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Pain
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Pain

I just had surgery on the 13th. When walking or moving aroung for about 45 mins,I feel  intolerable pain, and a warm, sensation in my lower back. I could barely stand it feels like my lower back has been beaten up. I did not have this before surgery. Any suggestions as to what could be wrong?
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1306714_tn?1327260680
We don't realize after having this surgery what it does to our bodies.  Being up and about for 45 min and just having surgery I would guess your body is telling you to rest.  Have you been drinking a lot of water?  I know I am not really good at this, but I know it is important.  That might be why your back hurt's.  I say REST, REST, REST.   I know it isn't easy ecspecially this time of year, but very inportant for you right now.  Try using a heating pad on your back for 15 min.  It might help.  Wish you the best.  Get some rest  :) Linda
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620923_tn?1392844218

  Hi and welcome to the Chiari forum.

Were u checked for tethered cord b4 u had surgery?...many times those with TC, post op from PFD surgery they can experience more pain and issues....it is too early to know for sure as linnie said u need to rest, rest and then rest some more.....

This does take time,and u may have some pain and symptoms as u heal as the nerves bcome active again.....

       "selma"
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1956614_tn?1325869001
Thank you so much for responding!
I am totally resting its just really strange to me because i could have slept all day and then I get up walk around or stand around for a small window and that burning sensation in my back, begins. Along with severe throbbing pain, it's terrible literally, I can then no longer stand or walk.
Once I sit I am still in pain but it subsides after am resting. I am very worried about this. I see my doctor tomorrow. I will ask him about the tethered cord tomorrow. I know my MRI of spine showed I had several herniated disk .thanks for writing its great to hear from people that understand the feeling.
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  Bulging disks can affect CSF flow just like the herniated tonsils did...and that can cause many of the same symptoms...but, many of  the nerves may have been compressed or pinched and after u release the pressure by having the surgery it is possible for some activity to come back to them....

I would also have ur Dr check those disks, I have a bulging disk that shifted post op....

    "selma"
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hi selma, i read your journal about your surgery! wow, you have been through so much. i cant imagine.
how are you doing now? do you regret doing the surgery?how has it affected your life?
i went to the neuro today, and explained the warm sensation, and extreme lower back pain, as well as pain in my knees. his answer"well i dont want to tell you, your gonna need back surgery, so lets give it a few weeks. i hope this felling eventually goes away. on your journal you wrote about how you found yourself looking for some were to sit at when shopping. how are you doing now?

i also wanted to ask you, how did your scalp feel after surgery. i feel like the back of my head is not my own, it feels swollen, and like theres some kind of material under my scalp. while the top of my head feels numb.

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620923_tn?1392844218

  Hi, I am doing ok...I do have other chiari related conditions that cause me issues now that I am post op...like EDS, I get joint pains....and I have bulging disks as a result and I have to be careful with my neck as I can move a certain way can have drop attacks start all over again....for this reason I do not drive....do not work....

I do not regret having the surgery...not sure how bad I would be if I didn't have it....

The need to sit when out shopping is due in part to my lower back and legs, which again is a related chiari condition tethered cord....I did not have that surgery yet, so I still do not like to go shopping for too long.

How ur scalp feels post op is pretty typical....I would suggest u try not to wash ur hair too often as it can dry the scalp and pull at the scar...I was also told to use J&J baby shampoo as it is gentle.

Hope I answered ur questions...if not reask....lol...
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it sounds like it dosent get better. i for once can't sleep , i just cant seem to get conftorable, my neck and shoulders feel stiff. i have actually even tried laying on my back, but then in the morning, my incision looks a little bloody.
this pretty much *****.
i need some motivation!!!! i am suppossed to return to work in february, will this really happen?
thanks

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620923_tn?1392844218

  Try lying on ur side, and place a rolled up blanket behind u to keep u from rolling that way u r not oh the incision....sleeping is a issue for most of us....and it took time for me to be able to sleep better....do u take B12, Vit D and magnesium and potassium supplements?

Does the incision actually bleed? or ooze? if it is just a little bit it may be nothing to worry about....ask ur Dr about a topical antibiotic ointment to keep it infection free.....

