Connect
I have a syrinx and can't find a doctor that knows much about it?
Im desperate for relief in my neck, brainstem area. I am numb in every limb, random Nausea, circulation issues, i am desperate for any direction on how to go about getting an appointment at mayo or anyone who knows a surgeon familiar with syrinx?
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
centered at the
level of C6-
7
Thoracic syrinx. It's been seen on 2021-2025 mri's i think t8 & t9 I'll double check.
Find a neurosurgeon. They will be familiar.
I have been to 2 neurosurgeons
@kritter19 I was referred to Mayo (MN) by my orthopedic hand specialist. Was diagnosed and had successful surgery at Mayo. I go back annually for checkups and get a full head/spine MRI every two years. I was diagnosed with both Chiari Malformation and Syringomyelia. It will be 10 years this August when I first walked into Mayo.
If you have any questions please feel free to ask me.
Exciting news for me. A few days ago I was speaking with a co-worker from another dept where I work. Main conversation was work related, but some how we first started out asking how each other was doing. Long story short we discovered we both had brain decompression surgery for Chiari. They are celebrating 20 yrs and I am celebrating 10. This is the first time I ever encountered someone on a personal level that knows exactly what I am dealing with as they have gone thru it. I have very supportive family and friends, but to have someone who is working at the same place I am to talk to is huge. We laughed as they are newer to the company and I have been with there a long time, so they will ask me for the work questions and I will ask them Chiari questions. I have work experience and they have Chiari experience. So it is a win win!
Best wishes in navigating your journey to get answers. It will be a journey and it will be challenging at times, but don’t give up in finding answers. I will admit that my journey was long and tears were shed along the way to get to Mayo. But now I can look back and see my journey had to play out like it did to get me to where I needed to be with the most amazing doctors and staff at Mayo.
It’s a rare disorder, which I’m sure you are aware of. It occurs in 8.4 per 100,000 people and I doubt you’ll find a neurologist or neurosurgeon who specializes in this rare disease. You may find some familiar with it though, good luck.
Thanks so much fir that....seriously! I do feel alone in this even tho i have the most amazing husband ever. No one can understand unless u r dealing with it u know....i have so many questions so let me condense to shorter list:)
I'm at the stage of trying to figure out what kind of syrinx it is. I just compared my older mri to most current and it went from t7-t8 now it's t5-t9
Pain management doc wants to do another complete cervical radio frequency ablation bilateral this coming Wednesday.....i did this with a different doc almost 2 years ago with no relief ...New doc says to trust him, that he doesn't think the last doc went in in the correct area????
Thanku for your message....
Is a syrinx a disease?
If you go to asap.org there is a list of dr’s on medical board that specialize they are mostly pediatric neurosurgeons who also care for adults as well. In our case we were told our child’s syrinx ,it couldn’t be drained as they said it would come back again and that where it is located in our child there was no room for a pain stimulator so his pain is managed with medication, and meditation to a degree. Went to neuro pt which has helped too and learned meditation. You can find people to talk with there as well that have same condition