doc to another, went to my general doc from Loyola, was referred to another doc there, a urogynecologist, saw her and she said right away I have myofascial pelvic pain and sent me for pelvic floor therapy (this was back in April, 2010). So I went for therapy, had the therapist focus on strectching my muscles inside (ewww I know) and out. Felt ok 5 of 7 days a week as long as I saw her once a week. Missed a session because of vacation, woke up 3 am in terrible pain, couldn't get doc to call in any pain meds (was taking tramadol) to Michigan because she was out of the country. Suffered til we came home and got back to therapy, but was like starting all over again. Still in therapy once a week, but why my muscles are so tight and contracted I don't know. Therapist suggested Dr. John White from Niles, IL; he's a vascular surgeon who is studying pelvic pain in women. In August, 2010, I brought him the CT scan CD that I had done in March, 2010, and he immediately saw I had Pelvic Congestion Syndrome, and set up the venogram to confirm the Nutcracker syndrome. Don't understand why a male vascular surgeon would be able to figure this out so quickly compared to a gynecologist or a urologist who look at these private parts every day!

As for my pain, it is all in my pelvic area, feels like my urethra is being squeezed. I never had left flank pain, like where my kidney is, nor the shoulder pain. At first the pain would start later morning, early afternoon and last all day, getting progressively worse until I went to bed. Pain levels often reached a 10 (on 1-10 scale) so bad I'd feel like my life was passing me by and I couldn't do a thing about it - missed kids' school activities and baseball games because I just couldn't sit long enough without excruciating pain and always wanted to be near a bathroom just in case.  

My renal vein was pretty squished, but a little blood was able to flow through. Can't wait to see the difference with the stent. Surprised to see how much blood fell right into my pelvic area though. Some blood was able to move across the region and get picked up by the right side and carried back up to the heart, but not all of it.

I read parts of your blog about lyme disease; how did you catch that? Don't you feel like hey I already have one problem, why am I getting another with the nutcracker, too? And the trials of wanting to get pregnant - wow - it's a lot to handle. But you seem so positive and strong.  Keep moving forward and stay faithful.

Good luck with your lyme disease and nutcracker recovery and baby hopes and baseball dreams and .....

Thanks again. Great talking to you. Hang in there.

Sincerely,
Lori D.

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by lymeball, Sep 03, 2010
Hey Lori,
Thank you so much for your reply.  It's really nice to hear someone else's story.  I really appreciate you taking the time to read some of my blog.  I have had many trials lately and I do try and stay positive, but there are some days that I break down.  I wonder about my uncertain future a lot.  Thankfully, because I have God in my life, I feel I have the biggest support team ever, meaning my husband and GOD.  I don't know why He chose to let this happen to me, but I do feel that I can only do my best with what I have.  I do feel I am making progress though.  I think I am just more grateful that after soooo may years of not knowing why I was deteriorating, I finally know why, and that in itself was an answered prayer.  God had to give me the strength to do all the research my self.  I often ask myself, "Why didn't I just listen to all the doctors?"  I could have stopped with the Pelvic congestion, and thyroid problem diagnosis, but it's like since  I was a child, I remembered I had read about Lyme Disease in a book, and also Nutcracker Syndrome kept popping out at me online.  It's like God was telling me...LOL
Honestly I feel that often times suffering builds character, and I know I have grown a lot during this whole process, and I can only thank God for that.  I will be praying for you Lori...

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by lucylu38, Sep 03, 2010
Hi Again,

Are you kidding me??? You have thyroid problems, too???? I think you're really a younger version of me.  When I was going through fertility, you know how many blood tests the docs run, well, they found I had a hyperactive thyroid. I never knew anything was wrong, I was always thin, but just thought I was lucky. I was on different meds for a while, then had my 1st son, and when he was only 6 months old, I had to have my thyroid removed. A pretty long surgery, and a very painful and exhausting recovery. Because the docs cut my neck open, even though it was stitched up, it always felt like my head was going to tip backwards and fall right off my body (I always pictured it happening like a cartoon - not funny though).  I couldn't even pick up my baby for a couple of weeks. My Mom would come during the day to take care of him, and then my husband would help when he got home from work. But I think that fixing the thyroid problem helped my fertility issues and I was able to get pregnant on my own.  I know God is at work in each of our lives, we just don't always listen and follow. I hope He doesn't get mad when we ask why, life just gets frustrating sometimes. And when we break down and know how out of control these issues are for us, then it's time again to let God take over.  Try to be patient; I know a lot easier said than done, right?  My family, and especially my husband and even the kids, have been very supportive and understanding of my pain and the moodiness that goes along with not feeling great. I hope you have a similar support system in place; it helps to know you're not alone.

Stay strong and my prayers are with you, too. Get well and keep your dreams alive!

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by lymeball, Sep 03, 2010
Lori,
My thyroid problem was because of the Lyme disease.  The Lyme was messing my whole system up, but the doctors wouldn't test me for lyme.  They told me I was feeling bad because my thyroid was off and that once I got that taken care, they said I should start to feel normal again.  Well I didn't feel normal at all, but was starting to get worse.  Anyway, pretty crazy how we both have so much in common.  Thank you so much for your support as well.  I'm glad I met you! :)
Sincerely,
Cristina Gonzalez

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by lucylu38, Sep 04, 2010
Hi Cristina,

I can't believe how many questions are out there about pelvic congestion and nutcracker. Every time I do a search for it, there are so many more women looking for answers, and not enough answers to be found.  I recently found that Loyola has a doc that I saw back in April who has started a pelvic pain clinic, but I don't think she has a clue. The article I read about it referred a lot to emotional dealings, and how to manage the pain, rather than searching out the actual cause of the pain. It also talked about sending women to psychologists - that's not what I want to hear - that the doc thinks I'm crazy for feeling pain, so talking about it will make the pain go away?? I don't think so.  I haven't set my appointment with that doc yet, but I will after my surgery; I can't wait to fill her in on what she could be looking for.  I'm still waiting for the doc's office to call and let me know about my insurance covering the procedures. I hope it's soon; I'm Ready!!!

I'm watching White Sox play Red Sox now; White Sox up 3-1. Do you get to go to all of your husband's games or just some?? Does he travel throughout Japan or stay close to one area?? Do you go on the road with him??  I love baseball and find it interesting how the players' relationships are off the field. I'm sure it can't be easy.  Hopefully he's extra supportive when you're together, and even when you're not. Do you have any other family with you in Japan?? If not, who helps you out if your husband's playing ball? That's got to be hard to be far from home.

Good Luck and Get Well,
Lori

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by lymeball, Sep 05, 2010
Emotional, psychological, ya I heard all of that none sense myself.  It's just so sad how these docs are so quick to judge someone because they can't figure out what's wrong with them.  If they just spent a tiny bit of time researching, they could figure it out!!  It drives me crazy.  

White Sox Game!!   There were a million trade rumors that my brother in law was going to go play for them.  Those are over now.  Next year is his last year with the Padres, then who knows, he may be headed down your way, LOL!

To answer your questions, Yes, I do go on some road trips.  As a matter of fact, I just came back from a city called Nagoya, Japan.  It does get lonely when he's not around though.  I don't have any family here.  It's sooooo hard because the wives don't go to any games and even if they did, I wouldn't be able to speak to them.  I really need to learn Japanese.  I only know one other foreign wife, but they are in the minors in Japan, so I don't get to see her much.  I am going CRAZY!!  LOL!  I really took those two years that Edgar, my husband, was with the Padres for granted.  It was so amazing because my sister in law is one of my best friends and we would travel all the time together.  In the States MLB teams are really family friendly even letting us fly on the team plain at times, but here, if I want to go on a road trip, I can't use the hotel room that the team provides for my husband.  We have to purchase another room ourselves and his room just stays empty.  I shouldn't complain though, it's just the language barrier really.  The people are super friendly and usually go out of the way to help you.  Do you have a facebook account?  We can be friends if you do and you can see the pics of the japanese baseball, lol!  The email you can look me up on is: acgonzalez  then it's the @ then, cox.net    Sorry I have to do it this way or they will remove my email. :)  Please send me a message stating it's you that I met here on Med Help.  :)  Then we can keep in touch. :)

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by lucylu38, Sep 06, 2010
Sorry I'm not on facebook; with 4 kids I don't think I have time for it. Everyone says they spend hours on it everyday.  I'll try emailing you next time. I hope your brother in law does come this way, and your husband, too. Then maybe we could meet (and both be painfree at the time - hopefully). How long has it been since your surgery and how are you feeling now? I'm still waiting to hear from the nurse about my insurance, so hopefully I can have surgery in the next couple of weeks. I am also on a site that is ************ then the dot org and I put in urethral pain with no infection. On it I am "IT HURTS DOWN THERE"  I just read about a girl who's trying her own herbal treatments and it's very extensive. I commented to her but haven't heard back yet. It's amazing the things we will try to just get a day or two without the terrible pain. As long as I go to therapy once a week, I can have 3,4,or 5 good days, but I know that a bad day is just waiting to happen, so I don't ever get too excited. I do enjoy the lower or tolerable pain days, as does my husband : )  but I know it won't last for long.

Hope all is going well and getting better for you. Hope the Giants are doing well. And I hope you're keeping busy while your husband's playing ball.

Good Luck and Get Well,
Lori

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by lucylu38, Sep 06, 2010
Oh I see they blocked out the site name. How about steady and then health with the dot org?

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by lymeball, Sep 06, 2010
LOL, So sorry your not on Facebook.  Yes, some people spend a lot of time on it, but I never did.  Now that I am in Japan I spend more time on it, but it still doesn't consume me like it does some crazy people, LOL!  I use it to keep in touch with friends, see what's going on in their lives, and to see the pictures they post.  Really, its like a really fancy email because you can send private, or public messages back and forth like what we have been doing.  It doesn't even take that long to make an account.  I totally recommend it. :)  

It's been about 2 months since the surgery.  I do feel a lot better, but now I am noticing that my pelvic area isn't hurting that bad, but my legs are hurting a little more that they used to.  I am not in a lot of pain.  I can still exercise and do a lot of things, so I have improved a lot.  What I don't like is that I can still feel my ovarian vein throbbing at times.  I also think I have a hernia. :(  I will see about all of this when I get back to the states and see my doc.  I may have to coil that vein up.  Hopefully it will get better on it's own. Well, you have to let me know how your surgery goes.  I will be praying everything goes well for you...
Love,
Cristina

PS. I think they take the addresses out when the @ sign is next to the actual address. :)

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by lucylu38, Sep 15, 2010
Hi There:
Sorry it's been so long. Still haven't heard from nurse about scheduling surgery - not sure what the holdup is on my insurance. Really stinks that docs finally know what is wrong and have a way to fix it, but now I'm not even sure if I can get the surgery. It's been 2 weeks since I met with Dr. White, and I thought i would have a date for sure by now, but just waiting.

Anyway, hope baseball's good in your part of the world. White Sox have taken an unfortunate dive - they're letting Minnesota run away with the division - so sad to watch.

I'll let you know as soon as my surgery is scheduled - soon I hope. Therapy once a week keeps the pain levels down, but knowing there's a chance at an ultimate cure, I can't wait!

Hope all is well and getting better with you. Take care and I hope to chat soon with good news.

Have a great weekend,
Lori D.

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by internetcruiser, Sep 16, 2010
Wow...there are so many of us looking for a resolution to our pain.  I really enjoyed reading all the information here.  Thank you Cristina and everyone.  I have PCS and I have been battling so called invisible kidney issues for years since the Pelvic Pain began with me.  I just got my PCS diagnosis a few months ago.  I have pain going from side of my left kidney and goes straight down to the left ovary and hurts!!!  I have been treated repeatedly for possible kidney infections because I always have blood in my urine and flank pain despite the fact there is no bacteria in my urine.  So your news is promising.  thanks so much for spreading the word here!!

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by lymeball, Sep 17, 2010
Wow internetcruiser,
The left side sure sounds like a big red flag to me.  Good luck to you and I am so happy that we can help.  Please let us know if that was the issue for you.
Good health
Cristina

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by lucylu38, Sep 20, 2010
Hi Gals:

Finally heard from nurse today (19 days later) and she said my insurance okayed the procedure. Now I'm just waiting for her to schedule it (probably after 3rd of October, since we are going to Cincinnati for my husband's softball tournament that weekend). Thanks for your support. Stay Well.

Hoping for Good Results,
Lori D.

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by lymeball, Sep 20, 2010
YAY!!!  How amazing!  I am so happy for you!  Please let me know how your surgery went.  How cool that your hubby plays softball!  Have fun in Cincinnati! :)
Cristina Gonzalez

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by lucylu38, Sep 21, 2010
Hi:
Just heard from the nurse today - my surgery is scheduled for October 3rd - only two weeks to go. I am excited, but also anxious about the pain afterwards - doc said lots of lower back pain for up to 3 weeks. We'll see, maybe I'll get lucky and feel better right away.

Hope all is fine with all you gals out there. Hey, lymeball, how's baseball going there on the other side of the world???

Take care, I'll let you all know how it goes. Hang in There and Best wishes for some OK days,
Lori D.

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by lucylu38, Oct 05, 2010
Hi Again:

Had my surgery this morning - went well according to docs. Doc put a stent in my left renal vein to hold it open, coiled and embolized several pelvic varicose veins, and completely sealed up my left gonadal vein. My groin area where they went in feels better than it did after the venogram. Most of the pain I have now is lower back pain - I'm not sure if it's from laying flat for 2 hours after the procedure or if it's from the blood trying to find it's way to open veins. Overall though I feel pretty good. I'm just praying that this solves the pelvic pain problem. The doc said that he would have liked to do the procedure in 2 steps - the first to coil the varicose veins and the 2nd to put the stent in - I'm glad he decided to agree with me to do both at the same time - the less time in the hospital the better. The doc said that tomorrow would probably be my worst day, so I'll let you know how it goes. Thanks for all of your thoughts and prayers. I'll keep them up for you, too.

have a great week,
Lori D.

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by lymeball, Oct 05, 2010
Oh Lori, that's wonderful!  I hope you recover fast.  I wonder why I never got my pelvic varicose veins embolized.  I am going to ask when I get back because I do have lower back pain.  My pain is not as bad as it used to be though.  Well, I will be praying for your quick recovery.  Thank you for keeping me in the loop of things.  I'm glad we have each other to talk to...
Love,
Cristina

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by internetcruiser, Oct 06, 2010
Wow..amazing details here...I also have Thyroid disease as well as PCS and possible/likely Nutcracker.  My insurance just authorized a venogram to look for Nutcracker and IR as well for PCS, my PCS was found during ovarian diagnostic surgery.  I have not posted cause I am not fixed yet and I am in pain that is about a 10, the pain is so bad I actually won't get up and walk to go to the doctor to get it handled.  I just have to went til the pain settles down and then go quickly while it doesn't hurt!!!  I am so glad to meet you guys here!