  Are u doing the neck exercises??

     "selma"
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yeah, i lay on my side, its just not confortable, anymore. its just a little bit of i think oozing, the neuro said to not put anything on it. he said if it wasnt gone by neck week he was going to freeze it.
what neck excercises?
selma will i really be able to return to work next month?
i keep reading other peoples post and it sounds like this recovery is a long process.
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620923_tn?1392844218


  Didn't ur NS give u post op neck exercises to do to keep u from developing scar tissue and to help keep the muscles from getting tight?

I have a chart in my profile page, and u have to read the comments below the chart to see which of the exercises u should do....not all on the chart are for those with the PFD surgery......http://www.medhelp.org/user_photos/show/171420?personal_page_id=197028&photo_collection_id=1369

It is a long road, and we are all diff.....I was not able to go back to work, or drive, but I do have other issues in addition to my chiari....

BTW- I also had the oozing....it went on for months....I attributed mine to EDS.....

   "selma"
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no, i have not spoke to him since after the surgery when i was in the hospital, i saw another surgeon in the practice. should i be worried? did u develop all of those problems after surgery?
what is eds?
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620923_tn?1392844218

  EDS is ehlers-danlos syndrome...it is a connective tissue disorder that some with chiari may have...it can affect recovery.....many that do have it bruise easy and r slow to heal...there are many types of EDS....the more common type is hypermobile joints, and flexible skin, that is velvety soft and stretchy....

I was shown which exercises to do b4 I left the hospital, and told to do them several times a day to get my neck moving...it was diff at first, but the more u move it the better u will be.

I do not think u need to worry, but u should move correctly.
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good morning,
how is everyone? i hope you all have a great new year!
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hi selmaS,
SO I find that i constantly have bloody mucuous in my nostrils. this morning i had a little bloody nose.
dont mean to gross u out, but you seem to be the chiari guru! is this normal. i feel like this chiari community forum is more helpful then my doctor!!!!  
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HI, HOW ARE U FEELING? TAKING YOUR ADVICE AND RESTING!
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620923_tn?1392844218

  It is possible that ur sinuses are acting up post op.....mine changed too....I had PND non stop for yrs, then post op it was gone.....now I seem to get it with weather changes....but the sinuses are right up there and can be affected....plus, it can also be from the meds u were on, and right now the dry weather....

Try a humidifier to see if that helps.  
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So I am leaving we now because one of sutures was beginning to get infected. They sent me home with an antibiotic cream and said if it got worse to start antibiotic. I also have swelling in different areas of my head. They did a cats can and said it was ok.
They called my doctor, who told me to come in on monday. What could all the swelling be about. This all really *****
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620923_tn?1392844218

  They should have given u the antibiotic topical sooner to help avoid that...sorry it got to that point....

If u have an infection, it could be an ingrown hair, nething at this point....try to relax, use the antibiotic...drink plenty of H2O......

Post what u find out on Monday.....
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Happy new years to all.
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620923_tn?1392844218

  Happy New Year's to u too Martha !!
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1956614_tn?1325869001
so today has been rough i am on clyndamicin 300 mg 4 times a day for a week. i am still feling pain and pressure on different areas of my head, and my neck really hurts.
i am also getting headches which i wasnt getting since i had the surgery. and my incision was still oozing yellow stuff>
but i am still positive!
looking forward to a better year
anybody know whats the deal with the swelling>
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1306714_tn?1327260680
Glad to hear you are resting.  It's the best medicine.  I guantee you that.  Healing take's longer for some of us and we all experience different issues, but we are dealing with the same issues in the heart.  Want to let you know your in my heart and every thing will work out.  Hope you have a blessed New Year....Just think next year can only get better for us all.
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I agree with Selma they should of given you something before leaving the hospital to prevent infection.  I'm just happy to hear your seeing your dr on Monday.  Let us know what they say.  We are thinking of you.
I have never heard of  yellow stuff, but staying positive will help you heal and also as Selma said.  Lot's of water.  I never was very good at that one.
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hey guys, do you guys know anything about sexual dysfunction or nunbmess after surgery? i apologize if this question is inappropiate. i was looking online for information but havent really found anything.
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  We have a few threads on this topic...and since it affects us, it is not inappropriate.....

