Paralysis with Surgery

[RHagwood]

Syrinx from C2-T12, no Chiari.  After seeing three neurosurgeons the one I decided that seemed most knowledgeable told me "if I was to have surgery there is a 90% chance that I would come out of surgery with a deficit I did not go in with"
I am experiencing a new type of pain that radiates from midportion of my spine around to the front under both of my rib cage is almost like an invisible line comes together in the front putting pressure on my sternum. I feel this mostly if I've been on my feet driven a car or strain myself in anyway.  It's unbearable.  My pain management physician prescribed a four wheel walker which I use around my house and it does take the pressure off and helps me to last longer through the day.  
There are times I will do the dishes and I have to lay down and I just have to cry. This disease has certainly changed my lifestyle and I am way more restricted at age 43 than I ever expected to be....
When do you know if the risk of surgery outweighs the debilitating pain and quality-of-life?  I think I am just used to going to a doctor and him "fixing me" So, as there may be no answer to my question directly; guess I just need to hear someone relate

[selmaS]

  Hi and welcome to the Chiari forum.

  I agree find a Chiari specialist to help you....some Drs have told patients there is no Chiari when there was...not saying that is the case...but do look at the possibility and see if a different Dr can offer you help.

If there is no Chiari did this Dr suggest how you got the syrinx? Did you have a trauma to your spine?

[baccalynnwv]

Are you seeing an actual TOP specialist for Chiari and srinx? If not,  I would travel as far as possible to find one. I don't know of any cases where surgery is not recommended with a syrinx.  
Do you have any cerebellar herniation at all? Most neurosurgeons don't think it's chiari unless it is over 5mm, which is inaccurate. That's why you need to see a specialist.
What do they think is causing the syrinx?

[Elisaandbucky]

You are quite young to be so affected by this pain, and I am sorry that you feel so helpless. Don't settle for one surgeon's opinion about your decision to have surgery. One good thing I had when I went for my initial appointment with the surgeon was my best friend's company. She has her own terminal condition and has knowledge about medical terminology. Do you know anyone you can ask to come with you who can advocate for you? Please let us know.