Too soon to schedule surgery??

I was just diagnosed with CM last month out of nowhere. I have had the headaches for 7 years but the last 1-2 years have been have a lot of thr neurological symptoms. I am nauseous and exhausted, have developed hofman's and bobinski reflexes, And the choking is really progressing fast as well as the double vision. I work in a spinal clinic and had one of the P.A.s order a CSP MRI and that's when I was diagnosed. I have seen two NS and surgery was ordered and scheduled for 12/2. I work 6 days a week and am a very single mom of two young girls. I am hoping I am not rushing into this and am very nervous about complications. Am I doing the right thing??

[selmaS]

  Hi and welcome to the Chiari forum.

Well, are ur symptoms affecting ur quality of life?...and ur overall health?

Are ur Drs true chiari specialists? This is a major surgery and can leave u with issues post op u did not have b4.....

Do u know if u have ne of the related chiari conditions? like a syrinx, tethered cord, sleep apnea, disk issues, ICP, ehlers- danlos....??

  Have all ur levels been checked...Vit D, B12, magnesium and potassium?

  Depending on what u do at work, daily duties, u may not be able to go back for some time post op....some Drs will give a time frame that is not reality.

  The issue with this condition is, too many run to the first NS's they know feeling they r in good hands, but I feel u should make sure u r going with chiari specialists...drs well experienced with chiari and related conditions...

  JMHO

  "selma"

[XenWarren]

I would echo selma's question about related conditions like syrinx, tethered cord, etc. Your recovery should be much easier if those aren't factors. And yes, I believeit is worth it to travel to be treated by a Chiari specialist.  

I put my surgery off six weeks (had a fully paid NYC vacation I was splurging on) and to the mountains of things that have to get done beofre recovery.  I sent three full weekends working with spouse to cook and freeze high protein, veggie-laden, soups and stews (great when your head is sore and perfect for healing the soul). Did the crazy deep clean on teh house for the rotating groups of neighbors/friends caring for the pets while I was out of town, busted butt at work to get everyone up to speed so I go FMLA for a few months.

A week before the surgery, I ended up in the emergency room with the worst headache/seizure/drop attack I have ever had.  I was released because I was seeing my surgeon in Houston the next day.  His statement was that it really couldn't be put off and we need to get it done. It happened on November 7 and I think I am doing better than I ever could have believed.

Let me state again - I did not have any compicating factors. Just a 20 mm chiari that was recently stopping my breathing, but had been giving me vicious headaches for 20 years. It had become some commonplace it was my normal.  I didnlt know there was a reason to complain.  But the craniotomy, laminectomy, and duraplasty was the right choice for me.  I honestly wonder if I'll need a full two months of work.

[linnielou232]

I agree with the other's.  Please be as informed as possible and don't just go to 1 doctor to make your decision.  I acturally went to 3 before I found one that I trusted and felt confortable with.  As Selma said the recovery for some are difficult.  It is so refreshing reading  XenWarren recovery because he is doing very well.  For other's inclluding me I went through 4 surgeries 3 on the head within 4 month's due to complication's.  It's nothing we mention to scare you just want you to know the reality and the possiblities of what could happen.  As for me I took every thing into consideration, and the 1 thing that helped make my decison was the doc asked me what my quality of life was like?  I couldn't even think any more due to the pressure headaches, and I had no life other than a bed and heating pad, but having the complication's that I did have.  I can no longer return to work, and just adjusting to a different way of life. Having surgery is not a cure, but it does help, and I don't regret having it done.  As the doctor said.  If you are in good health now then have it done because the healing time does help.  I just wanted to let you know the pro's and con's that go into having this surgery, I'm sure it is like that having any surgery.  Justing being informed and knowing the possiblities is the best.  I whish you the best in this decision because I know it is a hard one to make.  We are all here to surrport you and to answer any question's if we can.  As XenWarren said being prepared before surgery and having thing's done before hand does help.  Keep us updated on your decission.  You are not alone in this.  

[amelia133]

I too feel rushed into surgery as I was only diagnosed less then a month ago and my surgery is next week.

I currently have nowhere to live (going from room to room with friends) and my family has fallen apart - but aside anything health comes first. Don't worry over other struggles and put your health first. If Chairi is affecting your life so much you need surgery then you need to consider it, but spend time thinking about it.

Know how you feel - life is hard when your very single! even more so when you have chairi x keep updated

[linnielou232]

I tried to send you a PM but for some reason it wouldn't let me.  I just wanted to let you knw your in my prayer's.  I can't inmagine going through this surgery not knowing where I was going to go afterward and having your family is such a mess.  Never forget you always have a family here.  If you lived closer my door would alway's be open here for you.  I know my heart is.  Stay strong.  Thing's will get better.

[amelia133]

Thankyou for being so kind it means everything! can't describe how much of a blessing it is to come here and have people care that know how you feel ! Take care yourself !

[selmaS]

  Know we will keep u in our thoughts and prayers for ur upcoming surgery, recovery and family issues : )
'

   ((( hugs))) <3 and prayers

[Sexybare]

you are in my prayers for a safe healthy surgery and a speedy recovery. the dr wont let you go without someone there to care for you. make sure they know your home situation before you leave. as the hospital wouldnt let me leave until they knew i had someone at discharge and at home to help me. good luck. things can only get better from here :)

[Amanda_ACMI]

Do you mind telling me who did your surgery in Houston?