If u use the search this community u will find older threads on the topic....but sooooo many of us had this  pre and post  op.....

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Under what title are the threads? Should I talk to my doctor about this, I am a bit freaked out as I am experiencing numbness in my lower extreme ties.
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620923_tn?1392844218

  Just type what ever u consider the topic to be...libido....sex...http://www.medhelp.org/posts/Chiari-Malformation/sex-sorry-selma---ill-keep-it-clean/show/1385141

I found this one......
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1956614_tn?1325869001
Thanks Selma
My issue is more like I have no feeling, and then eventually I do feel something but it's tingling and sensation in my knees and legs
But that's it, it's like I am numb
Should I tell my doctor tomorrow?
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620923_tn?1392844218

I know what u mean...and that is an issue with many of us as well as libido....

Deff let ur Dr know...hasn't he asked u about this yet?.....this is one topic my Dr  did ask about. when there with my DH, so he understood what I was trying to tell him all along.....
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So, went to appointment today
Staples were removed from main incision, however the second incision is not healing very well according to dr. Therefore he wants to keep a close eye on it and then he will decide what to do. I have to return on Wednesday he says it's all superficial muscle so it should heal on its own, but if it doesn't they will handle it. He also told me to go ahead and wash my hair. I am totally freaked out by this!
We also discussed all of my other symptoms, he said he wants to do another MRI, he wants me to keep a close eye on my symptoms and if they get worse he wants me to go to er, and he will order all of the exams. He says he believes what maybe happened is that during surgery on some blood possible went down my spinal cord. Hmm? What does this mean?
But he told me not to worry and to call his office at anytime if the symptoms worsen?
My symptoms are constant need to urinate at night, and the sore,stiff neck. As well as numbness and full bladder.
Hmm what could be happening?
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  Did they make sure u didn't have tethered cord?

It is good they r keeping a close eye on u...so that is promising......
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so these were the results of my mri of lumbar,cervical spine,brain, without contrast. these were done before surgery.
cerebellar tonsils protrude through foreman magnum by 8mm ith crowding seen at cervico medullary junction.mild degnerative change in lumbar spine with mild facet hypertrophy in the mid and lower spine. small central disc herniation at L4-L5, with mild narrowing of the spinal canal. no evidence of tethered cord.small disc herniation at c5-c6.
translation??????
so could i get a tethered cord after surgery>>]]
i am so scared of washing my hair, knowing that one of incisions hasnt healed yet? after i wash it, what should i look out for that could be a sign the incison has gotten worse?
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620923_tn?1392844218

  Not all tethered cord is seen on MRI....and yes, u can get TC as a result of surgery, but not this one...u can also acquire it from an injury.....

  What u want to know regarding TC is the length of ur brain stem, and where ur conus ends.....those with TC tend to have enlogated brain stems from all the pulling.....and the conus ends further down then the typical tail bone.....

Ask someone else to wash ur hair for u...I stood at the kitchen sick and bent forward and that way they could be careful of the incision...I was not up to the water from the shower hitting my head....

Look for oozing....and ne bleeding, ......or swelling.
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ok, thank you so much selma.. so you think my mri is ok?
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  There is no way really for me to know....not being a Dr....but a NS that is well informed with Chiari would know other ways to see if TC was indicated even tho it did not show on a MRI...many times it is called Occulta tethered cord...occulta meaning hidden....
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I had excruciating pain after my surgery, although mine started a few days before I got out. It was in my lower back at first and then went down to my leg along with it.  The only thing I could get from the ER was that I had osteoarthritis mild. Then he said it had to be sciatica. Now, mind you, at our hospital here, they are not very good at all! They have let people die while waiting in the waiting room, thinking they were not emergencies, so who knows. He said you can have sciatica and it just be in the lower back or it can spread to the leg. Again, who knows. He was just probably taking a wild guess.  I still get the pain and I had never had this pain before my surgery. It is weird.  Selma is right, about the TC. However, my sister did research for me, out of curiousity and she said that sometimes tethered cord is not seen on a MRI...it can be missed.  So I still wonder if that is what I have.

