I had decompression surgery five years ago for cm

[ladybug327]

I live in severe pain everyday for the last year. Thankfully I found a wonderful pain specialist he is the reason I am not in the bed everyday. I ache all over like I have the flu. Can anyone tell me if they hurt like this that has chiari malformation and pseudotumor cerebri. I live near Durham Nc and I need to find a neurosurgeon but so far no luck. I would appreciate any information you can give me. Thanks

[selmaS]

No worries...let us know what you find out.

[ladybug327]

I don't know what he used. I know it wasn't tissue from me. That never occurred to me the difference that would make. Thank you for knowledge that you have about this. I will check into this more.

[selmaS]

  Ok so in 6 months time you felt the issues and went to a Diff Dr and was told PTC....

Did you have a dura plasty and if so what type of patch was it?

I ask this bcuz it seems those that reject a patch made by anything other  then the patients own tissue can  create excess CSF to be produced and DX'd as PTC or IIH,....however it could be the patch.

Just something to consider.

[ladybug327]

My surgery was done by a well known chiari specialist. I started having problems again about six months later. I then saw a group of neurosurgeons at University of chapel hill. I was really sick at the time .They done mri's , Ct scans. They found I had another herniation, then they found I had ptc. I had so many Lp .After about a year they said there was nothing else they could do. Actually they really didn't seem to know that much about it. I've seen several since then but when you mention the Chiari and ptc they all would recommend someone else. I just don't know what to do next. Thank you all for your support.

[ladybug327]

My surgery was done by a well known chiari specialist. I started having problems again about six months later. I then saw a group of neurosurgeons at University of chapel hill. I was really sick at the time .They done mri's , Ct scans. They found I had another herniation, then they found I had ptc. I had

[selmaS]

  Hi and welcome to the Chiari forum.

I read your profile and you stated you had a failed PFD surgery, did a Dr tell you the surgery failed or do you feel that it failed since you are still in pain?

A failed surgery is when the surgeon takes too much or too little bone or does not open the dura plasty and a redo of the surgery with opening the dura plasty is involved since there is still a CSF obstruction....if surgery was done and CSF flow restored surgery was a success...having pain after is something different....it could be related conditions...

PTC can cause pain...and you will need to be treated for that ....

Ehlers -Danlos can cause all over pain and can also cause headaches and a number of different symptoms similar to Chiari symptoms so it is good to know if you have a related condition to know if surgery failed or if it is the other condition causing  you to feel poorly.

Was your NS a Chiari specialist?

When was your last MRI, CINE MRI....?

My surgery was 5 yrs ago and I do have days with pain, but I also have EDS, tethered cord and a few other medical issues going on....so I know my surgery was a success, in that my major Chiari symptoms are gone....I also know it took time for my symptoms to fade....since your surgery was 5 yrs ago, you will have to look at when you began to feel badly post op....

There are Drs in NC, and MD that may be able to help...take a look at our List of Chiari Drs.....

[frankie_rush]

I have little aches and headaches.  I had mine two years ago.  I usually take an Advil if gets to unbearable.  I had a syrinx also.