chiari decomp failed

[nesha44_359]

I suffered in a small town Tulsa, Ok for over 10 yrs of hospitalizations every 3 months like clock work! I presented with nausea vomitting and memory loss lapses, pain in every joint , and severe headache and neck pain.  I moved to Houston and was diagnosed with Chiari right away after my first MRI of my brain.  They immediately talked me into doing the decompression and disk removal; once i was scheduled for the procedure, the dr slid in that he was convinced i had an underlying condition like EDS! Now its been 6 months after my surgery and I feel like I'm 10% better than I was and I've been blessed with wrist drops both L and R hand every 2 months ,  neurologically fine motor skills aren't good and now eye problems.  The Dr.s are students and I know more at this time than they do about CM.  I had to move back to Tulsa and the Dr.s act like its my stress bothering me! Pleaase sum 1 tell me I'm not alone.  Is anyone going thru the same hell?

[selmaS]

Hi and welcome to the chiari forum.

First, unless u get a dx of brain slump, u do not know that ur surgery failed...u mail be dealing with EDS issues like the dr said,Have u followed up on that?I know that u do not have the results u wanted, but there r so many things that can happen, including dealing with related conditions u may not have been aware of b4...or is new post op.

Failure of PFD is if the surgery did not restore the CSF flow...which is the primary reason for surgery....restore the flow to help lessen the possibility of a syrinx forming and lessen the severity of symptoms....but it is  not a cure or a fix.

Do u know if the drs used a  dura patch ...if so depending if it was nething but ur own skin u could have rejection issues with EDS.....

In recent MRI's what is the result?.....have u had a full spine MRI to rule out tethered cord, a syrinx, ....have they ruled out cerebral ptosis?....

Having the right dr is key, like Carolyn mentioned, and will be to get this figured out as well....but, all I want to point out is, ur PFD may not have failed, but u may have other issues as a result....which is not uncommon to happen.

Hang in there,
"selma"

[*Stormy*]

Hello and Welcome

In answer to your question...yes, many of us are going through the same thing to one extent or another. It sounds like you NS was not a Chiari specialist? That would be my recommendation, see if there is one in your area and see if you can get him to take a look at your scans.

When I was told that I should have surgery, my NS made it very clear that the surgery was not a cure and that the only thing he could guarantee is that it would stop the progression. There was no way to know for sure if I would even get better. At that point I had only more to lose by waiting so I went ahead and did it. I am now almost a year post op and I have seen improvements but I still feel like I am fighting the battle. One thing we have in common is that it took a long time to get dx'd and our symptoms were allowed to progress. I think this makes a big difference on how much recovery is made after the surgery, sometimes the nerve damage can't be completely repaired.

At about your stage I went back to my NS feeling upset b/c I hadn't seen the changes I had hoped for and on top of that, I was dealing with chronic body pain (more than b4). He reminded me of what he told me pre-op that they couldn't guarantee improvement and also he said that it could take up to two years to see the full benefits. At about 8 months I did notice some more small improvements which gave me a little hope.

I know that it is a raw deal to go through brain surgery and then still be battling with a lot of the same symptoms. But if you have another consult with a NS and they assure you that everything is how it should be then I would encourage you to seek some type of rehabilitation. I am in the process of that now and even if it doesn't end up helping me, it is a blessing to have such caring people around me who really want to help.

I'm sorry to hear that this has been such a trial for you...10 years!! That is a long time!

You have found the right place though...I'm sure there are many of us here that will share our stories and you won't feel alone.

Hang in there..
Carolyn

[pamk5]

I am sorry that you are going thru so much.  We all go thru the Chiari run around.  We are told that tiny little herniation, you had it your whole life it couldnt be causing your symptoms.  The best advice is look here on the forum for a true Chiari specialist and go see him.  Be advised you may have to travel.  I travel 2 hours to see mine but it makes all  the difference in the world to find a doctor who understands this condition.  I havent had surgery yet, more than likely will be in January.  Others who have had it will chime in shortly and let you know their experiences.  Good luck to you and here you will have all the support and info that you need.