Also, the current neuro said there are a few other issues going on with me that can be taken care of later, that first thing is first...neck/back. One of them being scoliosis possibly.  

The head feeling, I got and still get...feels like numb on the outside and inside and I get pain that is not on the outside but feels completely on the inside but some place I can't even get too. Hard to explain, but like there was something else under my scalp. Idk what to make of it, of course now I think I do, mine was due to the surgeon only doing half of the surgery and then stopping in the middle and sewing me up.

Good luck and I hope that you get some relief and answers from the doctor soon.
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Omg it sounds like you had a horrible experience I am so sorry. How are u feeling now.
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so last night i washed my hair!!!!!!!i sat in the tub and slowly washed all the gunk out. when i went to get up and get dressed, i felt weird. again i felt like i had to pee, but i was numb, in my lower abdomen, and private area. so i managed to pee, but it was like i could slight feel what was going on.
so i freaked out and cried. while sitting in my coach i still had the feeling,
it was like i was in the hospital with a urinary catheter, were u have the sensation of peeing, but you cant control a thing,or you can push your pee out but cant feel it.
i am better today. but i am really starting to get depressed and worried. i read this could be a complication of surgery.
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i am also feeling kind of nausea today, am guessing its do to the clyndamycin
how is everyone else doing?
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hi selma, i called my doctor today, because i continue to feel like i need to urinate, and i cant sleep because of it. i also explained to him what happened last night. he said, i had two options:
start this medication called medrol today, and then tomorrow when i see him, we would take it from there. or come to the er today were he would have to admit me, to run some test, mri's and place a catheter to measure the urine in my bladder. so i freaked out, and said can we try the medication first??? he said yes.
so now i think i made the wrong decision. and should have just went the hospital. should i call him back and just go to the hospital, or should i wait until tommorrow?
please help???
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620923_tn?1392844218

  Hi...I am  so sorry this is going on and that I was not on earlier......

U should get the testing done, the sooner the better...the urodynamics testing is just that a cath inserted to measure how much is in, how much comes out and the strength of the bladder muscles.....

  If u feel u may have TC this is a test that will have to be done at some point.....

  Call him back and go for it....find out what is going on so u can feel better....

I would also suggest u stand at the kitchen sink to wash ur hair, leaning back in the tub like that is not good  too earlier in recovery....
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1956614_tn?1325869001
Hi Selma, I have to see him tomorrow. So I guess we will see then. I am actually feeling better. Although I have been getting some headaches. I decided to not take the medrol as I get  nightmares, and can't sleep when taking steroids. I am wondering though,maybe I should give my body a little more time. I really don't want to go back to the hospital,they are probably going to drug me up with stoids anyways. I am really worried about all of ths. I am going to see how tonight goes. The sensation that I have a full bladder and need to pee, really kicks in when I am laying down. But I had this problem prior to surgery. It just has gotten worse these past few days. It's really bad.
I also realized that when I get in the car and we are driving around I start to feel pain and pressure in the back of my head, and headache.
I just don't want to rush to have all these test and be in the hospital again, if I don't need to.
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620923_tn?1392844218

  I understand ur not wanting to be in the hospital again so soon, but be careful u do not get a bladder infection or nething like that...drink plenty of water and it could be u need to be dilated....who knows...but do let them check u out and get it figured out soon, as ne infection in ur body now will affect ur recovery.
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Ok, I will. Ur right I just hate being on medication, and I am afraid they will find something, or what if they don't then it will look like I was exaggerating. But I will tell him tomorrow to just do the exams. Thank you for always responding Selma. I really appreciate so much.
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620923_tn?1392844218

  No worries....just take care so u get better soon : )

I had many UTI's and know how they can affect how u feel over all....and it is not good with trying to recover.....so best check nothing else is the issue at this point,