We just moved here about 10 months ago, and I wasnt expecting to hear those words "brain decompression". I was diagnosed 5 years ago, at 2mm, and started having recently worsened symptoms, went to see an internist because I had what felt like pressure in my sinuses, eyes, and across the bridge of my nose. Accompanied by blurred vision.
The internist with her naked eye saw fluid and swelling in my "optic disc". I then went to see a neuro optomologist (sp?) and she ran a battery of tests looking at Psuedo Tumor Cerebri, or MS. ( was tested for MS 5 years ago when Chiari was found).
After months of this dr, and that, I found myself sitting in the neuro surgeons office, Dr. Kim. And was told without any further testing it was all Chiari induced. I have damage to my optic disc, due to pressure build up of fluid behind the eyes. The dr, then informed me that my Chiari was now at 7mm instead of the 2mm when discovered. Is that normal? My thing is that I have been dealing with the weird odd your crazy symptoms since my daughter was 2 and she is 13 now. I have been from dr to dr looking for answers, getting false diagnosis and now that I have one, Im having a hard time believing it!
They wanted to do surgery back in August, but was too scared, and wasnt convinced.I guess Ive dealt with these headaches and other weird symptoms like tingling and slight numbness, and so many more that I couldnt believe that this could cause all of that.
So, Im reading , researching and Im seeing so many symptoms that were attributed to false diagnosis, and Im shocked reading all these that are posted, because they sound so much like me. Down to the sitting in your chair and all of sudden you feel like your "rocking" back and forth. Chiari does all this!!!????

So, I cried... Because it is scary. And I have 4 kids, and I have a husband , and etc.. etc... but I do understand it can get worse, as Im told and over time this tingling etc.. will be irreversible. And then Im seeing some people dying from this??!!?? Its so emotional. And this week, has been one of the roughest weeks Ive had in a long time. Alot of stress, and a headache everyday..... Plus I dont know if I have a syrinx, tethered cord, sleep apnea, disk issues, ICP, ehlers- danlos....?? I dont even know what half of  this stuff is??

Thank you for listening, would love to hear your input,

[linnielou232]

We all know exactely how you are feeling right now.  I never heard of Chairi before until I was told I had it and when I came home and started doing research which sound's like where you are at right now.  I know how scary this can be.  It is a scary surgery, but I did after many visit's and research We found a doctor we felt comfortable and trusted and went ahead with the surgery.  Having Chairi is a life altering thing.  I have found this out and it is difficult to adjust.  I was where you were at when having surgery.  I wasn't living life because the pressure headaches got so bad.  So after having surgery there was relief.  As for me I had to have 3 head surgeries before it was finally fixed due to my body kept rejecting the stitches in my head and caused CSF leak's.  So there are complication's but there is in most surgeries.  Do your research and you will find the help you need.  Just know you are not alone in this.  I have been where you are at now.  I am now 16 months post op and still have issues that I am trying to deal with, but we all heal differently.  Age, health, etc has a lot to do with recovery so you have to put every thing into prospective.  Just know we are here for you.

[Amanda_ACMI]

Thank you so much,

This is hard... and I am amazed at how we all differ, yet are the same.
I know in time this will have been  the best answer, to all my issues.. It just scares me. Im so sorry to hear you did this 3x's!! How did you ever manage!!?? Thats the stuff that scares me.. I know, and Ive been told this isnt a cure , just a solution to symptoms and its not a guarantee.
I feel better knowing and reading of all the success stories. Im going to keep praying and allowing God to lead me through this all. Because I cant do it in my own strength.

Hugs
Amanda

[XenWarren]

My surgery team in Houston was led by Dr. **** Kim.  He, and one of his partners, are listed as Chiari experts on the list here at MedHelp.  He says most of his work now is repairing decompressions done by other surgeons (who often take out too much skull, giving the patient a whole new set of problems

I saw two other doctors back home in Austin but knew INSTANTLY that Kim was my guy.  With all my heart I recommend this man and his team. Dr. Kim is the surgeon who was in charge of Congresswoman Gifford’s surgery and recovery earlier this year.  He is too polite to say it, but this is the easiest procedure he does. Also he is compassionate, funny, and supportive throughout.

I had surgery on Nov 7, was out of the hospital on Nov 10, took an hour walk around the Galleria yesterday, bought a great sweater and helped fold clothes on the couch last night.  Seriously. And I'm off the pain meds.  I'm in town until Nov 22.  If you want to get together to look at the scar, or ask questions, send me a private message with your phone #.

[linnielou232]

I love hearing how well you are doing.  I didn't realize that Dr. Kim was the surgeon who took care of the Congressworman, just watching the series on t.v. with him you can tell he know's what he is doing.  It is funny but finding the doctor that is right for you I say.  You can feel it in your heart when you know it is right.  I just love as I said how well you are doing and it is inspiring knowing that people can bounce back like you.  I felt I was going to do the same, but God had different plan's.  Isn't it funny I love how you asked Amanda to see your scar.  Do you realize after surgery you are considered a zipper head? LOL.  Thing's we look forward to.  I justed wanted to share in your encouraging word's.  Keep up the good work.  The 22 is coming fast and you will be home soon.  I'm so happy for you.  What a wonderful blessing it is for you for Thanksgiving.