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by lymeball, Oct 06, 2010
Yay, internetcruiser!  I am so glad you are getting answers!  Did you end up telling the docs about the left sided pain?  I am about to get my period and realized that I still have some left sided pain, even after surgery for nutcracker syndrome.  BUG!  I think it's because they didn't coil my Left ovarian vein, or embolize my pelvic varicose veins.  I think I need to go back to the doctors when I get back from Japan.  Overall, I am better, but I still think I need to get rid of the varicose veins!!!!  If you do have Nutcracker make sure that when they fix it, they also fix the pelvic congestion by embolizing the varicose veins please...

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by lucylu38, Oct 06, 2010
Hi Lymeball:

Besides the lower back pain all day (which I expected) i unfortunately am having the same pelvic pain too (pain level 6-7) - I am hoping it goes away soon or I'm afraid i will be back at square 1 (and down about $35,000).  I'm watching playoff baseball now (Minnesota vs. Yankees- game 1) then I'll be going to bed. I hope I wake with a better outlook tomorrow - just sad now and wishing for the cure for pelvic pain to set in soon. I know the surgery was just yesterday, so i guess i shouldn't have expected a miracle so soon, but I guess I was counting on it. We'll see how tomorrow goes.

How's baseball in Japan?? Is it playoff time yet like it is here??? Good luck and I'll chat soon, hopefully with more positive news.

Thanks for the support,
Lori

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by sue_1234, Oct 07, 2010
Hi Everyone!

I've been reading alot in the last few days about NCS.  The reason is, I have had a problem for the last 4 years where I get lightheaded standing up--when this happens, my heart is racing.  It is called Postural Orthostatic Tachycardia Syndrome. It is a very life-limiting problem, as I can't shop or go places that require being uprightU for more than about 8 minutes.   Now, a doctor that is a specialist in POTS has found a few of his patients have NCS!

So, I was reading up on it, and thinking besides my POTS, it might actually explain another issue I have.  For the last couple of years, I have a problem sitting straight up in a chair.  When I do, it feels like I am being "stangled" around my waist(pants are LOOSE!).  When this happens, I start getting the fast heart rate, and with more time, feel lightheaded.  Then I have to lie down.  BUT, I can't lie on my back, as it feels like when I sit straight up, so I either half recline or lie on either side.

I know that was all confusing, but does that ring a bell with any of you?  I don't know if I have pelvic congestion right now, but 20 years ago when I was pregnant for all 3 of my kids, I had varicose veins really bad in my "private" area.  

I don't have any pain, but even sitting, I am more comfortable leaning to the right.  I have often told the doctors that my circulation is getting cut off in my abdomen somehow, but really wonder about NCS since I've read up on it!

Thanks!

Lymeball-I was born in Japan(to American parents), somewhere at Yokota(?), where there is/was an Air Force base.  My parents always talked about how nice it was over there.

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by lucylu38, Oct 07, 2010
Hi Sue 1234:

So sorry to hear of your problems; until now, I'd never heard of NCS. In regards to the pelvic congestion, you might want to be checked for it next time at your doctor's appointment - I had it confirmed through a CT scan - I don't have varicose veins on the outside of my "parts" not that I can see anyway, but lots did show up on the CT scan all around the pelvic area.  I just had surgery to put a stent in for nutcracker and the doc also coiled/embolized several of these varicose veins - I am still having the pelvic pain (I was hoping for immediate results as my surgery was just 2 days ago) but no such luck - I think it will take a few weeks until the blood flow finds other routes to use. My back pain has decreased though a little today, so that is good news.

Like I've said in my earlier posts, use the internet to your advantage - research as much as you can and print what you think is useful info and bring it with to your doctor. I use to think the doctors knew everything, now I'm not so sure. We have so much more information available to us, we really need to use it. Unfortunately, doing our own digging doesn't cut the costs of our doctor visits - I just had a regular check up with my general doc a few weeks ago; it use to cost me $100 per well check visit, last time it was up to $235 - wow, how ridiculous, and I didn't even have to take my clothes off - it was just a chat with the doc.

Good luck to you, and keep us posted on your research and check ups. Take care and know that we'll all be keeping you in our thoughts and prayers.

Sincerely,
Lori D.

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by sue_1234, Oct 07, 2010
Lori,

I'm sorry--I wrote NCS to stand for Nutcracker Syndrome!  I think I read it like that in someone's post on the medhelp forum and just used it.

Did you ever get lightheaded or have a racing heart because of the nutcracker syndrome?

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by lucylu38, Oct 07, 2010
Hi again:

I actually looked up NCS and it seemed like it could have been related to your POTS; I don't recall ever having those symptoms of lightheadedness or a racing heart. I do have nutcracker (or should I say I did before Tuesdays surgery to put the stent in- much less invasive than what lymeball had). I'm hoping for a speedy and full recovery. And I hope the same for you too.

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by sue_1234, Oct 08, 2010
Thank you Lori for your response.  I hope you are healing well and all is successful!

By the way, I have a dog that is named Lucy, and I just end up calling her Lucy Lou!

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by lucylu38, Oct 08, 2010
My puppy black lab is named Lucy too. The pic I use is her when she was 2 months old. Now she's 9 months old and just finished her 1st heat cycle - thank God. We also have a male chocolate lab (he's 3) and we plan on breeding them when she's at least 2. So it was very traumatic for Jake (the choc. lab) when we had to keep them separated for almost 3 weeks. He howled all day and all night - I'm sure the neighbors loved that. Sometimes we call her LucyLu, but since she still poops in her cage at night every once in a while, the kids just call her LucyPoo!!!

Well, today, my back pain is slightly worse than yesterday,which I can deal with, but my "parts" are still hurting - I sure hope that goes away soon. I'm going to wait until a week has passed from my surgery to call the doc. I know I have to give it time, it just is depressing to still be in pain.

Take care of yourself, and keep us posted on your progress.

Have a great weekend,
Lori

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by lucylu38, Oct 11, 2010
Hey Lymeball, you ok? Haven't heard from you in a while.

How long after your surgery did you notice the pelvic pain lessened??? I'm hoping soon.

How's baseball???? I see San Francisco went up on the Braves 2 games to 1. Do you root for them too since they're in your state, or is it like the Cubs and Sox fans here - love one, hate the other????

Hope all is well, take care,
Lori

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by lymeball, Oct 12, 2010
Hey Lori,
No we root for our state.  The Padres did an amazing job and we are so proud of Adrian, but now we root for our, "neck of the woods!!"  We are okay, we are in the Playoffs.  We are actually waiting for them to start on Friday, or Saturday.  I can't remember which day Edgar said...  Here the Playoffs are only 3 days long instead of 7 like the US, so who ever wins goes on.  If we lose, we get to go home.  That is in about a week from now.  I am confused about my Pelvic congestion.  I was just on my period and it was still pretty bad.  I do know it has gotten better since my surgery, but I never had my varicose veins removed from my pelvic area, so I think that is what is causing the problem.  When I get back to the states, I am going to go to the Doc and see what I can do.  I just can't wait to go home....

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by sue_1234, Oct 12, 2010
Lymeball, I don't know if you saw my first post above with my symptoms, but was curious if you had any problems with heart racing or blood pressure issues with your Nutcracker Syndrome.  Lori told me she did not.  I have read in a few medical journals that besides the pelvic pain and blood in urine, some patients have actually had chest pain, heart racing and related symptoms.  So, you two are the only people I can find with this, so that's why I am here asking about symptoms!  Thanks for any info.

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by lymeball, Oct 15, 2010
Hey Sue,
I always had low blood pressure, but it was the lowest "Normal."  I would often feel light headed if I stood up to fast as well.  Sometimes (not all the time) I would faint.  Yes, I did have heart racing as well, but I didn't know if it was my lyme disease, or thyroid that caused that.  It's hard to tell with me because I also have these other ailments.  I have got my lyme, thyroid, and nutcracker under control now, and my heart seems to not race anymore.  I never tolerated running because my heart would race way to much although I loved playing sports, my stamina was never all that great, neither was my flexibility.  I felt like my whole left side was tighter than my right.  I never understood why, but maybe it was the Nutcracker Syndrome.   I could see how nutcracker may be the core cause of all your trouble.  Have you gotten checked for it yet?  With Nutcracker, your left renal vein is compressed by your abdominal aorta and mesenteric artery.  This is a main vein that sends blood to your heart and since the blood is not getting through the left renal vein, it has to find a new path through the left ovarian vein and through the pelvic.  In my opinion, it seems that the lack of blood flow to the heart could cause the light head, although I am not a doctor, it does seem logical.  I know that my renal vein was severely compressed, and I did get light headed.  I just couldn't pin point it to the nutcracker since I was suffering from all the other stuff.  Maybe it's depending upon how much the renal vein is compressed, whether or not those specific symptoms occur...who knows, but your symptoms do sound more severe than my symptoms.  I am so sorry you are having such a hard time, and I am sorry that I didn't reply sooner to your post.

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by sue_1234, Oct 15, 2010
Thanks, Lymeball, for answering.  Boy, if I didn't have you two to get personal stories from, I would be so out of luck!  There just aren't any people out there in any forums that have this and are still posting.  You really learn the most about a disease by talking to people who have actually had it.

I have not discussed this possibility with my urologist yet.  I go next Tuesday for an appt.  I had read in one medical article that one patient that had Nutcracker would get heart racing and chest pain off and on.  Then, it said that until he had surgery, he was advised to not get in any body positions that would provoke it--they said arching his back or stretching.  I find that interesting as I feel just standing up straight is a challenge for me, as my heart starts to race within minutes.  

Anyway, after reading your response, lymeball, it really makes me think this could be part of the problem I had.  I have been having microscopic blood in my urine for almost 10 years now, and just now is my uro going to investigate that.  I had my left ovary removed almost 10 years ago now, so maybe that's why pain isn't my big problem.

I had my thyroid removed two years ago, so that wouldn't be an issue with my standing up/sitting up problem, as that started before my thyroid was removed.

Thanks to both of you!

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by lymeball, Oct 15, 2010
I really hope that this is your answer, sue.  I know how frustrating not knowing what you have can be.  I definitely think more people than we think have this condition, but it goes misdiagnosed all the time.  My doc agreed with me when I suggested this to him.  I told him that it should be a standard test to check for Nutcracker Syndrome for anyone with pelvic congestion.  That's why we have to get the word out there.  If we have to go to other forums where people complain of pelvic congestion, then we should go and warn them about this issue!!!  I just get so mad at doctors sometimes!!  UGH!  Good luck Sue, and please write us back to let us know if this is what you had,,,  I will be praying for you...

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by sue_1234, Oct 15, 2010
Thanks.  I really think it should be checked out, too, in all people with pelvic congestion.  I was reading all afternoon on a women's forum, in the pelvic congestion posts from the last 10 years.  I believe only one mentioned something was up with her "left kidney vein", but didn't actually label it as Nutcracker.  So, the other 15 or so peoples' stories just end at having pelvic congestion, and most just get a hysterectomy or have their veins ablated(?).  Those alot of the time talk about how their varicose veins come back.  I'm thinking because the MAIN issue has never been dealt with!

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by lucylu38, Oct 15, 2010
Oh I hope the varicose veins do not come back; although thinking about it, even though I just had mine coiled last week, the blood has to find another route - so who's to say the new blood flow won't make the new veins bulge out and turn into varicose veins??? Yikes, I'm almost 39 now, and I think this is an issue that i will probably deal with for my whole life - I hope not, but as long as the pain level remains a 2-3 on a 10 scale, I think I can handle it. In talking about varicose veins, I had a kidney stone about 2 years ago - my husband rushed me to the ER in the middle of his grandmother's funeral (bad timing I know). In doing some kind of test, the doc found some mass on my liver; then I had to have a liver scan and it turned out to be varicose veins gathered on my liver. I bet that has something to do with this whole issue, for me at least.  I remember the doc saying that some people are more prone to varicose veins than others - funny though, even after 4 pregnancies, I never have had varicose veins in my legs - hope that's not to come. A girl I use to teach with - her husband age 38 or 39, just had some varicose veins actually removed from his legs this summer - wow, sounded pretty painful.

As far as pelvic congestion, I don't even think many docs know what it is or how to check for it or treat it; even though I found out from a CT scan that I had pelvic congestion back in March, no doc wanted to help me deal with it. It's unfortunate that we really have to do all the research ourselves, but thank God for the internet, right?

Good luck, let us know how everything goes next week.  Lymeball, how did your husband's team do??? Our next round of playoffs start tomorrow I think.  Hope all is well and you get back home soon.

Have a great weekend all,
Lori

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by lymeball, Oct 16, 2010
Hey Lory, the first round is today, so we will see what happens.  I am SOOOOO ready to go home and stay home!!!!

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by sue_1234, Oct 17, 2010
I'd like to ask both of you, did you ever have foot swelling from walking or being upright?  I have never had varicose veins in my legs, but did have them in, umm, a "private" area during all of my pregnancies.

Lymeball, varicose veins on the liver??  That sounds odd!!  Did they go away after your surgery?

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by sue_1234, Oct 17, 2010
Sorry, LucyLu, I wrote about the liver varicose veins to Lymeball!!  Wrong person!  So, I ask you LucyLu....

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by lucylu38, Oct 17, 2010
Hi Sue:

The only time I had swollen feet was after my 4th baby was born - too much water retention I guess. Went away within a couple of weeks, though.

As far as the liver veins....I bet they're still there, the docs said it was like so many engorged veins gathered together - I thinnk doc said it's called "hemangioma" - After I recover (fully I hope) from the nutcracker and pelvic congestion, i should have my liver tested just to see how much damage all of the pain meds actually caused. Maybe when i have the other nutcracked vein in my left leg stented (when I don't know?) I should have them look around towards my liver and see if they can coil some of the liver surface veins??? I don't know if that's possible, but I can ask.

Good Luck, Hoping for a better week for us all,
Lori

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by lymeball, Oct 18, 2010
Hey Sue, I felt my feet were more swollen when I stood up all day, but especially on hot days.  I did notice my feet getting lighter in color after my operation.  I didn't realize it before, but they were a purplish color, then they turned white, LOL!  That was one of the first things I noticed in the hospital.  I had even commented it to my sister.  Probably from the poor circulation that I had due to the nutcracker syndrome, but only a guess...

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by sue_1234, Oct 18, 2010
Okay, maybe this is my last question!!  I have a huge issue with wearing anything even slightly tight around my waist.  It feels like it makes it hard to breath and a few other things.  Did y'all notice that wearing something tight made the kidney pressure worse?  It's kind of hard to explain, I used to wear tight-waisted clothes 20 years ago, but now they put pressure in my chest, etc.