Keep us posted : )
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1956614_tn?1325869001
Good morning,
How is everybody?
So last night I slept ok, this morning had to get up, can't sleep because my bladder wont let me! So definitely going to ask for those test today. Are there any specific test I should ask for. Feeling pretty depressed as I just want to be back to normal. I feel like an absentee wife, and mother, eventually my family will get sick of having to do everything.
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1925822_tn?1333709217
Ok...one thing is for sure u wlll get better and the pain will go away,but u have to give ur body the time to heal.i am 2,5months post op and it does get better...but slepping is best medicine anyway.dont give up...and dont lose motivation.i know it is hard.big hug
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Thank you, that makes me feel better.
:)
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So I started with some diarrhea, hoping this will go away, I know this could be a sign of infection or just the antibiotic. Either way it ***** on my way to see doc.
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So I'm being admitted dr says he dosent think anything is really wrong, other then my body and nerves recovering but he wants to make sure
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620923_tn?1392844218

  I am sorry I know u did not want 2 b in the hospital...but  it is best to get this cleared up what ever it is.

Please keep us posted.

Sending <3 ((hugs)) and prayers
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home from the hospital! i selma,how are u??? i was discharged this evening and am now home, i am happy i listened to you. thank you;}
doctor said mri was good,these were the results, c5-c6 disc osteophyte without significant spinal stenosis.
dorsal soft tissue fluid collection is noted. pseudomeningocele cannot be excluded.
hmmmmm, what is that?
doc said he wants me to come to office everyweek. bladder test should, a nerve was causing me to feel need to urinate so they gave me medication for that.
can you help with mri translation?
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620923_tn?1392844218

  Disk osteophyte is bone spurs.....but it is not making  spinal stenosis an issue...stinosis means it is a narrowing....

Dorsal soft tissue fluid collection = pseudomeninogocele is possible; this is a sack of CSF that collects..we have several members with this issue...surgery is often done to help correct the issue.

  Glad ur bladder issue was able to be corrected with meds.....

  Hope this helps : )
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what??? will i need surgery for this dorsal soft tissue fluid collection, if pseudomeninogocele was possible, why didnt they check, further to confirm? i am confused selma
what should i do?
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I DID NOT HAVE THIS BEFORE SURGERY! I AM SO WORRIED NOW
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  Well depending on the size of it, mayb they feel the meds they gave u may help, when do u go back to the Dr?

Some Drs do not treat these right away....relax...and see what ur Dr has planned.

Do read older threads on this topic here on MedHelp for more insight.
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It is a post op issue...so no u would not have had it b4 surgery.....some do get these.....but u have to calm down.....stress will only make u feel worse.

When do u see ur Dr again?
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monday, he said he wants to see me frequently. he didnt tell me this, stuff he said mri was good. i only know cause i asked for a copy of the films before leaving the hospital. i guess he didnt want me to freak out. what sould i look out for are their signs of this is getting worse
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  Well it says it could not be excluded, but was not yet dx'd...so, as I said it is  possible...not definitive....

