any advice on the decompression surgery?
Posted , 6 users are following.
After 30 years of being fobbed off with migraines and tension headaches I have now been told I have a chiari malformation and syrinx. My consultant also said that there is no flow around the back of my head which is causing the shoulder pain and headaches. He said he can justify me having the surgery but I said I would rather have a checkup in 6 months and then decide. I was ok yesterday when I had the appointment and was told all of this but today I feel really down especially as it looks like surgery is not always 100% successful. Can you let me know your surgery stories, good or bad, so I can make an informed decision? Thanks
0 likes, 5 replies
coleycol94 vicky42275
Posted
I had decompression surgery in August and I had similar issues the fluid was not flowing properly as well. After the surgery my headaches went away but now I have nerve damage on the right side of my head. I would rather deal with the numbness than to have the headaches. I would say have the surgery you will benefit from it....
hayleybell vicky42275
Posted
I was diagnosed with chiari 7 years ago & am now facing the choice of surgery. I have decided to go ahead with it to hopefully stop the progression of my symptoms. I have no syrinx.
Perhaps it would be a good idea to get a second opinion or go back armed with questions & take someone with you to help with your decision.
Chiari surgery never promises to make you a 100% better but does try to prevent your symptoms from getting worse.
There are lots of websites about chiari but stick to the UK ones. The Ann Conroy Trust is worth a visit & has patients stories on there that may help you. Also, check out the Walton centre, Liverpool. Superb team of specialists in this field.
Good luck!
shaun122378 vicky42275
Posted
Keko vicky42275
Posted
First and foremost, please learn as much as possible about CM as you can, so you can make an informed decision, but also research your DOCTOR as well. Your NS sould be a chiari specialist, focusing (solely) on CM and all related conditions. It is so important that your Dr is a specialist.
I have seen too many people worse because their doctor was not a specialist in CM.
I was very anti surgery. But I eventually found a NS that i trusted with my life. He did my surgery in 2013 and he did it RIGHT.
No - I am not cured, but he saved my life.
I run a support page on FB cthat has over 1300 members who support each other. Please feel free to join us.
Leggs vicky42275
Posted
It seemed a no brainer of s decision ( please excuse the pun )
I' had 20 years pain and symptom free and now 10 years of uncomfortable but controllable headaches . Now vision and black out issues
I am very happy I had the surgery , it most definitely gave me a life .
Good luck
T x