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by lucylu38, Oct 18, 2010
Hi Sue:
I haven't been able to wear anything tight or form fitting since this pain started back in January - I especially am not able to wear jeans. It hurts along the waist and more so in my lower pelvic area (crotch-haha-such a silly place to have soooo much pain-I'd rather have some broken bones that would at least heal eventually).  I'm on day 13 after my procedure, and have had 2 good days, not in a row though. I'm trying to be patient. At least the back pain has subsided; unfortunately the same pelvic/urethral squeezing pain is still there. And to make me feel even worse, I got the initial bill from the hospital today - over $31,000 - WOW!!! Can that be real????? It listed the tiny little stent at $6,000 - come on, it's smaller than a staple - that's crazy! I hope my insurance covers most of it and doesn't drop me and my family.

And Sue, don't feel bad about asking questions - that's how we are all learning. The docs don't have all the answers on this one.  And the ones that have some of the answers aren't experiencing it firsthand - otherwise, I'm sure they'd have a foolproof solution right away.  Hang in There and Ask Away.

Good luck all,
Lori

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by lymeball, Oct 18, 2010
Sue, I never noticed about wearing the tight clothes.  I don't think that happened to me.  I do, however, get bad shooting pains when I am going to go #2 when I am on the 1st & 2nd day, or right before my period.  Shooting pains through my "baby hole" and my "poo-hole," so bad that I have to stop going to the bathroom, and I practically fall on the floor, although I have times where it doesn't happen at all. TMI I know, and I feel silly writing it!!!! LOL, LOL, LOL!   Did this ever happen to you guys? I think that even if the docs have removed all the varicose along the uterus.  We still have varicose veins lingering in places where you can't see also causing pain...

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by lymeball, Oct 18, 2010
ps. Lori, I am surprised your surgery was so much!!  Mine was like $37,000 and I believe all was covered by my insurance, but they opened me up completely, took out all my intestines, and rerouted my renal vein to my superior vena cava.  I think it's crazy, how much your doctor charged you!!!  Sorry to be so graphic, but I wanted to stress how much work my doc did for the same amount of $!

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by lucylu38, Oct 18, 2010
Yeah I feel like I was totally ripped off, especially since the pain isn't going away yet. If I get to the point where the pain is gone and I can get back to normal (if I ever was - haha), sure it was well worth it, but that $31,000 doesn't even cover the doc's fee or the radiology dept. fee - uh oh - I'll probably have to pay about $3,000-$4,000 of it. I wish i could get a job to help pay for it - but feeling so crappy all the time, I'd probably get fired for sitting on the potty too much. And on that note....back in the early months of this, I hated to poop because it hurt so bad - I felt like i knew it was going to hurt when it came out so I tried to squeeze so tightly that only a little could get out at a time - sounds silly I know, but I am sure you understand - and as far as peeing, there are still many moments every day that it hurts to start and then right as the last few drops are coming out it feels like my urethra is on fire and contracting so tightly that I stop breathing on account of the pain. I wonder how many people out there are really experiencing the same things we are, but are just too embarrassed to chat about it. My husband laughs about the way I describe these things, but he does understand how serious it is and is supportive. Hope your men are the same.  Take care and keep giggling - that's what gets me through most of the tough days - laughing with my kids and giggling with my husband about the unfortunate mishaps of my body parts. Ha! Have a great night.

PS - Lymeball, thanks for starting this journal; it really has been a lifesaver for me - knowing that I'm not alone.

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by lymeball, Oct 19, 2010
OMGs, I'm not alone on the poop thing, LOL!!!  It's been a life saver for me too., to be able to talk about it.  Even the embarrassing stuff...

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by sue_1234, Oct 19, 2010
Hey guys, I had my uro appt. today.  Apparently micro. blood is not from  bladder--everything looked fine.  When I asked about the possibility of Nutcracker, the doctor said it was a vascular thing.  So, no luck getting started in that investigation.  I guess I'll try to get an appt. with a vascular doctor.

I have the same poop problem!  I have developed hemmorhoids, which is just another varicose vein!  But, when I used to have my periods, it would hurt so baaaad that first day of my period to have a BM.  The pain was excruciating!  And then the rest of the month it wasn't near that pain level.

I have lost the "embarrassment" factor since I started going down hill health-wise.  I guess i want to get to the bottom of it so bad that I know I have to describe everything to the different doctors so that they know about it all.

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by lucylu38, Oct 19, 2010
Everytime I went to the urologist and told him about the blood in my urine, and even when I didn't see it but it came up on the lab and cultures, the doc always said it was no big deal and nothing to be afraid of - yeah, right?? Even I knew it wasn't normal and had to be persistent with every doctor about it. If you have to, go to a new doc and tell him/her that you are paying for the visit and you want more answers - I know it sounds rude, but after wasting so much time back and forth while still in so much pain, it seems like the only way. Hopefully you have a good vascular surgeon nearby that you can see soon. Good Luck, and thank you both for the giggles about pooping. Hahahahahahaha.

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by lymeball, Oct 20, 2010
Yes, please go see another doctor or else you will never get to the bottom of it!!  You have to take this into your own hands.  I am glad we talked about the poo thing.  It felt as if I had a knife stabbing me through my poo-hole. on the 1st and 2nd day of my period.  Please see a vasular surgeon and tell hime what you have in common with us and to please check you for Nutcracker.  Good luck girl!  ...and yes, giggles on the pooping, lol!

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by lucylu38, Oct 20, 2010
Sue:
Did you have a cystoscopy done by the urologist??? Hurts like hell, especially afterwards, but the doc can see up to the bladder and the entryway of the kidneys. If you have bleeding, it probably is coming from the kidneys. That's where my bleeding was coming from - I actually was peeing out blood clots every now and then - something my dumb urologist said wasn't a big deal either - it was almost like trying to push out a baby (not as big though, obviously, and only once the clots would burst through, only then was I able to pee a little bit until the next clot got stuck, then it would start all over again. Gross, I know, but true. I even went to my gyne the second time it happened because it was easier to get an appointment right away - he tried several different catheters up there trying to flush out the clots - then was so puzzled about it, he sent me to the ER at the hospital next door. $5000 later, no check up, only a bloody urine sample, and the ER doc sent me home with antibiotics, even though there was no sign of infection in the urine sample - go figure!
Good luck finding a better doc - keep at it as long as your insurance covers it or as long as you can afford it - but then again, can you really not afford to find out what's causing the pain and fix it. I can't imagine how much longer I can tolerate this pain - I can't wait to see what the doc says next week on my follow-up - I hope he has some better answers of why I'm still having the same pain.

Have a great night.

Lymeball - how did baseball go???? San Fran is winning back here!!!!

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by lymeball, Oct 20, 2010
Baseball has been torture!  Really long season and I just want to go home and stay home!  Edgar is going to try and get a job with another team in the states.  It shouldn't be to hard because he came to japan strait from the big leagues in the states.  Meanwhile, we are waiting for it to end.  They are not even playing him in the playoffs, so we are soooooooo ready to go.  Maybe, just a couple more days, I hope!

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by sue_1234, Oct 21, 2010
Lucylu, yes I had a cystoscopy.  I was able to view my bladder on the screen, and the doctor showed me where the ureters came into the bladder.  I assume that with my bladder looking okay, that must mean the micro. blood is coming from further up.  The doctor didn't say anything like that, I am just assuming so.

The scope didn't seem to bother me too much, just slightly uncomfortable.  I was surprised.

I have an appt. with a cardiovascular doctor next week, with "vascular" being the key part there.  I am hoping to have a good, investigative doctor!  We'll see!

Let us know how your next week appt. goes!

Lymeball, I hope your husband finds something stateside, as I can tell you are ready to come home!

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by lucylu38, Oct 21, 2010
Hi Lymeball:

Today is day 16 after procedure - and I feel horrible - pain level at least an 8-9. What's going on? I thought I was suppose to be getting better. How long after your surgery did you actually notice little to no pain day after day??? If it turns out that the procedure didn't cure the pain, I can't imagine what the doc will be able to do next. I'm hoping it's not just a dead end. Very depressing!!

How's your lyme disease going? Better I hope. Is that something you can be totally cured of, or does it just linger on and on?

Sorry to hear about your husband not playing - that doesn't sound fair!!!! Hopefully he'll get in the game and do great!!!

Good Luck and hope you get back home soon.



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by lymeball, Oct 22, 2010
Well it looks like we will be home on Sunday!!  YAY!!  Lori, My pain is better, but I am noticing my symptoms gradually coming back.  I was sitting on the floor indian style and felt the heavy pelvic congestion again.  It's discouraging, but I think it's because I need to get rid of the varicose veins because I know my blood is flowing the way it should...  I am so sorry to hear of all the pain you are suffering.  Just bare with it, Lori, it's still to soon to tell.  I am so sad for you.  About my Lyme, It's probably something I will live with, but I get get my bacteria load down with antibiotics.  I am currently super dosing on something called olive leaf extract and it seems to be helping.  I just have to wait it out and see.  As for baseball, you never know what can happen. I will fill you in as soon as my husband signs for next year where he will be going.  I am excited to see what's going to happen...

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by lucylu38, Oct 22, 2010
Hopefully your husband can sign here in the states - maybe come to Chicago. That would be cool!!!!

As for your lyme disease and the meds you still take, are you able to try getting pregnant??? I hope so. That would be a great distraction from the pain!!!

Good luck and have a safe trip back. Glad to hear you're coming home.

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by batu256, Oct 24, 2010
Hey everybody,

I hope you are all doing fine and thank you very much for sharing your experiences. It is impossible to meet with anybody with nutcracker syndrome, and so few doctors know about it. That makes what you wrote very valuable. I'm a 20 year old male with NCS, and I have the pains you all described; pelvic pain, left sided flank pain, lower back, and lower limbs. At first, I had visible varicocele (varicose veins at one of the veins that drain blood from testicles) at my left testicle and I had a surgery to get it removed. After the surgery, the pain didn't stop at my pelvic area and in time, appeared in my lower back, left flank and feet. I went to several doctors in urology departments and they said I was fine. One of them ordered a urine test ( thats 2 year after the surgery ) and I found that I had hematuria but said it could happen without reason sometimes. During these times I had to deal with that psychological pain, imagining the pain crap so I understand you perfectly.  Anyway, after discovering my hematuria, I had urinalysis several times and hematuria was always there. So I went to a nephrologist who wanted me to have a doppler ultrasound and my NCS was diagnosed. Then it was confirmed with a venogram. After trying 4-5 hospitals, I settled to the one looked the best. For now, they tell me that my situation is not dire and surgery is not worth it yet. I'm supposed have urine tests every couple of months and doppler ultrasounds every 6 months. The pain is not that bad, I can live with it, although when I remain standing too long it causes discomfort.  But I have some growing visible varicose veins in my pelvic area and left foot, and that kinda worries me, but the doctors say those veins are not critical veins and they are not very important. I'm to have a surgery if I have signs of kidney damage, for example proteinuria.

Well that's my story, I hope It helps someone. By the way, I believe that Nutcracker syndrome is one of the underlooked causes of varicocele, which is very common in men. It makes perfect sense since the left gonadal veins drain directly to left renal vein. This is just like the male version of an underlooked cause for pelvic congestion.

So lucy and lymeball, how are you doing? Lymeball, can you give details about the surgery you had? Did they move only a vein or relocated the entire kidney, stuff like that? Thanks a lot in advance.

If I knew anything about baseball, I would add some comments but sadly I don't :) And english is not my native language so please forgive my mistakes.

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by batu256, Oct 24, 2010
I forgot to mention that I'm taking coraspin, 100 mg per day, to reduce the risk of thrombosis.

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by lymeball, Oct 25, 2010
Hey Batu256,
I am so sorry you have to go through this.  You are still so young.  I really think that you should correct it though.  I read that Nutracker in men may cause infertility, and if you are looking to start a family in the future, you need to fix the problem so that the blood can flow normally again through your pelvic and testies.  I would suggest getting a semen analysis, and if you do come out low, then, you could show your docs, so that they don't dismiss the problem.  Also, it's good to know these things anyway.

  My surgery was pretty major.   They cut me open, like the picture above on the first post.  Then, they removed my intestines to get to my renal vein.  Nutcracker results from the compression of the renal vein.  Then they rerouted my renal vein so that it would no longer be compressed by the abdominal aorta and mesenteric artery, and they reattached it lower onto my superior vena cava.  They didn't have to do anything to my kidney.  I know the terminology is confusing, but that is what they did. The doctor wanted to do this surgery on me because I am a woman hoping to start a family and get pregnant someday, but for you, since you are a guy, the doctors can fix your problem by putting a stent or catheter in your renal vein to open it up which is what Lori (lucylu38) had done. Many doctors don't know about this condition and they like to dismiss what they can't understand, so you should really think about going to see a doctor who has performed these types of surgeries. Oh, and don't forget to get the semen analysis...
That's just my advice.  I am glad you caught this at a young age....

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by batu256, Oct 25, 2010
Hey Lymeball,

Thanks for the reply, that was quick :) Doctors aren't concerned for infertility, since the right gonadal vein drains directly to iferior vena cava unlike the left one that drains to the left renal vein,  my right testicle will never be affected they say. I think that makes sense. Plus my pain is usually focused on left side and lower back, and that is consistent with what the doctors, (and wikipedia lol) say. But I could have an analysis just to be on the safe side. The doctors are not in a rush to perform surgery, because they say while they are confident and experienced about kidney operations, that it is a major procedure that involves risks. They see the surgery as a chance to save the kidney if it is ever in danger. And they don't recommend placing a stent, saying that it could be relocated within the vein or cause thrombosis. That's a shame, since it's a lot less invasive approach than surgery. So all I have to do for now is live with it, with the pain. It's generally not that bad if I get enough sleep and don't remain standing for too long, but sometimes it really causes discomfort. It's the lower back that's the worse, how was it for you?

Did you recover fully from the surgery? How do you feel, is the pain completely gone?  I hope you are doing all right. Thanks a lot for your support, really. You know, I would probably be studying medicine If I caught this a year earlier. And I must say, you are better than 90% of the doctors I went to, considering the fact that you diagnosed yourself.  

And by the way, Lucylu38, I think you could have a doppler ultrasound to see if everything is alright.