  I suggest u talk to our other members that have had one as they can give u first hand info....zygy is one that comes right to mind......as I said use the search this community using psuedo as a topic and u should be able to find the threads and the info.
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hi selma, how are u?
i can't find any threads, on this. who is zygy?
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Hello I am under zygy2, lost my first log in information and had to start over :)  Feel free to message me if you want :)  I just added my pseudo story to the link Selma started :)  -zygy
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Hi, its nice to meet you! selma has been really wonderful, answering questions and offering support. finding this forum has truly been wonderful, its nice to know their are people who can relate.
I wanted to learn more about (Dorsal soft tissue fluid collection and pseudomeninogocele. )Like I told selma, my last mri stated (dorsal soft tissue fluid collection is noted, an pseudomeninogocele cannot be excluded). so i am kind of upset about this, however my doctor did not tell me this. i found out because i asked for a copy of my films.
he told me my mri was good. will this cause problems, and if so what symptons should i look out for?
when did you develop this? when did you learn you had chiari?
thanks, look forward to chatting with you
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1667208_tn?1333111449
:) Hello again :) If I were you and I was this stressed and confused I would call the office of the NS and ask for someone to tell you about the fluid and what the plans are to deal with it!  If you can stay relaxed and your major symptoms are doing better from the meds they gave you than you can wait until your next appointment.  Unless your pseudo is LARGE and causing a big lump on your head and symptoms than you probably need not worry right now :)  I can't feel mine, it just sits in the muscle where you can't even tell it is there.  I can feel it only because I know things are not quite right,  it causes some positional headaches and sometimes I feel pressure but I am assuming this is my over production of CSF and not actually my pseudo.  My first one I had nearly a year before I had surgery, it was!  I could not convince them to do an MRI... Chiari tends to get you a "crazy" stamp on your head and once that is there it can be so hard to escape!  I tried to tell them that I know something is weird..... I was SO VALIDATED when I finally got my MRI 9 months post op and they found it :)  Not happy to have it but happy to have an answer.  Now my pseudo that I have currently I have had for five months so once again, it may be causing some headaches and stuff but other than annoying it is not a must solve right now kind of problem.  Pseudo does not always mean surgery and it is so early for you that I would think they might try a blood patch or just watch it for a bit to see if it goes away!!  -zygy
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i am sorry you had to go through a bad experience with the nr. but it sounds like you finally found someone who really listened. i really hope you get better. i can understand the need to feel the validation, since everyone probaly thought you were just "crazy, or exagerrating."
i dont think its bothering me, i dont know. i discussed with the dr, the fact that i feel like my head swells up in differnet areas,and how lumpy the back of my head feels. he said this was normal and would go away. my neck is still hurting like crazy. sometimes it gets so stiff, and it feels like its attached to my shoulders,i also expained, that i now get pain when i chew, but its mostly on the left sideof my neck, and jaw.
i hope you wont have to have surgery again, it sounds like pseudo surgery, really dosent solve anything. do you feel like you would do the surgery if you had the chance to go back.
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Hey guys how are u?
I was wondering how long those pain and head swelling last after surgery.
Last night while laying on my back, I literally felt like I was laying my head on a golf ball. It was like their was a golf ball between my head and my pillow.
This evening I also had swelling and pain.
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  I am further along post op and still do not like to lie flat on the back of my head...I would suggest u lie on the side of ur head instead....
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Ok thanks Selma.
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1306714_tn?1327260680
I have a U pillow.  If you like to lay on your back on suggest yu get one.  I accidentally came across one at Walmart and it only cost 10.00 and I use it all the time.  Even when I sit in a chair.  It help's support your neck, but when laying down.  I like to lay on my back also and the back of your head fit's right in the hole of the U so you can lay more comfortably.  I am 16 post op, but I have alway's layed on my back.  Have you been dx'd with a CSF leak?  Is your back of your head swollen?  I had this and mine was a CSF leak.  If so you might want to avoid laying on your back for now, but the U pillow as I said does help even when sitting in a chiar.  Hope this suggestion help's you.
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1956614_tn?1325869001
Hey guys going to see the neuro tomorrow.
I am still having the swelling take place. It occurs in different parts of my head. Sometimes on the side but always on the back of the head. It feels like pressure, and when I touch it it feels like a lump, so areas feel hard and some feel soft.
Is this normal?
I will try to get the pillow linnielou, thanks.
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620923_tn?1392844218

  Not sure what could be going on...I am sure ur NS will be better able to give u answers since he will be looking at the area.....

Outside of ICP or something like that, it just may be the healing process ......do post an update once u talk to the Dr.

    Good luck
      "selma"
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1956614_tn?1325869001
thank you selma!
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1956614_tn?1325869001
hey guys!
saw nr yest he said that i would feel better in six weeks, told me that chiari, those cause neuro damage, this is way i am having the cognituve issues, and aphasia.he said he was going to send me for physical therapy, but not now.
i felt like he was really not telling me anything different. visting the dr. is beginning to feel like, i hear the same thing everytime.
i like the nr i think hes great, but i get the sense that he feels like this is just a lets wait and see illness.
so 6 weeks and i will feel a lot better hmm,
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620923_tn?1392844218

  Hi...this recovery takes a lot of patience on the part of the patient.....u need to proceed slowly as u heal slowly...even tho u may feel much better then b4, u can cause set backs if u try certain things too soon and y ur Dr is waiting on the PT,....the swelling inside and healing inside can take much longer in fact up to 2 yrs to heal completely...and u will continue to see changes and benefits during that time.....

