Does surgery really help?

[mjsummers34]

I know everyone is different. But was just wondering how many people really saw improvement after decompression?
I put off surgery for a while because the idea of it freaked me out! And I read mostly horror stories about surgery making things worse. But things have been getting progressivly worse. Increased weakness, pain, bowel and bladder incontenence, numbness etc. So I am now scheduled for surgery March 13 and am still a bit freaked out.

[selmaS]

  Surgery did hep me, but I did not have either of those issues....but we have had a few members with them....I am sure they will post, if not ask zygy2 and I am sure she can offer whom else may have insights on these 2 issues.

[mjsummers34]

No he didnt mention hydrocephalus. Just said he wanted to investigate the area since it showed arrested flow there. Along with reduced flow elsewhere.

Did surgery improve anyones tarlov cysts or meningoceles? I have 4 tarlov cysts and 2 meningoceles.

[ZilZil]

My surgery was successful in the sense that my symptoms were intolerable and improved dramatically after surgery.  But, I won't lie, there have been other issues that have presented themselves since the surgery.  Whether that would have happened on its own, I can't say.  My guess is that they would have and I'm still investigating what to do about them at this time.

It seems to me that most people with Chiari experience a gradual worsening of symptoms over a long period of time.  Mine was traumatic and short lived, necessitating immediate action (read my profile for the whole story).  So it's harder for me to gauge when I would have actually taken action.  I always had symptoms, I just didn't realize what it was or that it had a name.  I had visual disturbances before I asked my family doctor, and to his credit, he ordered an MRI immediately.  The total time from diagnosis to surgery was two months.

I was really reluctant to consider surgery and that was not a good thing for me.  I also am fortunate to have a retired Neurosurgeon in my family who told me: "since I've retired, I've spent countless hours trying to talk people out of having surgery.  Unfortunately, you need it.  Now."

[selmaS]

  Oh so did ur Dr say he feels u might have non communicating hydrocephalus? As the sylvian aqueduct would be the CSF obstruction...not allowing CSF to flow from the 3rd to the 4th ventricle....

  I know what u mean about being close to rest rooms....not a fun thing to have to always think about...

  As I mentioned add ur surgery date to the thread so we can post a prayer thread for u <3

[CM2002]

My surgery was a complete success. You just need to find the best doctor for you. Good luck.

[mjsummers34]

Thanks! prayers are always welcome :).

[mjsummers34]

Thanks for your reply. I do have a csf obstruction. He is actually going into the mid brain to check a flap in the sylvan aquaduct (?) that he thinks may be adhesed together.

I know evrything wont magicaly be all better. I'll be happy to just stop the progression. And maybe be able to go places without worring about if there are places to sit and where the nearest bathroom is.

My NS is Dr Scott Soleau. I actually went to see him because he was on the list of specialist. And I;ve been happy with him so far :).

[soccero]

selma is sooooo RIGHT!!! make sure you have a chiari specialist! makes the difference! good luck! praying!

[selmaS]

  Hi and welcome to the Chiari forum,

It is true some have had the misfortune of getting worse post op....but that can be bcuz they had underlying or related conditions.they were not aware of or went with a Dr that promised the moon.....

Yes, many of us have seen great improvements...and yes, Chiari is life altering...surgery will not rid us of ALL symptoms...but it can help with some and if u have a CSF obstruction prevent or slow progression of a syrinx which can lead to perm nerve damage.

Find a true Chiari specialist is KEY !!!

Congratulations on ur surgical date....if u would like a prayer thread please post ur surgery date in the surgery date thread......