doc help...n chiari 1 or 2

[amit_semwal]

I had a decompression surgery in 0ct 08 but have some residual symptoms so considering a second surgery but can't find a sure shot ans to if I should go for a surgery and which procedure is to be followed. I have sought opinion from most of surgeons of Delhi but all seem to have contrasting replies. so can Any one of you refer me to a specialist who can give me appropriate and fair answer to my question. .

P.S. It would be tough for me to fly down half the globe just for an opinion but incase that is the last option might even do it.

I have one more doubt watching a video at TCI I was confused if I have chiari I or II. Is there any way to find out. Only my discharge summary mentions that I have chiari II rest all just mention "ACM".

Thanks
Amit

[shanmomof3]

Amit, i'm SO sorry your having to go through this again and that the first surgery/dr did not do what was necessary. The drs are right though with that large of a herniation you have a much bigger risk of nerve damage. I'm sure dr Oro or TCI can help you! Please keep us posted on what they say. Blessings ~ Shannon

[amit_semwal]

They names my surgery as Posterior fossa decompression with partial laminectomy

My syrinx was in C2-c4 and tonsils were 17-19mm

Reports also marked bassilar invagination....n disc bulges

There were a little circus during surgery.. Present reports show the same

My bro talked to Dr. Oro and people at TCI..we have procuredI CD of my latest scans and mailed them..Waiting for their response.

I dont feel my symptoms are that alarming..i am able to do my work almost independently with ..efforts but of all the docs we consulted some fear that it might worsen over time..And its better to prevent it as nerve damage can't be recovered

thats it as of now

Thanks to all those who are supporting me and other chiarians..kudos to u guys
I

[*Stormy*]

That does sound like they are seeing some type of blockage then. That's too bad if they didn't do enough the first time...I have heard of this happening to others. When I found out I was getting all 3: duraplasty, laminectomy and decompression..I was a little shocked but then after reading about others that have to go back and get it done after the fact I figured it was better to get it all done at once. I am really sorry if that is the case for you.
As many members state..if you can get a NS that specialises in Chiari...that can really make a difference. I am glad to hear that you are in discussions with one now.

As for residual symptoms...if they are still greatly affecting your life and there is a way to fix it then you are probably best off getting the 2nd surgery done.

Good luck with Dr. Oro..I hope that he can come through with a solution for you. Keep us posted!
Carolyn

[amit_semwal]

Thanks a lot for the advice and it really helped. M currently in process of talking to TCI and Dr Oro regarding the same

After decompression we werent told that it was unfair for us to expect any kind of improvement. N had blind faith on our neurosurgeon.

But after 1.2 year of surgery there was some improvement but some symptoms were still serious...n so we have been contacting all the neuros for second opinion.

Most of them hinted that enough wasn't done in first surgery but they leave the decision of second surgery on me. And their opinions also vary regarding the surgical procedure to be followed which is confusing for me.

As for the residual symptoms...I cant climb down stairs...have sleep apnea...prob in swallowing,,,vertigo

Until now I didn't research much on my prob so didn't even know what symptoms M I facing and to what extent

As for my latest scans..they mention that most of my symptoms are "persistent"


Lets see

[selmaS]

Hi..Caroly has covered much of what I could possibly  offer, but in addition to  TCI, Dr Oro and many other chiari specialists will review ur MRI's for a fee.

Since u r not in the states this may be a option for u.

As for chiari I or II waiting for an opinion from which ever specialist u send ur films to for review......I am so sorry u r having to go thru this process all over again since u obviously have been thru this once already. I pray u find the right dr for u and the treatment to help u feel better.

"selma"

[*Stormy*]

Hello Amit

Unfortunately...all I could recommend is to try and get to one of the Chiari Institutes in the states which undoubtebly will give you the most accurate opinions. However, I understand how hard that is, I am from Canada and there are no actual Chiari specialists here either and I can't afford to go to the states due to travel costs and health insurance. When I looked up the TCI it looked like you could email your MRI pics in and they would review them for a fee and you would only have to travel if it was their opinion that they could help you.

Just wondering...what type of residual symptoms are you having? As most of us know, the surgery is not a cure so many of us are left with symptoms afterwards. This could just be from nerve damage and is not fixable by another surgery. I have almost 4 months still b4 I get my follow up MRI so I won't know till then if any of mine are still caused by blockage. Have you had any follow up testing to see if you still have a blockage? If you do, then I would say you probably do need another surgery...

As for what type you have...I agree that's confusing!! I know it follows the degree of the herniation..off the top of my head I believe that some of your brainstem has to be herniating into the forum magnum to have Chiari II, not just the cerebellum. Usually if they just refer to ACM is it usually just Chiari I but it looks like they mention both... If you have II I could see why you could have further problems..I'm sorry I couldn't help more, I really hope you get the answers you are seeking!
Carolyn