I am not sure y he gave the time frame of 6 weeks unless that is a typical time frame for his patients to feel better.....

  Sit back, relax and allow urself to heal : )
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1956614_tn?1325869001
thank you selma
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1956614_tn?1325869001
Hey, I was admitted last night after I developed another lump on my upper back.catscan should csf leaf. My. Euo says its not that bad, and he thinks it's gonna go away on its on. M husband andi think the top lump looks bigger. I am frustrated at how calm the Neuro surgeon is. He said he seen bigger, csf lumps.
Ok. So what are thy gonna wait till it gets there. There keeping me for 24-48 hours for observation. Ang giving me volume and meds for pain and head swelling.
I hate that my Neuro surgeon is acting like this is no biggy.
Are their any questions I should ask or test. I'm so frustrated.
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1956614_tn?1325869001
Hey, I was admitted last night after I developed another lump on my upper back.catscan should csf leaf. My. Euo says its not that bad, and he thinks it's gonna go away on its on. M husband andi think the top lump looks bigger. I am frustrated at how calm the Neuro surgeon is. He said he seen bigger, csf lumps.
Ok. So what are thy gonna wait till it gets there. There keeping me for 24-48 hours for observation. Ang giving me volume and meds for pain and head swelling.
I hate that my Neuro surgeon is acting like this is no biggy. Should I ask for any other test, or are there any questions I should ask.
So frustrated
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620923_tn?1392844218

  Well u r in the right place, but NS's change their tunes when a patient has a leak, they feel they failed and how could that be...not all leaks r due to failure of the NS...many times it is a rejection issue....so many tend to have EDS and this is an issue that can occur if u r not aware b4 surgery and the patch is one made of something other then their own skin......

  It is possible that ur leak will resolve on it's own...do drink plenty of water  and stay as flat as possible.

  Good luck and keep us posted when u can

           "selma"
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1956614_tn?1325869001
hey selma,
so im home!
while at the hosp i had my pcp call ns, so i could get some clarity as to what was happening. ns finally said that there was nothing to really do but manage the symptons.and he was condifent the leak, would resolve itself. however if this didnt happen there were some things they would try, before moving to surgery. so for now its wait and see. if i feel worse, or either lump gets bigger i have to go to er.
my nurses were great and explained that these leaks, or "fluid collection" as my ns called it occur when they dont close the area tight enough during surgery or its my bodies response to the patch. baissically what you said.
i guess ns didnt want to admit what was really happening.
i am jsut hoping this resolves it self.
i feel ok, but when i am sitting up or doing anythng but laying down, i feel uncomftorable. i feel the lump on my back and neck,it feels like my neck is connected to my back. i am still getting swelling my scalp, which started again on sunday, it was pretty bad. i had nausea, headache. this *****.
the nurse told me there was nothing that could really done to prevent this from worsening, she said it was just a wait and see. but for now try to rest, and activites as tolerated.
they put me on steroids for the inflamation (inflammation), and nausea, they also gave me volume for the muscle spams and morphine for pain.
im praying this will go away,
i find that when im up, the lumps swell up or get bigger, but if am laying they tend to get smaller.
selma is there anything i can do to get better?
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620923_tn?1392844218

  Hi...I was told with a leak, or possibility of a leak to lay flat..drink plenty of water to keep hydrated....

In fact, after my leak I was given an elasticized  belt that spanned from under my chest to my hips and I was to tighten it as much as I could...this was after the leak sealed itself....hmmmm...neway

Stay flat....not sure y u were not given these instructions. But it is what I was told, I was in the hospital and I was made to eat lying down...only got up to go to the bathroom.....my symptoms were much worse then urs,m so I am sure if u limit what u do and lay flat it may help u as well.