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by lymeball, Oct 25, 2010
Batu256,
Honestly, get the semen analysis anyways just to be sure.  It's better to catch it at your age than when your married trying to have children...  My surgery was tough, I was in intensive care for 2 days and a total of 5 days in the hospital.  It was utter hell!!  But on a positive note, I tend to recover pretty fast.  It was painful for about 2 months because of the huge gash that I have on  my stomach.  Then, the pain slowly started to subside.  My pelvic congestion does seem better, but they didn't romove my veracose veins, along my uterus caused by my Nutcracker, so I still have some pain.  I will let everone know how my pain is after I do that.  My pain was mostly on the left side, and just as Nutracker causes some infertility in males, it also causes SOME infertility in females.  I have low ovarian reserve, or had it, I have to check again to see if it was fixed by my surgery.  Low ovarian reserve is when the ovaries don't produce a lot of Follicles(eggs) because the pelvic and the left ovary are being congested by all the blood that is flowing downward toward the pelvic vs up ward through the renal vein and to the heart.  That's why I think you should get checked.  I had low ovarian reserve when I first checked for it at age 23 and all 7 times that I checked after that. It is not normal for a woman to have this until about 35 +...  I just turned 30...  I WISH I WOULD HAVE STUDIED MEDICINE ALSO!  It's never to late though.  :)  Your still young as well...

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by lucylu38, Oct 26, 2010
Hi batu and lymeball:

Sorry to hear about your problems, Batu, at such a young age. I can't believe your docs don't think your issues are serious yet - unfortunately, your docs aren't feeling your pain.  You're right, nutcracker is so understudied by docs - seems to be a new found syndrome. I had my stent put in 3 weeks ago, and have actually finally had 2 days in a row of feeling ok (pain level lower than 4 on a 1 to 10 scale) - yeah that is tolerable, but still stinks to have to deal with the pain at all. Sometimes when I'm out, I look at people and think "wow, I bet they're not having any pelvic pain. I wonder what that's like?"

I go in the morning to the vascular surgeon for my follow up. He is not the one who actually put the stent in, but did see me during my venogram and set me up for the procedure.  I'm hoping he can suggest something more to stop the pain.  I think I am going to ask if I can go back to my therapist for pelvic pain. Before the procedure, as long as I went once a week, I felt good 5 out of 7 days. Hopefully he can set me up for that again and maybe after going for a while, I can slowly wean off the therapy. I'm just guessing though.

Lyme ball, did you get home yet? Hope you had/or will have a safe trip.

Sue, did you see the new doc yet?

Has anyone heard from INternet cruiser?? She seems to have disappeared - I chatted with her on Oct. 16th and never heard back from her. I hope she's ok and was able to get to a doc for help.

Good night all and Good Luck,
Lori

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by taraanne404, Oct 27, 2010
Hi I was hoping someone could help me ...I thought I posted a comment yesterday(I am new to this) but I haven't seen it up..I was just diagnosed with NS yesterday.The dr wants to do the big surgery I have been through years of pain and many surgeries that have never helped this unbearable pain.I am scare to have anymor surgeries, I cried to the Dr who was as cold as ice , and cried all day yesterday..Does this surgery really work................does anyone have any answers.I am only 32 and have two beautiful young children that need a healthy mother..............please anyone knows anything or anything to share on nutcracker syndrome please halp!!!! thanks tara

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by sue_1234, Oct 27, 2010
Lucylu--I go to my appt. tomorrow.  I hope he is a doctor that listens, and not one of those that just waves his hands in the air and dismisses my theory!  I am going to point out that I don't necessarily think that THIS IS IT!   I want him to look at it as a POSSIBILITY because medical literature has shown someone with the same problems as me, AND the pediatric orthostatic specialist has seen a connection in some of his patients with lightheadedness and pelvic congestion.  I will try and post tomorrow night(the appt is 3 hours away, so a full day trip!).

Tara, I am new  and undiagnosed, but welcome.  Lymeball and Lucylu are the "resident experts" and can help you.  They have been invaluable to me!  I know what it's like to try and get first-hand info on NS--not many people out there "diagnosed" with this.  I am like Lucylu.  I think this syndrome is under-diagnosed and not even thought of in alot of cases.  Tara, did you have any lightheadedness or blood pressure issues due to it?  Any problems, especially being upright?

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by lucylu38, Oct 27, 2010
Hi All:

Tara, so sorry to hear. I know how hard it is to try and be a great mom and feel so bad all the time. I almost cried when I read your post. Since you have the Nutcracker diagnosis, do the docs definitely want to do surgery like Lymeball had - see her 1st post with the picture - click on it to enlarge it - I was scared when I first saw her scar - but thankfully I had repair for my nutcracked left renal vein with a stent.  I had the procedure just 3 weeks ago, and I did have my followup today. Just got back a little while ago, over an hours drive (I know how you feel Sue, although you've got it 3 times as bad).  I told the doc that I had only two days of feeling good during the first 2 weeks afterwards, then had 2 1/2 days in a row of feeling good this third week. He assured me that I am not supposed to feel great all the time yet, but he's hoping that within the next 2 weeks, the pain will subside for good. I sure hope so. I told him how I am tired of taking so many meds for the pain; he suggested taking 2 advil for the pain because it helps relax the soft tissues in the pelvic region.  He said that if I don't feel pretty good in 2 weeks, he may go ahead and schedule me to have another stent put in my left femoral vein (because it is being nutcracked too, allowing more blood to pool in the lower pelvic region) .  I asked about going back to therapy and the doc said I should wait for a couple more weeks before I decide to do that because if the pain is not totally in the muscles, the therapy could do more damage than help - so I agreed to wait.  He also said that if I have a couple good days in a row, I could go back to intercourse with my husband - won't he be excited!!!!! The doc told me no sex for the past 3 weeks (probably seemed like a lifetime for my hubbie) and suggested I take 2 advil about an hour before sex to help lower the pain if there would be any afterwards like I use to have. And for the funny part - here come the giggles, I know . . . . . the doc said no hands and knees . . . . meaning no doggie-style - hahahahaha - when he said that, I almost burst out laughing, but he was so serious about it; I sure laughed once I left the office.  So I'll let you all know how the pain hopefully disappears over the next 2 weeks.

While I was there, the doc showed my what my main uterine vein looked like on the venogram - it was so huge - it should be skinny like a spaghetti noodle, but it was so fat and full like more round than your finger - yikes - so much blood = so much pain down there.

Tara, try to find a vascular surgeon who you can get an appointment with and ask about having a stent placed in the renal vein - much less invasive, although almost as expensive as Lymeball's surgery; I still haven't seen what my insurance is going to cover yet - yikes!!! But I'd pay it all to have the crazy pain go away.

Sue, good luck tomorrow; I'll be thinking of you and praying for you all!!!!

Lots of well wishes for all,
Lori

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by sue_1234, Oct 27, 2010
LOL!!!!  How did you keep a straight face when that doctor said that!!  I probably either would have laughed without thinking or turned beet red from embarrassment.  Or, maybe both!

Thanks!

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by lucylu38, Oct 27, 2010
Even funnier was that he said in a couple of weeks when I call him to check in, he said if I was having pain with sex or just after it, he could suggest some other positions.  I didn't know what to say!! I was embarrassed and shocked.   Today was the first time that my husband did not go with me - probably a good thing - he would've been hysterical. I don't think I'll let him near me when i call the doc back in 2 weeks, he'll make me laugh, too, while I'm on the phone, I'm sure.

Good Luck tomorrow!

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by sue_1234, Oct 29, 2010
Okay, no luck in addressing the NS directly because my top issue is blood pressure swings while sitting and standing.  I am to begin a b/p medicine to try and get it under control.  I will mention it again in a couple of months, and bring along some copies of medical papers written how it might relate to body positions.

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by lucylu38, Oct 29, 2010
Oh, so sorry to hear your news. I do hope your BP can get under control, but I wish the docs could also deal with the NCS. Good luck with the new meds, and keep in touch.

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by lucylu38, Nov 01, 2010
Hi All:

Just an update - since seeing the doc last Wednesday, I actually had 4 pretty good days in a row (Thursday through Sunday), but unfortunately as soon as I woke up and went pee today (Monday), the pain started - got worse as the morning went on and I finally broke down and took tramadol in the afternoon - I'm hoping this doesn't last.  Why can't it just be fixed for good?? Go figure, just have to wait it out I guess.  On a happier note, was able to have "relations" (hahaha) with my husband and all was well - so that's good news.


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by lymeball, Nov 02, 2010
taraanne404, I am so sorry I didn't get back to you sooner and am sorry for your heart ache.  I just got back to San Diego from Japan a couple of days ago and I had to settle in.  Did the doctor tell you that you had to get this surgery for sure?  Why was he suggesting it instead of the stent?  How old are you?  Do you have any Children?  The reason I am asking all of these questions is because I got the surgery done in hopes of having a family one day.  I just turned 30, and my doctor thought it would be best to have the major surgery.  He said that if I ever got pregnant, the stent could move and I could have complications.  The surgery is a sure fire way of getting rid of Nutcracker for good.  They rerouted my renal vein completely so that it would no longer be compressed.  I am not going to lie to you and tell you that that surgery is not painful because it is.  I was in the ICU for two nights and in the hospital a total of 5 days.  It took about 3 months or so for the pain to be completely gone in my stomach from the huge opening.  I just barely, today, had my first real workout to where I actually worked out my abs.  It does suck, but at the same time you have to think that everything that happens in life only makes you stronger.  I really do believe God works with us through these trials.  He is shaping and molding our character.  You may be able to help someone in the future because of this.  What we choose to do with the trials that we endure is what's really important in life. I will be praying for you.

Lori,
I am finally back in SD!!  YAY!  Giants Won!  Were you bummed?  Edgar is going to weigh his options, but he really wants to stay in the states.  Meanwhile, we are having sooo much fun!  We just started working at the sports complex that we opened with Edgar's family and trainer before leaving Japan.  It's called "Gonzalez Sports Academy."  You can google it and see our website.  I LOVE IT!  Business is finally starting to pick up!  This is what we are going to be doing the whole off season! Sports, sports, and more sports!  We eat, live, and breath sports!  LOL!

Sincerely,
Cristina  (lymeball)

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by sue_1234, Nov 02, 2010
Lori,  glad you had a few good days.  Maybe this bad day is just an odd one--hopefully!

Cristina, I'm sure you are glad to be back home and be with your family!  The sports complex sounds awesome.

I haven't found a doctor yet willing to look into NCS.  I'll keep plugging away!

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by lucylu38, Nov 04, 2010
Hi Sue:

I'm hoping you have found a doc willing to help.  After my 4 good days, I did have 2 pretty bad days, but now have had 2 good days - so I don't know what to think. I guess my body's just crazy - it doesn't know what it wants to do.  Are you anywhere near Lymeball's doc??? Maybe you could call her doc and get a referral for a doc in your area - just a thought.

Lyme - glad to hear you're home - Congrats on your home town World Series win - even though I was rooting for Texas - Josh Hamilton (Texas CF, I think) is friends with the Pastor of our Church and is suppose to come speak here soon - that will be cool.  How's the Lyme disease??? And baby hopes???  Good luck with all.

Hope you're looking forward to Thanksgiving - can't believe it's November already.

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by lucylu38, Nov 11, 2010
Hi All:

2 weeks have passed since my last doc visit (5 weeks post-op) and still having the same pain - not as often though; I'll have 3 good days, then 2 bad ones, then 1 good one, and 2 bad ones . . . So I called the doc and his nurse just called to schedule me for an ultrasound - who knows where that's going to go.  

More exciting news though - our black lab, Lucy, is pregnant and getting ready to deliver some pups around Thanksgiving.  I'll add some pics,  and even ship one out to you if you want.

Hope all is well,
Lori

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by sue_1234, Nov 13, 2010
Let us know what your ultrasound shows.

Oooh, puppies are so cute!  

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by lucylu38, Nov 23, 2010
Well, I go in the morning first to a pelvic floor therapist, then to the vascular surgeon, and then to get an abdominal and transvaginal (ewww) ultrasound - I guess they are looking to see what veins still have varicosities. I hope they see something else they can fix because I am still having pain almost every day, not as intense as before, but it's still there.

As for my girl, Lucy, her pups should be here soon - she's waddling around and getting a bit gooey- hahaha.

Happy Thanksgiving to All and Best Wishes for a Painfree Holiday,
Lori

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by batu256, Nov 29, 2010
Hey Cristina,

How are you doing? It's been a long time since you last wrote. I hope you are fine!

Batu

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by lymeball, Dec 14, 2010
Hi Ladies!!!  I am so sorry I haven't written in a LONG time!  What is the update for you all?  I would really love to know.

  I am doing well. I definitely have less pelvic pain, but it has not completely gone away.  I have been exercising a lot.  I have been taking the spinning classes at our Sports facility and I don't feel the same horrible pain that I did prior to my surgery.  When I used to do spinning, right before my period, I would get a horrible pulling pain in my uterus.  I felt it was being pulled down to the floor. :(  I don't get it remotely as bad as before, but I can't say it's 100% gone.  I would say I am 80% better.  If I am walking all day, or standing, I may feel that same pain, but again not as bad.

On another note... Lori, my brother in law just signed with the red sox although I know you like the white sox, LOL!  He is their new starting 1st baseman and we are all SUPER EXITED.  As far as my hubby, his agent is talking to 2 teams here in the States!  Thank God!  I think I will know tomorrow what will happen with him.  Meanwhile, I have been working like a mad woman and we just came back from a well deserved and desperately needed weekend in VEGAS!

Cristina

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by lucylu38, Dec 19, 2010
Hi All:

I did try posting a couple of weeks ago, but I do not see it here. Sorry.  Well, I had my appointments right before Thanksgiving - I saw the pelvic floor therapist, and yes, she said my muscles are still tight; then I saw an ultrasound tech and doc - they said I have lots and lots of varicose veains everywhere they could see - at least they are not visible on the outside - thank God! Then I met with my doc, the vascular surgeon - he reviewed the ultrasounds and really said it was up to me how much pain I was willing to endure.  He said he was going to look for an undergarment (underwear I imagine) that are tight and constricting and can keep my parts compressed - sounds pretty uncomfortable - but I haven't heard back from him yet.  I don't know that I would wear them anyway.  He also said he could try going into each vein with a needle - OUCH - and coiling up as many as he could from the skin's surface, but that research hasn't shown which veins are actually necessary in women - WHAT???? - so I don't think that's a chance I'm willing to take yet.  So I'm dealing with the pain.  It's not as severe as it had been but I still have it.  I saw the gyne for a yearly pap last week and he said if therapy seemed to help before (which it did, at least 5 of 7 days a week) then why don't I go back??? Good question, but do I really want to have to do that for the rest of my life?

