Badges (1)

About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (2)

Nov 10, 2011 · Chiari Malformation in Brain & Nervous System

I had the posterior decompression surgery 2 1/1 years ago. Still looking for relief.
They had to remove a very large portion of skull and patch with surgical bovine.
I also had the syrinx that can be a complication where the spinal fluid was leaking
out. Took almost 4 years to figure out what was wrong with me. Now I am still in
pain and dealing with the nerve damage caused. Had surgery in Oregon after 9 months of complaining of constant pain was sent to Mayo to be checked, they
said it looked like surgery was successful. That was over a year ago, still in
phys. therapy and also on 9 med’s. The worst part is the head and neck pain
are still here. Local neurologist wants to inject botox into main nerve at back of
skull….I am looking for any information from anyone who has had this done. I am
nervous about this option, but also tired of taking all these pills especially since
I am in so much pain anyway. If you know of any info on this please
share. thanks ! Maddy32

Nov 9, 2011 · Chiari Malformation with Syrinx Searching for someone who has had a chiari in Just Want to Talk

Chiari Malformation with Syrinx
Searching for someone who has had a chiari malformation with the syrinx. Who went ahead with the
posterior decompression and years later is still having difficulties…head pain, neck pain. My local
neurologist wants to inject Botox into the occipital (sp?) nerve at back of head to try to block pain. I am two and
a half years post surgery and still a mess. On so many medications, some due to all the nerve damage that
took place while they tried to figure out what was wrong with me, that took almost four years. Other medicines
to try to block all the pain. I am still in physical therapy to try to strengthen neck muscles..leery of getting
injections and what side effects? Anyone with any experience with this?
Thanks