  Rest and let me know how u r doing

       "selma"
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1956614_tn?1325869001
Thank. You Selma yeah while at hosp I was on bedrest
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620923_tn?1392844218

  I would continue it while at home.....mine took 5 days to resolve.....and I was told if it wasn't by the 5th day they were going to do a blood patch, I woke that Am and was better, but, was sent home with that corset/belt and no lifting...
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1956614_tn?1325869001
Well the first bump appeared on Friday, and the second Sunday. But according to doc, it's the same fluid collection I had jan 5 it just grew bigger.
I have to see him Monday. How long do u think they usually wait beer oing something about fluid?
Thank you Selma you always give the most honest answers. I appreciate that.
By the way how are you feeling? I apologize I feel like whenever I write it's o ask a question.  So how are you doing. I noticed on your page you a little girl. How old is she? I have three children, 7,6,4.
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620923_tn?1392844218

  It seems it all depends on the Dr as to what they do and the timetable they follow...as I said when I had a leak I was told 5 days and if it was not resolved on it own, they would do a blood patch...mine resolved...so no patch was needed.

  I am doing ok, thanks for asking : )

I have one DD and she is 27 yrs old and married lives in NYC....and teaches dance.

  Thanks again for asking and do keep me posted on ur leak and how u r doing.
    
     "selma"
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1956614_tn?1325869001
wow, how old are you? i thought you were a lot younger.
thats really really cool.
i am 29!
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620923_tn?1392844218

I was 49 when I had my surgery...in '09....lol...thanks for thinking I was younger....but unfortunately I am not....u r closer to my DD's age.

There are pics of my DD's wedding on my profile page.

    "selma"
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1306714_tn?1327260680
I don't want to scare you but I had a CSF leak that wouldn't heal so they had to go back in and find the leask 2 surgeries for this in all.  Before my 3rd surgery they had put in a lumbar drain and I layed there for 14 day's to see if it would stop.  Just after they stopped the drain my head filled up again.  So unfortunally they had to go in and repair.  As Selma said and my dr. told me this is highly unlikely for most patience.  He said he never seen this in the 30 yrs of doing this surgery, but my body was rejecting the stitches that were in the inside of the head.  Please lay and rest as much as possible.  This will help keeping the pressure in your head low.  I was told by my dr. to lay on a 25 percent incline so the fluid has a chance to flow down from the head.  All NS do thing's differently.  The best thing is to rest and try not to worry because it could make it worse.  My heart goes out to you because I know you don't want any set backs.  Just as I memntioned and Selma lot's of fluid and rest.  Keep us updated your in my prayerj's.  Erevything will work out for the best.  Just take care of yourself.
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1306714_tn?1327260680
Also wanted you to suggest to NS to get your sodium level's checked.  I had this problem also and if you are taking out more fluid's than what you are taking in this could be the cause.  Take care.
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1956614_tn?1325869001
hi, thanks for the advice. i am worried, but have managed to just relax. i realized their is nothing i can do, but hope that god, will resolve the issue.
i saw my pcp yesturday, and he explained that its really a wait and see situation, as neuros hate to go back to surgery. he said, they probaly want to give it time, and then will probally try a blood patch, and surgery will be last resort.
for now ive just been resting. i find that i am ok when laying down. but i dont feel great overall, my neck feels full and i still have the bump that started on sunday. the first lump which is behind my incision appears just spread on the neck, but not as big, this one started on friday.

my ct stated that "a fluid collection in dirsal soft tissue at the surgical bed has increased in size since prior study, "currently 5.7 (craniocaudal) X 3.6 (AP) X 2.5 CM TRANSERVE. It also says theur is a thin rind of enhancement that is not suggestive of infection. Pseudomeningocele again canot be excluded.

my shoulders hurt somewhat when am laying down, as well as the upper portion of my back.
im still having the ocassional swelling on the back and sides of my scalp, it literally feels it shifts.
ill see doc, on monday, and im gonna ask what the plan is?
in the meantime, and just try to keep it easy! taking the dexamethasone, and volume when needed.
thank you so much for caring.
this forum is a true blessing!!!!!
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