Anyway, our lab, Lucy, had her 13 pups, on November 27th - we lost 4 of them within the first couple of days - one was stillborn, one was the runt who was soooo tiny and 2 were smothered or rolled over by the mom in the night - sad - but the other 9 are doing well.  Their eyes just opened and they are starting to walk and wrestle with each other.  Lucy had 4 yellows, 2 blacks and 7 chocolates total (2 yellows and 2 chocolates died).  7 of the 9 already have deposits on them, so we only have 2 more to go.  The pups will stay with us until mid-late January.  Our kids love having them here and they are a big help with clean up and cuddling (which everyone needs).

So, Cristine, did you lose all your $$$$ in Vegas??? My husband and I have never been there, but I'm sure he would love to go - he brags about how lucky he is - but I would feel so bad if he lost too much money there.

As for your brother in law, we will definitely have to look out for him when he plays the White Sox, and keep us posted on where your husband will play.  I miss baseball, football is ok, but only once a week and ending soon.

Good luck with your new sports facility - I bet it's cool - a lot of work though - remember to take lots of breaks and put your feet up.

Have a wonderful Christmas,
Lori

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by fwblisa, Jan 17, 2011
I have nutcracker syn.They tried to put a stint in but it flew back and lodged in somewhere ,so they opened me from chest to pubic and moved the vein and cut and spliced it together. 12 hrs on the table and 5 days in ICU no food no water.My only complaint from surgery was my hips were always in spasm. They didn't know why or what to do. Finally a Dr. sent me to Phy. Therapy  they knew what what wrong now 10 months later I am well with the hips. But the surgery failed the vein clotted and collapsed. But no more pain in my side.The gonadal vein is still huge and causes lots of pelvic pain at times.They say there is nothing else they can do for me,just a urine test every 6 months to check for blood. My vascular surgeon found this by a cat scan of my abd.

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by lucylu38, Jan 17, 2011
Yikes!!!!

Hi fwblisa:  So sorry to hear of that.  I have a stent in my left renal vein (placed October 2010) and I often wonder if it will stay in place or move around.  I sure hope it stays; what you went through sure sounds scary.  I have 4 kids (12, 10, 8 and 5) and sure do not have the time to be in the hospital.  I still have the pelvic pain like I did since last January 2010, but it is not as severe, maybe a 5 or 6 compared to the usual 10, and not as often, maybe 2-3 times a week compared to 6 or 7.

Good Luck and stay in touch.

Take care,
Lori

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by afddesigns, Jan 19, 2011
Hi!  My name is Michelle and I am 60 years old.  I was diagnosed with NCS about 4 years ago.  I had a ct scan because the doctor thought I had a femoral hernia.  The NCS showed up on the ct scan and they said I didn't have a hernia.  I have been having left side pain (in two spots), and groin pain for about five years now.  I was simply told nothing was wrong and I shouldn't worry about the NCS.  

This past October I started having a very sharp pain (in the left side) that kept getting worse and worse with activity.  (I am a decorative and faux painter so I am very physical in my job).  I also had hemeturia (med. amt.) in my urine.  My question is this:  am I damaging my self further by doing this physical job?  I have seen two doctors for this problem (vascular and nephrologist). The vascular doctor said nothing to worry about and the other said he had never heard of the diagnosis.  

In addition to the NCS I have pernicious anemia, and some othe blood problems.  Any one have an idea about the damage I could be causing myself?


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by lucylu38, Jan 23, 2011
Hi Michelle:

Isn't a nephrologist a kidney doctor?? Shouldn't he or she be aware of NCS since it takes place on the left renal, or kidney, vein??  So srarnge to think that kind of doc wouldn't know about it.  I think that you could live with the NCS, as long as you can tolerate the pain that goes along with it.  I was diagnosed with NCS last August, after seeing several docs about the chronic pelvic pain that levelled out at about a 9 or 10 since last January.  I went to a vascular surgeon and had a venogram done to confirm the NCS.  I had a stent placed in that left renal vein last October, and although the pain has decreased some, I had a terrible case of lots of blood in my urine just a few days ago; I was scheduled for a rush CT scan to see if the stent had moved or if the kidney had been damaged to cause the blood.  The doc called late Friday night and said the stent and kidney looked ok, so he wasn't sure why I was having the blood.  I am scheduled to see him again this week - and it feels like I am starting all over again - the pain is back and I've been unable to leave the house for more than a short time; I need to make sure I am close enough to the potty, just in case.

Good Luck and try to live your life without the worry of NCS and its crazy side effects,
Lori


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by lymeball, Jan 28, 2011
fwblisa,
Hello!  I am who's picture from surgery you see on this discussion!  Looks like we might have had the same surgery done.  I can't believe the vein clotted! Did they reroute your renal vein?  My doc said that my renal vein was really high on my vena cave close to my heart which was a medical anomoly, so he said. He completely rerouted my Renal vein to relieve it from being compressed, and placed it down lover on the vena cava.  So far so good.  My periods are way less painful!  I am feeling a lot better.  I don't understand how your vein clotted.  I was in ICU 2 days, 5 days in hospital total.  No food or water for 4 days, but only 2 hrs maybe 3 on the surgery table.  How long ago was your surgery?  My doctor specifically told me that I should not do a stent because they can move.  

Michelle,
I have no idea if you are damaging yourself by painting.  I am so sorry.  I know that my left sided pain would get worse when I went to physical therapy prier any nutcracker diagnosis.  I think in my case my renal vein was being stretched to much and my left gonadal vein was engorged because that is the alternate route that the blood takes from the renal vein being compressed, hence the groin pain in nutcracker syndrome.  I would definitely try and find a doctor who knows more about Nutcracker Syndrome.  Where do you live?

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by lucylu38, Jan 28, 2011
Hey there, Lymeball:

How's your sports facility?? Keeping you busy I bet.  Are you getting ready for baseball season yet???  I sure miss it and can't wait until it starts again.

I went back to doc and are waiting to have another venogram done with the coiling procedures.  Pain wa better for a few weeks, but unfortunately has returned.  Stent is still in place and kidney looks fine, so doc isn't sure what's going on.  I hope to find out soon.

Have a great weekend.  Any good news on the baby front??

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by afddesigns, Jan 29, 2011
Hi! It is Michelle again.  I am not sure who responded to my question but thank you so much for your thoughts.  I too believe I must find another doctor.  I had an appointment Thursday for follow-up.  Two weeks ago the nephrologist had never heard of "ncs" but now he wants me to have a MRA.  I will have this next week.  The doctor has obviously done very little in way of investigation because he said if it is true that I have the "ncs" that he would put me in touch with a vascular doctor at the UT Health Science Center here in San Antonio, Texas (which is were I live) to have a stent put in.  I asked him how long I would be unable to work and he said you can go back to work the same day.  (I just can't see that)  I have been watching and reading all the blogs that I can and for the most part the comment lean toward advice against a stent.  I hope you don't mind but I am going to give type up the exact information from the radiological report and please tell me what you think:

"In the left retroperitoneum, there is evidence of retrograde filling of the left gonaldal vein from the left renal vein.  The left gonadal vein forms a variceal connection inferiorly and laterally to tortous veins which ascend in the pericolic area and drain into the splenic vein.  These findings suggesst a component of mechanical obstruction to drainage of the left renal vein, and there is some narrowing of the proximal left renal vein where it passes between the aorta and SMA."  

San Antonio does not have a reprutation for having a fabulous medical community.  The closest city for good medical care is Houston, Texas.  I would be so greatful if those of you that are experienced could give me some of your knowledge after reading my description.  I am up and down ladders and scaffolding every day.  I bend over a lot and the pain and fatigue becomes overwhelming by the end of the day.  What really makes me feel weird is that if feels like something is sticking me from the inside when I bend over.  I still have hemeturia in my urine, pain in my legs, pain in my left side and just under the ribs almost to the center.

The most difficult thing for me is not feeling comfortable that there is a qualified doctor to fully diagnose the situation.  I have been having this pain since 2006 and have been to many doctors and had too many scans.  Has anyone had the MRA?

Please write back!  

Thank you.
Michelle

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by lucylu38, Jan 30, 2011
Hi Michelle:

This is Lori (lucylu38) - I am South of Chicago and have a pretty good doc - he's a vascular surgeon - at least he's the only one so far who will listen and attempt to help.  I had the stent put in in October 2010; it is still in place (confirmed through CT scan last week) and the pain was better until I starting having blood in my urine about 10 days ago - blood is gone but pain remains unfortunately.  My doc says that the left renal vein being nutcracked is what causes the blood to back up into the kidney, causing blood in the urine, and causing more blood to flow down into the pelvic region and pool there (where I have lots of varicose veins on the inside) and so much pain in the urethral area.

If your doc is ok with it maybe have him contact Dr. John White in Niles, IL - he works out of Lutheran General Hospital in Park Ridge, IL (just across the street from his office) - maybe Dr. White can bring him up to date on the stenting procedure - just a thought.  Google his name to get his number - I don't think this medhelp site will let me post numbers - not really sure.

I feel confident that the stent had helped my pain for a while, but the new or recurring pain is caused by the varicose veins and too much blood down there.  I am waiting to hear from the nurse so I can set up another venogram and coiling/embolizing procedure.

As far as time off after the stent, I had pretty bad back pain for a couple days, took vicodin, then was ok by day 3 or 4.  I was still a little uncomfortable but was able to function fine - I don't climb up and down ladders every day (or ever) but do chase after 4 kids every day, including a wild man hyperactive 5 year old.

Good luck, Michelle, and keep looking for answers - I think we all agreed on this journal that since most docs don't acknowledge nutcracker syndrome or pelvic congestion syndrome, we have to do so much of the research ourselves, then ask the doc about what we found out.

Hang in there, and be careful on those ladders!!!!

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by lymeball, Jan 31, 2011
afddesigns,
I am truly sorry for your pain.  May I ask how old you are?  My doctor told me that depending upon how old you are, is whether or not they decide to put a stent in, or have the kind of surgery I had (view picture on this journal).  It is extremely invasive, but I think it is worth it.  I don't have as much pain as LucyLou38, but I did just turn 30 and probably had less vericose veins.  I am not sure... Unfortunately, with my big surgery, I had to rest for quite a while, Yet, I still ended up getting a Hernia!  I just had surgery to repair it, BUG!  Your doctor may also contact my doc.  His name is Dr. Ralph Dilley Scripps Green Hospital in La Jolla, CA.  He is a Cardio Vascular Surgeon.  He also may be able to give your doc some insight.  From your report, "...and there is some narrowing of the proximal left renal vein where it passes between the aorta and SMA," I believe you definitely have nutcracker syndrome.  I just don't know how severe.  My Renal vein was almost completely compressed...

Lucyloue38- Hi!  I am itching for the season to start because my hubby is working way to much and I just need him to concentrate on baseball.  I am getting a little nervous because he hasn't signed with a team yet.  He is waiting for the right offer. GULP- It's getting to close for comfort.  Spring Training is just around the corner!  Did you read about my hernia surgery?  SOOOO ANNOYING!  I was in the hospital 2 nights because underneath my scar, every layer was open.  My doc said it was a really big hernia and my abdominal muscles were separated 3 inches!!!!  BUG!

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by afddesigns, Feb 01, 2011
Hi Lymeball!  Thank you ladies so much for responding to my situation.  I am 60 years old.  But not the typical 60 yr. old.  I am extremely active with my profession and working causes me to have alot of pain in my left side but I also have alot of pain just above the lower left side along with nausea.  Both of my legs feel like they have a tourniquet around them.  Causing me alot of pain.  I also wake up at night sweating and drenched.  Last Sunday I was driving on the expressway and all of a sudden I felt like I was going to pass out I started seeing little black spots.  I had to pull over real fast.  It happened twice in one day.  I am sorry for rambling but it is so good to talk with people that have this and understand.  

Since 2008 I have had 3 CT scans and they all say the same thing.  I went back to the doctor last Thursday and he wants me to have a MRA (magnetic resonance angiography).  He had never heard of NS until I walked into his office and told him about it and I just don't feel comfortable that he knows what he is doing.  He is a nephrologist.  Who sent you to the Cardio Vascular Surgeon Lymeball?  If you don't mind me asking how were you originally diagnosed and how did you progress to the doctor that did your surgery?

Some of the literature that I have read indicates all images should be taken in a standing and sitting position because the pressure is greater when in those positions.  What tests did you have to go through?  He wants to see where the blood is coming from.

Thank you so much for writing back.
Michelle      

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by afddesigns, Feb 09, 2011
Hi ladies!  just wanted to say that I have a friend that is a doctor (a pain specialist) and he found a doctor for me that know all about NS.  He is a vascular surgeon.  I have a test tomorrow morning (ultrasound) in his office and an appointment to meet with him at 2:00.  I took all the previous test results and images today and he was going to start looking at them as soon as I left.  So, I should have some results tomorrow!  Yeah!  I'll let you know.

Thanks.
Michelle

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by lucylu38, Feb 09, 2011
Good luck Michelle.  I hope you find the help you need.

I am still waiting to hear back from the doc to schedule my next venogram and embolizations - why does it take so long (2 weeks so far) to make a call and set something up???  I have good insurance and always pay my portion of the bills right away - you think they'd take that into consideration.

Lymeball - did your husband sign yet?? I agree that must be nerve-racking waiting until the last minute.  Good Luck and I hope you stay in the States this season.

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by Touchet, Feb 12, 2011
is it possible for a guy to have it?  I have been suffering from left flank pain and left testicle pain for a while.  They found a veriococle on my left testicle and it led me to see nutcracker syndrome as a differiential diagnosis.  Thing is, NONE of my doctors have even tried to rule that out.  They keep insisting that my pain is made up or in my head, that i have an infection.  I just find it funny that i keep having these infections over and over again.  Last time, they kept insisting i had an infection, even though all tests didn't show it at all.  I do have a scar from an appendectomy on my left side right next to the top of my hip bone.

Don't know what I should do.  I emailed my doctor last night and told him about the syndrome.  I'm thinking at this point to go see another doctor.  What type of doctor do you see for this--if I have it?  I have had all kinds of test done, but as you guys have said, they even miss this diagnoisis on CT scans, so it must be something you have to really be looking for to see it.

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by lucylu38, Feb 14, 2011
Hi Touchet:

Yes, guys can have it too.  After dealing with the urologist and gynecologist for too long, I went to a vascular surgeon and had a venogram done to confirm the nutcracker syndrome. You may also look into an interventional radiologist, but I would start with the vascular surgeon.  Good luck and let us know what happens.  We all know - the pain *****!!  My pain returned last night worse than ever so I took a double dose of tramadol and now can't move from the bed - sooo dizzy, but the pelvic pain isn't so bad now, so at least that's good.

Hang in there,
Lori

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by afddesigns, Feb 19, 2011
Hi Ladies!

