Am I the only patient that feels this bad after decompression?

[Sizzle678]

I had the decompression on June 1st of 2009...post op was terrible, 3 rounds of steroids for inflammatory menangitis, then they tapped my spine 10 times (yes I said 10 times) OUCH....to come to the conclusion that my spinal pressure is twice as high as it should be. Now I can barely work, and being a mother of a 3 yr old is hard without being sick so I have tripple the task, and then I'm a wife who is too sick to do anything but sit on the couch.

I'm seeing flashes of light again, I have pain in my neck always. My extremeties are always numb from the Acetazolamide that as per usual won't work on me for some reason (it's supposed to lower spinal pressure but of course it's not helping me like it should) but the dr's won't take me off of it because they tell me it's protecting my vision??

Has this happened to anyone else? I'm a DUKE UNIVERSITY PATIENT!!!! Don't get me wrong, duke is awesome, but I feel like a guinea pig that isn't interesting anymore so I got put in the rat race to just run myself to death.

[redkim]

I am almost a year post op and I can't say I had any issues close to what you had.  So sorry this happened to you.  The only problems I had was with the med's making me sick (I lost 10lbs in two weeks from vomiting).  I have to say that now I feel better.  I don't have any underlying conditions and my symptoms weren't as bad as others when I had the surgery.  I wish I had some advice, I will be thinking of you and hope you feel better.

[sandrawoodford]

Hi I was put on Acetazolamide after my operations and it actually made me feel a lot worse! when people would speak to me it was muffled and every word they uttered made me feel like someone had hit me in the head, like a sudden shot of dizziness and pain at the same time.

I don't like this drug!!

Sandra X

[selmaS]

HI and welcome to the Chiari forum.

I am sorry to hear u had such a bad experience with ur PFD. It is not uncommon for patients to have this happen after this surgery...there have been a few and I was told it could happen. One member here had to be shunted after PFD.No one really knows why the body over produces CSF, but basically that is what seems to be ur issue...if ur body can't absorb the excess it creates pressure and u have all the same pains u had prior to surgery.

I am not aware of the reputation Duke has for chiari , so I can not say nething there......but if u feel left down u may want to look into another chairi specialist.Depending on where u live may depend on who u may want to look at.
But research all drs do not just assume bcuz they r on a list that they r right for u.The list we have on this site is a list of drs that the members here have gone to and liked.

I had my surgery in May and am having some issues as well, but I have other chairi related conditions too.

Were u checked for  syringomyelia, tethered cord, EDS ? It could be Y in addition to the meningitis u had for the way u feel.

I am gald to welcome u to our little family, sorry for the reason u had to seek us out.

"selma"

[ChiariWolf]

:-\ Very GOOD question! My surgery was Sept 15th, 2009. The first month and half or so was really different in a good way. Then it started turning colder and with it the symptoms or should say 'some' of the symptoms, not as bad as it sounds like yours have gotten.

I do hope you get to feeling better.

Wolf

[rod44]

Hi and welcome to our community,  this is a good place to get advice and support....

I have not had any surgery so I cant help much. I see from your profile you have Chari type 2, have you any other Chari related Issues?
Our CL here is selmaS and she has good experience and knowledge and will advise you better than I can
Wishing you good health in the future, keep us updated on how you get on....

Ray.