I went to the vascular surgeon and had a sonagram (probably sic) anyway the tech showed me on the screen how the vein was flattened in a particular area with a bubble like area right next to the flattened area.  When she was doing the test she was pressing very hard and I told her that is exactly where it hurts.  Ok, I have a radiologist describing and calling it the NCS and I saw with my own eyes the problem but the doctor said the test was really inconclusive.  That he would have to do a venogram to know for sure.  Have any of you experienced this?  I got the impression he thought I really didn't have this condition and I was devistated because I just need an answer after more than five years of searching for one.  

The day I got the test I ended up with shingles that night.  This is twice now.  Has anyone had this problem?  Anyway, I now can't have the venogram until March 8.  Does this test hurt at the time of the test or subsequent to it?  I am really nerveous about having this.

Please let me know.

Michelle

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by lucylu38, Feb 19, 2011
Hi Michelle:

I just had my 3rd venogram done last Wednesday.  I actually thought I was going to have multiple varicose veins coiled to relieve some of the pain, but only ended up having a regular venogram - very disappointed and still in lots of pain.

Anyway, the venogram is ok - 1st annoyance is getting the IV placed, then wait until the radiologist is ready for you. Then the rubbing of your groin area with something really cold and blue (that eventually washes off after 3 showers).  then the nurse injects something in the IV to calm you and partially put you in a twilight - you'll still be awake but not feel a lot of pain.  Then the doc puts the wire into your groin vein and you can watch it on the 4 tv screens above you.  It's not that painful, pretty interesting to see though.  Afterwards (about 45 minutes) you have to lay completely flat for 2 hours to make sure the vein clots itself, so your back will ache a little until you are able to get up and move around. So it's not too bad, just hope they find what they are looking for and are able to fix it soon.

Good luck, let us know what happens.  The doc was suppose tocall Thursday with his next plan for me, but now it is Saturday night and I still haven't heard from him - I think he's unsure of what to do next - everyone is telling me to give up and just go to Mayo Clinic - I don't know if I have the time for that - I have 4 kids to take care of and I certainly wouldn't want to leave my husband home to care for them and go by myself.  We'll see what happens.  Hopefully the doc will have good news next week.

Hang in there and get over the shingles (I've never had them and don't want them either),
Lori

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by afddesigns, Feb 22, 2011
Hi Lori!

Thank you so much for responding to me.  Yikes! the procedure sounds very uncomfortable.  I am just so frustrated.  I see all the comments that have been posted and I can see everyone's frustration.  This is a terrible delima for all concerned.  It seems like Lymball has the only knowledgable doc on this site.  Maybe we should all go to San Diego for group treatment.  I am so sorry that you have had all those tests and still do not have a good remedy for your situation.  Dear God I am afraid I would be tempted to give up but I know how damn painful this problem is and you can't give up.  I have to tell you, after reading your response I am terrified your situation could be my outcome.  I.E. now resolution.

These shingles are right on my spine at my waist and are causing pain every where there is a nerve.  I am so tired of being sick and tired.  

I have another question for those of us that suffer.  My urine is very bubbly and frothy.  Is this something that is normal?

Well let us know what happens Lori I will be thinking of you.

Michelle

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by lucylu38, Mar 01, 2011
Hi All:

Michelle, I haven't heard of frothy urine - could it be something you ate? odd, yes. Hopefully it's not a big deal.

I finally heard back from the nurse - about time, right? She called to let me know my next step is scheduled for March 11th.  It is called a direct stick ultrasound guided venogram - she said much more extensive than what I've already had, including anesthesia. Yikes.  She said the radiologist, the vascular surgeon, and the urogynecologist will all be there - hopefully the three of them can figure it out.  I am hopeful, but weary.

Michelle, how are the shingles? I'm hoping you're feeling better from that by now.

Lymeball, any baseball news?????

Good luck all,
Lori

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by lucylu38, Apr 04, 2011
Hey Lymeball:

Did your husband sign yet???  Good Luck.


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by SJA123, Jun 12, 2011
Hello all, I read every post on this thread because I was so excited to find others with NCS. What a relief! I am a 25 year old female diagnosed with it 3 years ago. I had left lower abdominal pain. dysparunia, and micro-hematuria. I had two renal vein angioplasties, without stent placement, with immediate symPtomaine relief after each, but eventually returned. On third attempt to angioplasty, it was discovered the renal vein had completely collapsed. After around 6 more months of pain, the pain suddenly stopped. Vascular surgeon said my body had probably created more collaterals, which alleviated the pain. That was 2009 and 2010.  Fast forward to 2012 and I have been trying to conceive for 17 months with no success. Went to a reproductive endocrinologist, who did all ovary function test, tubes test, sperm test, bloodwork....all normal. Dr suspected endometriosis from an internal pelvic exam. Dr performed an internal ultrasound which showed the pelvic congestion varicose veins all pressing on my uterus. Dr performed a laparoscopy. Found moderate endometriosis and of course, varicocele or large tangle of varicose veins, only on left side, due to nutcracker. Dr removed endo with laser. Dr also used laser ablation on varicocele walls to prevent it from pulling on my uterus. I am now three weeks post laparoscopy. Initially my left kidney hurt, but has since stopped. Now I am having pain at the surface of my skin in my left leg crease near groin area. I am guessing this is where the varicose veins re-routed. I am hoping this will subside, but I am most hoping that I am able to get pregnant! Dr says everything looks good now, so our fingers are crossed. It is aplomb to know that others have gotten pregnant with female nutcracker. Just thought I would add my story! Please message if you have any info regarding baby making and NCS!

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by Flamingo77, Jun 30, 2011
I can't believe I found this blog. I hope everyone is feeling better and I will pray for babies for those of you trying to conceive!!

For over 4 months now,  I have been suffering from chronic pain, abdominal attacks, pressure in my urethra, pain, fatigue, blood in my urine, blood clots in my urine, ect..... I have been to several Dr.s including a GI (the stomach pain started first), a surgeon (they were going to remove my Gallbladder but then the urine symptoms started). I have had 4 blood test, 3 Ultrasounds, an endoscopy, a Hida Scan, 4 Uranalysis' and then my Urologist ordered a CT. The CT showed a tumor in my bladder but when he went in for the Cystoscopy, it was gone. He put his head in his hands and said he was shocked and that it may have been a blood clot and sent me on my way suggesting I go back to a Gynecologist. I was in severe pain for two days after the Cystoscopy, which is supposed to be cause no "discomfort".  I found out about Nutcracker syndrome and I found CT and MRI images showing what it looks like.  I then dug through my CT scan and I see that my renal vein is even more compressed "pinched" than the images I found with the Diagnosis.  I called a Urologist at Northwestern in Chicago and told him what I found and he laughed and said, "Those types of things are really rare.  We have to look for more common conditions first." Which frustrated me because my other Dr.s already looked for an "inside the box" or "common profile" diagnosis, as bills pile up. So after that phone call, I was able to get an appointment at the Mayo Clinic.  I know they treat this condition.  I am going there on 7/14/11 with the hopes they can figure out what is wrong and take my concerns seriously.  I got married in Feb and I have been sick ever since and it really effects every area of my life.  I am so happy to have found this blog.  I have blood in my urine during my period.  Does or did anyone have that?  Does anyone have their images from before surgery?  I wonder if I can post mine here to show you.  Thank you for reading this!  I feel hope again!



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by mommasan46, Jul 10, 2011
Just found this site.  I was diagnosed with nutcracker syndrome after a life of terrible menstrual cramps, pelvic congestion, blood in my urine during menses and pain in my urethrea while peeing during my period.  It was discovered by accident during a venogram and venoplasties to open up closed valves in my Azygous and internal jugular vein related to MS.  The IR went back in a second time because the CAT scan showed that the kidneys were draining into my Azygous instead of my vena cava because the renal vein was compressed between the aorta and SMA.  I am 3 days post-op for stent placement in the renal vein.  The stent is pretty long to prevent migration. The pain in my back from the stent is horrific.  I was wondering what other peoples pain level was post-op.  My doctor just said that some people have soreness.  But this is way beyond soreness.  I guess I am just looking for reassurance that is will get better.

Sandy

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by lucylu38, Jul 12, 2011
Hi Sandy, I had a stent placed in my left renal vein back in October 2010.  For the first 2 weeks, I had severe pain in my lower back - it is common - take lots of pain meds and try a heating pad.  That pain started to lessen as the weeks passed but unfortunately it did nothing to help with the horrible pelvic/urethral pain that I still have.  It's like the docs fixed something that I never knew was wrong in the first place.

Good Luck and Hang in there,
Lucylu38 (should be Lucylu almost 40 now - ha)
Lori, Mokena, IL

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by JLR37, Jul 15, 2011
I have Nutcracker Syndrome also and I am so Happy I found this site! The pain is severe around the week before my monthly and the week after. I also have a blood clotting disorder on top of the NCS. I Have 2 children, but suffered multiple misscarrages, but thinking they were related to my bloodclotting disorder. Anyway it seems like the pain has gotten worse after my last pregnancy. The Dr's said they wouldn't put a stent in for fear it would colaspe. They want to do a Kidney transplant with my own kidney. Take my kidney and move it somewhere else in my body and reattach it. I am so scared. Has anyone on here ever heard of this procedure? Also has anyone on here ever been told that their blood flow is opposite of Normal people? The Docs told me that the blood should flow from your heart to your kidney then back up to your heart. Mine flows from my heart to my left kidney then detours down through my abdomin and then back to my heart. Is this how it is with all people with NCS? I'm just so scared, but tired of living with chronic pain.

thank you, Jodi

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by lucylu38, Jul 16, 2011
Hi Jodi:

Sorry to hear about your pain, too.  It really *****!!!!  I haven't heard of a self kidney transplant - that sounds a bit crazy - like Lymeball, why couldn't the doc just reroute the left renal vein instead of the whole kidney???  I had the stent placed in october 2010, and don't think it's moved or anything, although it didn't cure my pain - I still have the constant pain - I'm pretty sure I've been being treated for IC but don't really have it, who knows??  I am going on vacation with my husband (yeah, no kids) this coming week and when I get back I will make another appointment with the urogynecologist to see what to do next.  I know someone else on here was going to Mayo Clinic this week - hope she found some answers and a real cure.

Good Luck and keep searching about the kidney transplant,
Lori (Lucylu)

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by JLR37, Jul 17, 2011
Thank you for responding luclu38. I think I will try and find more Doctors to get more opinons. I'm sorry your still in pain, l understand competely!!!  I hope we can all keep in touch and update each other. Enjoy your vacation!!  Let me know when you get back what the Dr's say.  Thanks again Jodi (JLR37)

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by Sonja3200, Aug 06, 2011
Hi Everyone - I've followed this blog since Lymeball's first entry on 8/10, but I guess to shy to participate. I had pelvic and left ovarian vein embolization in 11/08 for PCS. I was in so much pain and very excited that after four years of all the tests, you know...that this would "fix" me. I woke up with so much additional new pain on my left abdomen/flank/back/scapula and it has never left. I stumbled onto this site and tried in 11/10 to get the right test for NCS, which I didn't and received no help other than living in bed with pain meds. My adult daughter has taken over and I have an appt with a vascular doctor for a venogram. I've read that I need to be upright to get a venogram to show the problem.  Makes sense, because I feel better flat on my back.
Questions to those who have had a venogram upright or close to it. I was told they can't sedate me much because I'll fall, so it will be painful. I'm freaking out, with so much 8-10 pain level daily and as emotionally spent as I am, how bad is this test?  Has it worked best for any of you to be upright?  Have any of you been sedated and laying flat and they still found the NCS?

My daughter wants me to go to Mayo if they find NCS, I don't even know how I could make that trip when I can't get myself to the grocery store 90% of the time.

You've all been through so much and I am just so blessed to have found this site. I don't know anyone in my situation and I can't tell you what this blog has meant to me.  I'm so sorry for those trying to get pregnant and I pray your dream of becoming a mother will come true.

Also, is anyone truly fixed and better and live normal lives now?

Thank you,
Sonja

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by lucylu38, Aug 08, 2011
Hi Sonja:

The venogram isn't so bad.  When I first had it done, last August 2010, when the docs found my NCS, after you get your IV, the nurses take you back to the radiology room and get you set up.  Thy give you like a twilight sedation - you are still awake but kind of woozy in and out - then the interventional radiologist comes in and gives you a local shot in your groin and then puts the wire in for the venogram - you can feel the wire lightly moving around, but it's not painful.  I think the worst pain for me was having to lay flat on my back for 2 hours afterward to make sure the small hole they made in the groin clots itself.  Don't panic about having the test, it's really ok.  It's a 1,000 times less painful than what you deal with every day.  Also, they do tilt the table a bit, but not so much that you will fall off - I remember joking that I might slide off and fall on the floor, but they assured me that no one has ever fallen - I guess the butt cheeks keep us suctioned to the table - hahahaha.

If the docs do confirm the NCS,  there are options, like Lymeball's (pretty severe surgery) or like me - I had a stent put in during the same kind of procedure as a venogram.  Unfortunately, even though they fixed the NCS (which i never knew I had), the pain still remains.  I was being treated for interstitial cystitis this summer with no luck.  Now I am scheduled for the 26th of August for a laparoscopy and some kind of permanent sutures to tie up my vaginal wall away from my bladder wall.  The docs think I have too many big veins in between there causing pain - who knows, I'll try anything at this point.  I can say that the pain has either lessened this summer or I've just become more tolerant of it or I've tried to keep busy with my 4 kids so I haven't had time to dwell on it.  I don't know, but I'd sure like it to be gone for good.

Good luck and stay in touch.  There is a girl on here who was going to Mayo CLinic in Minnesota this summer, but I haven't heard back from her - hope she's ok and hope Mayo helped her.  I'll wait and see.

Let me know what happens with you,
Lori

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by deb764, Sep 15, 2011
Have any of you diagnosed with NCS also suffered from migraine headaches?

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by lucylu38, Sep 18, 2011
Hi deb764:

Yep, I have had migraines for about 20 years now (started in college), but have suffered from this crazy pelvic pain for almost 2 straight years.  i have surgery 3 weeks ago to help find some relief and the docs cauterized some veins around my bladder - not sure if it has been successful yet, still having issues with actual loss of bladder function - had to go to ER day after surgery and have catheter placed; now i've learned to do it on my own - really ***** - not sure what's worse: chronic pelvic pain OR not being able to pee on my own (I'm 39, not 80).

Last visit to doc, he mentioned that having the pelvic pain seems more of a neurologic issue, kind of like having a migraine in the crotch area (he actually said that) and it almost seems true.

So, yes, i do have migraines (and as for the NCS - I had a stent placed in my left renal vein last October - but even though the docs addressed the NCS, I still had the pain).

Good Luck and stay in touch,
Lori (Lucylu38)

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by deb764, Sep 18, 2011
Interesting.  So, you have not seen a change in your migraines since the left renal vein was addressed?

I had a hysterectomy in 1989 due to pelvic congestion.  That was long before there was any information out on it.  I see that now they are using progesterone to treat PCS.  Interestingly, progesterone seems to help my migraines.  I'm thinking about seeing a functional doctor to get some assistance. As well, I had a PFO (patent framen ovale) closed in August.  I really thought that might help the migraines, but I haven't notice much of a change.  Maybe it is too soon.

I wish you well.
Deb


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by ballbustersmom67, Oct 28, 2011
Hi Lymeball,

    My daughter is suspected of having Nutcracker Syndrome and after seeing several different types of doctors, we have ended up at the vascular surgeons office and are awaiting a venogram to confirm diagnosis. The surgeon is recommending surgery exactly like you have had, providing the diagnosis is correct. My daughter and I are curious about how you feel now and if you felt the surgery really helped? Also, how long is the recovery period? The surgeon we have has done this surgery twice before so I feel fairly comfortable with the doctor, I am a little nervous about the whole surgery and if it is worth going through? If you don't mind us asking, how does your scar look now? As an 18 year old, my daughter is very concerned about what it will look like after?  Any comments are welcome and thank you for sharing your experience on here and the picture.




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by garmann2, Nov 08, 2011
I am curious I have known that I have Nutcracker Syndromefor about7yrs now, the pain is horrible. I recently had an MRI done to see if the veins have gotten bigger since having my daughter 6yrs ago. The pain has gotten worse, anyway they want to try and put a stent in to see if it will relieve the pain. Has having a stent put in helped anyone with the pain or should I just try and see about having the surgery done? Not really sure on what to do????

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by lucylu38, Nov 09, 2011
Hi All:

Lucylu 38 here, although I should be Lucylu 40 - yep, it's been 2 years now since I started.  I had a stent put in my left renal vein for nutcracker and pelvic congestion - recovery was about 2-3 weeks of back pain while the blood tried to find new routes, then I was ok for a few weeks, then the same chronic severe pain started all over again.  Went to see a new doc in May, a urogynecologist, has several instillations of lidocaine and heparin right into my bladder - no help - had more tests, and finally had surgery to fool with some of the veins lying on my bladder in August.  Although I did have a horrible unexpected complication of losing my bladder function for several weeks (had to use a catheter on myself many times a day - sucked!!!), I am now able to pee on my own and the pain has subsided for the most part. I'd say I am 80% better than I was.  Doc wants me to continue seeing him for some vascular study, but after what happened after the surgery, I'm really not interested - I'll deal with the few bad days a month, as opposed to the everyday pain that I was in.

Good Luck All - if you're in the Chicago area, the doc I used was Dr. Michael Noone, out of Lutheran General Hospital.  Not the most gentle man I've ever met, but pretty successful results.

Take care,
Lori D.

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by blew_85, Dec 04, 2011
Hi everyone!

I too have recently been diagnosed with Nutcracker Syndrome and like everyone else, I'm relieved to find there are others out there going thru (or have gone thru) the same thing. I wanted to ask if anyone else had other medical issues that maybe increased the symptoms and/or pain of NS?

First, a little bit about me:  I'm 25, about 100 pounds, married, mother of two boys ages 4 and 6, been athletic and active all my life and generally a healthy person until recently.
;
My health history has mainly been great.  A couple major things I will point out are, when I was about 1 I had meningitis. I have had random cases of the flu, strep and tonsillitis. I have always had stomach issues that mainly coincide with digestion.  Like, after I eat I feel extremely bloated until I have a bowel movement. (This usually happens pretty quickly after eating.)  I always thought maybe I ate too fast or didn’t chew well enough.  I have seen a few doctors about it before and never was diagnosed with anything.
2011 has been a really rough year for me.  In April I had a collapsed lung (believed to stem from an untreated infection that wore the lining of the lung and punctured a hole in it, causing it to slowly collapse.) I had complained of chest pains and the collapsed lung went undetected on previous CT scans for at least a year. After I recovered from that surgery I started having major back pain. I had an MRI done to check it out and found out I also have bulging disks in the lowest part of the spine (L-4 to L-5 and L-5 to C-1) which I was told were minor and should just cause pain every now and then and go away. So, for the past several months I was thinking that is where my flank pain was coming from.  
I decided to go have my yearly well-women visit to ask the gynecologist to check for a kidney infection.  This is when it was discovered I had a softball size dermoid cyst on my right ovary. My gyno assured me that this was the root cause for my back pain. It was decided to do a total laparoscopic hysterectomy (leaving my left ovary so that I wasn't on hormone treatments the rest of my life) because I was thru having kids and endometriosis (uterus inflammation that can lead to cancer) runs in my family.  I just wanted to get it all out so that all the issues women typically have to deal with were out of the way.  During recovery from my hysterectomy my left flank pains was worse than ever before (and remember the cyst was on my right side).  I went in for my four week check-up and the doctor said everything seemed to be healing fine.  He mentioned that I had a small cyst on my left ovary but it wasn't big enough to be causing all the pain I was in. I also had a pretty severe discharge that wasn't normal.  He gave me some meds (flagyl) for yeast-type infection and said come back in two weeks and try to see another doctor about the back pain.
I went to see my family doctor about the back pain and he ordered me to have a pelvic and abdominal CT scan done and in the meantime he gave me a shot of B-12 (for energy, because I felt fatigue ALL the time) and a depomedrol shot to beat any infection I may have.
My CT scans came back and (after a second review) showed that I had Nutcracker Syndrome. It also showed that I had a lot of large varicose veins in my upper pelvic area and that my kidneys were using those as an alternate route for my blood flow. I was put in the hospital immediately to start getting tests ran and see a vascular and nephrology specialist.  I was given steroids and vitamins as a precautionary measure.  I had a radioactive renal ultrasound done to see how my kidneys were functioning and they were working perfectly.  Because the doctors I saw have either 1. Never heard of NS or 2. Heard of it once in their entire career, they all want me to see a specialist at UT Southwestern Medical Center in Dallas, TX.  I was given some pain pills and muscle relaxers to manage the pain.  I was told because I am so slender that I should try to gain about 10-15 pounds and see if that helps at all.  I was given megace to stimulate my appetite and I have been eating as much as I can possibly stand and I have gained zero pounds.  I have always been small in stature and I have never dieted, counted calories or watched what I ate.
I saw the vascular surgeon in his office last week and he did a sonogram type test (can’t remember exactly what it was called) that showed the blood flow and pressure (in color) as I lied down, sat and stood.  It concluded that my left renal vein was open a tiny bit at its compressed section.  It was not completely compressed. This was in all positions.  However, I do have the worst pain when I am sitting down.  They believe that is because all my insides are in a more compressed position.

All of the blood work and labs I’ve had done recently have been normal.  I’ve had my thyroid checked and it is normal.  I did have a trace of puss in my urine culture and was treated for that in the hospital the last time to kill any infection that it may be a sign of. My blood pressure is usually on the low side (99/66) but everyone has considered that to be my normal.  I have lightheaded spells while sitting at my desk at work about 3 times a week where my hearing zones out and I feel as though I am about to black out.  They usually last about a minute and then I am fine again.
I am sorry for giving my life-long medical history and SO many facts but I only do that because I am wondering does anyone else have any similarities in the medical history I have described above???  I would really appreciate any and all information that anyone thinks may be of the slightest significance.  They say that a lot of people may have NS and never even know it.  So I’m thinking that maybe my pain is not from NS alone?  I have never had blood in my urine which is also a common symptom of NS.
Sincerely,
BLEW



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by lucylu38, Dec 04, 2011
Hi BLEW:

So sorry to hear of your craziness!!!  Believe me, we've all been there, and some stay there.  I just turned 40, but up until having 4 kids, I was always under 100 pounds, now about 115.  My pain was always worse when sitting because of the pressure and stopped blood flow.  It was easier, less pressure, when standing, but very tiring after standing all day and night.  My bp has always been low too 90s over 50s or 60s like yours.  After 2 years of going from doc to doc and several procedures and surgeries, including a stent placed in my left renal vein, I had a rare surgery in August 2011 where the docs dealt with several large veins running along my bladder (the stent never helped my pain - I didn't even know I had Nutcracker - it showed up on a venogram) but since healing and recovering my lost bladder function (sucky side effect from the surgery) since October I feel pretty good, only a few bad days here and there, not like allday everyday as before.  Unlike you, I always have a little blood in my urine - docs act like it's not a big deal.  So at least you don't have that.  Good luck with all of your healing, and your continuous search for answers, and the exhausting job of being a Mom especially when you don't feel good - I know, I've been there, Thank God my 4 kiddos and husband were so understanding.

Take care and feel free to keep asking questions,
Lori

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by blew_85, Dec 05, 2011
Lori,

Thanks so much for the response and info!  You have no idea how much I am relieved to find that I am not alone with this.  I'll post updates and I'm sure many, many more questions :)

Thanks again,


~BLEW

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by mirancer, Jan 29, 2012
hello everyone.  I was just recently diagnosed myself with nutcracker syndrome.  I had a vericocelecotmy about 8 years ago and about a month later after I  was getting left flank pain.  Doctors thought it to be IBS, but they did a lower and upper colonoscopy and found nothing.  Pelvic MRI showed nothing also.  Then I had abdominal  MRI / CT scan done.   When I got my results back it read just like the notes that I had researched on my own.  Now my question to any and all who have had the surgery done,  could you please tell me what procedure you went with and if it eliminated the left flank pain?  I'd like to hear back from lymeball specifically since she has had this done well over a year now and let me know how things are going now and since she lives in san Diego as I do.  I plan to take as much ammunition with me to my Dr to finally get rid of this frustrating pain.  Thank you everyone for your replies.

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by smileyhelen, Jan 31, 2012
Hi I live in the UK - is there anyone here who has Nutcracker syndrome? I was diagnosed last week and my dr knows noone else with this condition.

Thanks
Helen

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by mirancer, Feb 03, 2012
smiley: it seems that most if not all of these people that have posted here have or had nutcracker syndrome.  I myself was just diagnosed with narrowing or compression of the left renal vein  between the aorta and the superior mesenteric artery.. I actually have a Dr. Appointement  today to see what the next course of action is to relieve my chronic left flank pain due to NCS.  From all the information that I've gathered there are quite a few options to treat NCS.  NCS is also a rare  and under diagnosed syndrome. My best advice to you is to google nutcracker syndrome and gather as much information about it and then take that information to your doctor.  Here is a web site that I think would be useful to understand NCS. WWW.Phlebolymphology.Org/2009/07/nutcracker-syndrome/ I hope that helps you out.  Good luck and keep us up to date.


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by lucylu38, Feb 09, 2012
Hi New Ladies:

I did have nutcracker, and had a stent put in in October 2010.  I didn't have left flank pain, but did have severe chronic pelvic pain, and through several venograms, doc found I had nutcracker.  So they put a stent in.  But the pain never went away - so they fixed something that I didn't even know I had and not the real cause of the pain.  I went to a new doc after that, a urogynecologist, and more tests and procedures, and finally surgery in August 2011, and I would say I have 6 good days a week, with pain levels topping out at a tolerable 2-3, as opposed to the levels of 10 every day for almost 2 years.

You are right, you need to keep researching on your own, unfortunately a lot of docs aren't familiar with any of this.  Keep at it and hopefully the pain can be managed (I can't say that it ever goes away completely, but to get it at a tolerable level is what I focus on).

Good Luck,
Lori

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by puddingirl, Apr 05, 2012
Hi,
I just found this journal and hoping for help................

I tested positive for nutcracker via ultrasound - flank pain, pelvic pain, blood in urine.
the urologist told me I was too thin and needed to gain weight and that was the only cure.
This was about 2 years ago. About 6 mo ago I went back due to pain and he  tested again and said the following:

I No longer have nutcracker. (he made me feel stupid)
Anyone know if this just goes away?

For the lasts 6 mo, I've been having treatment for urinary stricture.(this is with my Gyno - not urologist)
The pain in my pelvic, flank going down my left groin is now unbearable -


help me please with advice? keep with gyno or go to urologist

puddingirl

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by MaritaLMP, May 31, 2012
This site has been a god-sent for me!  Thank you so much to everyone who has shared their experiences.  It really helps me with my decision--I've been seen by Dr. Meissner in the University of Washington Vascular Center, who sees 1-2 Nutcracker cases a year, and I'm scheduled for a pelvic venography on June 12th.  The doctor gave me the choice of either putting in a stent to open up my left renal vein during the venography if it's even possible or waiting and doing an open surgery to move my left renal vein down so it's no longer compressed by my SMA and aorta.  I am 33 and have not had children yet but would absolutely LOVE to be a mother someday, so I do want to pick whichever option is best for my future children.  It sounds like the open surgery is best for that and that stents are better for men with this problem or for women who have already had their children.  If any of you have chosen to have the open surgery, how long were you off work?  The doctor said it's a 6-week recovery but couldn't tell me how long I'd be off work because it depends on each person, but I'd still like to have an idea at least of others' past experiences.  Also how long until you felt like you had your normal energy levels back?  I'm thinking 3 months.  Thank you again for sharing your stories here!

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by cheercoachlouise, Jun 24, 2012
Hi,
I have suffered with abdominal, flank & pelvic pain for over 20 years. I am 40 years old now. I was diagnosed with pelvic congestion syndrome about 12 years ago. My gyn & an interventional radiologist placed coils in my pelvic veins to help relieve the pain. That did not work and I did wind up having a hysterectomy 10 years ago. I have suffered with pain on & off for the past 10 years. 2 years ago I started with kidney stones. I have had several ureter stents placed and the urologist has sent me back to the gyn who originally placed the stents and did the hysterectomy. He believes that I have Nutcracker syndrome. I am scheduled to have a renal venogram with possible stent placement on Friday. I am very nervous and worried that this will not be the end of my pain. It has been a relief to read that I am not the only one that has suffered with this pain.  How did you feel initially after the venogram? I am worried about the pain levels during and after the venogram. Anything you can share would be great! Thanks!

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by Kiwi_boy, Jul 20, 2012
Hi,
Im 25 and have had M.S. for around 8 years,10 day ago i traveled from new zealand to the states to have my veins cheaks out for CCSVI(  Chronic Cerebrospinal Venous Insufficiency ) which has of late been suggested to possably have a relationship with MS , during the ultrasound it was noted that there was much narrowing of my jugular veins, my azyous vein and also that i had a nut cracker. An angioplasty was preformed to clear the jugs and azo and a stent was put into myleft renal vein, I have noticed a significant reduction in fatuige since the operation and my balence has improved much to my excitment,however only time will tell if these improvements will last. after the op however i suffered from quite severe lower back pain from the stent, to the point where over the counter meds were not working and i was prescibed a much stronger narcotic med , 1 week on and im still experiencing the back pain when not on the drugs, more or less to the same level of pain, i dont want to be on these pain killers for too long as im aware they can be slightly addictive and the last thing i need is an addiction on top of my existing problems. how long will this pain last ? is this normal, the doc insinuated the pain would hang around for a few days and im starting to get a little worried. If anyone could help me understand this it would be much appreciated. Thanks,  Christopher  

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by jillysmum332, Apr 04, 2013
Hi Eveyone,
I have just found this site, my daughter Jilly has been in terrible pain since she was a baby(now 25) she even had an abcess on her kidney at 6 months old. At the age of 18 she was tested(a blood test) forNC at her renal unit and it was positive.After a MIR scan she was told that if she didn't have an autotransplant she wouldn't live much longer as the artery would burst. Apparently her kidney is back to front and was strangeling her stomach,liver and left overy. From puberty to now she has only menstrated about 9 times. At the age of 19 she fell pregnant and called the baby Elijah as docters had told her she'd never have kids. She had the transplant at 21 and they said her arteries and renal vein would not havel asted more than 2 months. Her health has improved and the odema has stopped but she is still in constant pain,doesn't ovulate and has kidney and bladder infections that are so bad she is hospitalised. My daughter is desperate for another child and it is a comfort to find that a lot of you have kids. It is really a rare condition in Scotland and none of the doctors know anything about the condition but reading your posts is like listening to her.If it is any help my daughter found that cutting dairy and wheat from her diet lessened the pain and infections-I wish you all well, thank-you-Jilly's mum

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by AtLASTaDIAGNOSIS, May 15, 2013
Hi everyone,
Thank GOD I found this web-site and especially this thread. I was diagnosed with Nutcracker Syndrome this last Friday. My Doctor is working with the Mayo Clinic in Minnesota to try and get me there for surgery. At this point, that is all I know. This all started in April 2012 and has been a very long and painful 13 months. I have Pyelonephritis, a complex cyst in the upper pole of my right kidney and malformation of my right kidney due to scaring from a cyst that had to be drained. It was the size of an apple and infected with Ecoli. Over the last 13 months, I have been hospitalized on multiple occasions, taken more antibiotics than I can keep track of, lived with intense pain and have gained 20 pounds. I am unable to work out due to the pain and it's totally depressing. Can anybody offer me words of advice? I'm thankful for the diagnosis, but scared of what the surgery will bring. Please.....HELP ME!

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by Mckenzey, Jun 03, 2013
Hello everyone. ThankGod for this. I was feeling all alone. There are so many responses to Lymeballs post and I have not been able to read them all. I am confused and exhausted. I've Ben sick since December 2012; however looking back now I see I had signs before then. After going to several physician assistants (8), three hospitals, and three specialists I was accidentally diagnosed by a radiology doctor. I had nausea, extreme fatigue, extreme constant urination (weak bladder), severe pain in lower back and front abdomen, which gradually got worse and felt pain all down my left leg, and sometimes my shoulder, hip, and knee hurt. I thought maybe it was arthritis or joint issues, even thought it was my kidney. It got so bad that I had to use a walker. I had several X-rays  and cat-scans. It wasn't until they did an ultra sound that I was diagnosed. I'm hearing things such as chronic pelvic congestion, nutcracker, and left ovarian vein syndrome. I've also had abdominal irritable bowl syndrome (colitis) and had a coloscopy done in which nothing was found. I was diagnosed also with fibroid in uterus and now a lump in my left breast which is being biopsies next week.

I am so stressed with the lack of time I have and no answers on what is the best surgical decision.the radiologist wants to close off this vein and says its a simple procedure, but he's only done 30. After hearing some of your comments I'm not sure what the answer is. I'm on leave from work since February. At first doctors were telling me it was in my head and to go back to work. They wanted to give me depression pills, which now might help because I'm really scared and lost. The embolization is scheduled for 06/12/13. Does anyone have suggestions? I went to a gyno specialist and he said he would not recommend the surgery. Now I month know what to do. If I shut off the vein then where will the blood go? Then he said my ovary may die. I hope someone has some good medical info from their situation that might be helpful.

My life I had is gone. I'm suppose to return to work 07/01/13. This is too much. Everyone take care. My thoughts are with all of you and your families

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by Mckenzey, Jun 03, 2013
Also I am 43, had three children out of four pregnancies. My third birth was a c-section. I have been healthy up until about October of 2012

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by evaspencer888, Jun 13, 2013
Hello all I was just diagnosed with Nutcracker Syndrome 2 weeks ago and have had nothing but bad doctors!! I have chronic pain, migraines, extremely PAINFUL periods (3 hydrocodone 10s barely help)... My most recent symptoms is constant yawning attacks usually I suffer with them 5 out of 7 days a week. I feel as though I cannot take a deep breath and it is getting very annoying and scary. I also cannot actually complete my yawns.. Does anyone have this??? Also I spend a lot of time trying to pee but can get little action though I feel as though I really need to go. I am 32 female and I am in school. Oh and I fall asleep a lot, even while standing up. I am extremely active and run an animal rescue so I am frustrated... Also my family thinks this is a BS diagnosis which I have made up to get attention! Frustrated so much I just do not know what to do I feel completely alone. PLEASE tell me if you have these symptoms!!!
Thank You!!

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by ncsannie, Jun 30, 2013
My daughter has had Nutcracker Syndrome the past 4 years. It took 18 months to get a diagnosis and we had to go to the Cleveland Clinic since the nephrologist and urologist in Dayton Ohio couldn't figure out what caused her symptoms. She has had gross hematuria but, fortunately, no pain. After two years of on and off hematuria, the blood loss became much worse and she became severely anemic, requiring blood transfusions. A vascular surgeon at the Cleveland Clinic stented her left renal vein. The gross hematuria stopped for 2 or 3 months and then started again. The past several months its gotten progressively worse and she is now mildly anemic again. She complains of fatigue and sometimes lightheadness from the anemia.
We're asking the doctors to suggest other options, in case the blood loss continues to get worse.  If anyone who has had major surgery to reroute the left renal vein can let us know how that worked out long term, I'd appreciate it. My daughter is about to turn 20. I don't think she has gynocological issues (pelvic congestion) but we haven't checked into that. I worry about the risks of major surgery and whether it's worth it. I've heard it doesn't always work or may work only temporarily.
Thanks for any information you might have.


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by evaspencer888, Aug 31, 2013
Hello all,  I went to the mayo clinic in Fl. and they were terrible I actually had a nurse throw my iv bag (I was attached) and tell me if I took more then 20 min on the toilet she would rip me off of it. This was after I had a cystoscopy which makes it feel like you are peeing razors and glass!!!! All of my tests and symptoms were positive for NCS. Then I had the venogram done but only while lying down and I had an anxiety attack so I was not able to hold breath or push... I measured a 2 so my doctor will not do the surgery. My pain goes away when I lie down so why would they only d0 the test this way?? Makes no sense please help!!! I will fly anywhere in US at this point for a good doctor because the pain *****.
*** Oh and the constant yawning and not being able to catch my breath from walking a few steps does anyone get that? I am in great shape and I was passed by a 99 year old in the grocery store today not good!! Please let me know about these weird symptoms:)
Thank you all for sharing and may your baby dreams come true (perhaps they already have)

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by laurabrookebelle, Oct 12, 2013
Hello everyone,
     I was recently diagnosed with nutcracker syndrome. It was a long haul of pain and drs thinking im crazy! Its just so hard when we dont kno or understand what is going on with our bodies. I have everything from sever dizziness, constant pain in pelvis back and legs, stabbing pain in lower left and right sides, pressure when standing or going to the bathroom, feelings of high blood pressure that my head is going to pop off, chest pain, pain when breathing, heavy periods, nausea, pain w intercourse, complete exhaustion just walking upstairs, fatigue, ahh there are so many more! I finally found a dr that has treated this he is in tucson az at the university of arizona medical center. I go next thurs to get my surgery date and options. I hopefully wont have a huge scar but do not know yet. Its nice to know I am not the only one.

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by brownboy78, Nov 11, 2013
Hi someone please help I'm so confused my son is only 8 years old and has been diagnosed with nutcracker syndrome I don't know what to do he has pain like four day out of the week I have no knowledge of what this is please help I have four other children although he is my baby I suffer from anxiety and insomnia cause I find myself constantly checking to see if he is ok as he sleeps sos

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by laurabrookebelle, Nov 26, 2013
Hi there! I posted right before u did and am recovering from my surgery. I went to Dr. Magdiel Trinidad in Tucson AZ. At University of Arizona Medical Center. He is great. Nutcracker is when the renal vein is pinched and all the blood is kind of pushed down towards the kidneys groin and lower body. I elected to get surgery instead of the stint because it is more effective. I hope your little boy can get some help! I look forward to hearing back from you!

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by georgeogrinja, Feb 06, 2014
I was diagnosed with NCS.

Two questions:
1. What is the best intervention? Surgery or Stenting.
2. How long does the surgery recovery?
3. Where intervention may be carried out in Europe?
4. What are the costs if my country insurance is not accepted?

Thank you my friends in advance for your information.

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by georgeogrinja, Feb 06, 2014
I was diagnosed with NCS.

Some questions:
1. What is the best intervention? Surgery or Stenting.
2. How long does the surgery recovery?
3. Where intervention may be carried out in Europe?
4. What are the costs if my country insurance is not accepted?

Thank you my friends in advance for your information.

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by AriaKim, Apr 02, 2014
Does anybody have any recommendations on experienced physicians on Nutcracker Syndrome?  I had a recent CT scan done due to symptoms.  The CT came back saying I have nutcracker syndrome.  The doctors here keep passing me around as they do not know what to do or who should see me.  I am at a loss right now.  Thanks.

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by divineguidance3443, May 30, 2014
DR. PETER GLOVICZKI : VASCULAR AND ENDOVASCULAR, Specialization in  Vascular Malformations. Rochester, MN, MAYO CLINIC, GONDA BUILDING  

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by divineguidance3443, May 30, 2014
I'm having the same surgical procedure done as lymeball. Dr. Peter Gloviczki,  although rare ; deals with this NCS daily. I will post and let all on here know who surgery went, and information on my recovery ; as well as any issues that my occur- in the efforts to help others with understanding cause symptoms effects - side effects, and education purposes. If anyone has any questions, I will be happy to help; in anyway I can.  
What is associated with NCS signs symptoms and side effects I will post tomorrow :-) Goodnight and Thank you I hope I can help one  person

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by divineguidance3443, Jun 01, 2014
Symptoms include but not limited to, left flank pain, by your waist, blood in urine, feeling of urgency to pee, like UTI symptoms, I also have pain in my left side in the groin by my left ovary, I also have had chest pain, courseing of my heart, issues with my bowels fluctuating from one extreme to the other very very constipated and then I'll have extremely loose stool,  I now have pain in my left dullest and pain in my legs mainly in my hips and inner thighs I also feel like the sciatica nerve is being pinched cuz I'll get this on both sides, running down the back of my legs. no keep in mind he met her in my urine has subsided and all the symptoms fluctuate they come and go everybody is different but this are the things that are happening with me I also have had respiratory issues. I also have dealt with several several doctors to them thinking that I'm all crazy I meant until the point that they did find this and that was with my continual pushing and nagging and telling them no I know my body there is something wrong with me and I continue to push to see different doctors. and yes I did throw up back in the doctors faces, I wasn't so blunt-  but I did make a point of letting them know.... I was right and they were wrong,  there was something wrong with me. my continual persistence paid off!!! I think God that I listen to the intuitive feeling I was having and listen to my body, I hate to say it but sometime  the nagging and pushing dose pay off.  thank you God thank you!although I'm scared I have to take the next step of faith... Surgery! please keep me in your prayers and thoughts to whom ever reads this my surgery is on June 9th 2014 pray that everything goes well for me , and hopefully if you hear back for me I will be able to tell you everything that has happened in my recovery  

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by Mypaulat, Jul 07, 2014
Hi,
I am very new to this site as I was looking to find other people have this rare condition called Nutcracker Syndrome. Was diagnosed in January 2014 at Mayo Clinic by Dr Peter Gloviczki. I have never experienced any pain with this condition.  My symptoms  have been  gross hematuria resulting in chronic iron anemia, fatigue and need for blood transfusions from time to time.  I was given 2 options to consider , Endovascular Stenting or Open Surgery where by them transposition the Left Renal Vein. After consulting with various doctors over the years back home in New Orleans, my condition went undiagnosed for roughly 30 years.
I like divineguidance3443 am schedule for surgery August 13,2014 at Mayo with Dr Peter Gloviczki.  I am extremely interested in hearing back from her on how things went and her continued recovery.  Please contact me if you can .
Wishing everyone well.
Paula

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by medika, Jul 15, 2014
hai eveyone..hows lymeball  and Lory D now? are  everything getting well? just nice to read both of your conversation :)

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by divineguidance3443, Jul 15, 2014
Hi Paula contact me ASAP
email is same as my profile name but gmail.com
surgery went well and things are going good would love to speak with you! I will provide all details and pictures once I know how to upload a mani here as soon as I can very busy, I'M 5weeks into recovery .

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by divineguidance3443, Jul 15, 2014
Lol , to all who has read my June 1st post, I apologize for all the discombobulation in my paragraph. I hope everyone can understand what I was trying to convey.
Very poorly written- sorry!

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by divineguidance3443, Aug 17, 2014
Hello everyone! So far, so good... Im 8weeks into recovery. Its sooo AWESOME to start feeling healthy.... I forgot what it was like!!!
"Im pelvic congestion  free" woohoo...
                 Thank you God!!!!!!!
I have been contacted- By other individuals; seeking help, questions, answers,and direction... I truly feel it's a blessing that I have been divinely guided to share with others; my experience!!!
What a true gift, the Lord has gave me!!!
To help someone else out, in anyway;
is amazing and extreamly self rewarding!!!
I get to meet Mypaulat tomorrow, I'm very excited!!! Please contact me, if anyone has any questions... stay healthy, take care and God bless everyone! Ill post again soon.

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by jlentz9684, Sep 10, 2014
Hi everyone. I have been diagnosed with nutcracker syndrome after years of pain and ovarian problems and endometriosis. I am getting so discouraged on how long its taking to get answers. The pain has enabled me from working as much as I used to. Shooting pains down my left leg, im keeled over in pain in my pelvis.  Lower back constantly in pain. I cry literally every single day of not getting answers. Please tell me this will get better and there is answers. Im going to the vascular again tomorrow in hopes I will finally get an answer. Is there something I should ask for? Thank you!!!

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