#HELP ANYTHING MORE THEY CAN DO?

[tifffanylynn]

Hi I'm Tiffany. I have a C2 Syrinx. Posttraumatic SCI. I got a Laminectomy to try help symptoms. My surgical site got infected, so they had to reopen it, wash it out.  Symptoms didn't improve. So my Dr. put a shunt. My symptoms still are worsening. I don't know what to do. I can't move a lot since my SCI. I just wanted to not feel alone. I'm terrified of loosing my ability to breathe. I already can hardly feel my face. Symptoms I have seems more complicated. Ringing in ears, blurry vision, taste. and smell come and go. My mouth goes numb. Face symptoms started on the left, now both.

[selmaS]

Hi and welcome to the Chiari forum.
WOW, I am so sorry to hear about your issues.....most here have a syrinx due to a CSF obstruction due to having Chiari.....we have not had many that had a SCI causing the syrinx.

May I ask, did you see a Chiari/Syringomyelia specialist?  Even though you do not have Chiari...having a Dr that not only specializes in Chiari and Syringomyelia, they also do research and are well aware of other related conditions where a NS may only look at the syrinx and not what else might be going on.

[tifffanylynn]

I know my Dr is a neurosurgeon. Where could I get a 2nd opinion? I had 1 spinal tap for a bump trial, causing migraines, then a 2nd spinal tap to relieve pressure from too much csf. I had the thought that too much csf caused it or that my syrinx is more complicated.

[selmaS]

When you research the Dr, how is he/she listed....if Syringomyelia, and Chiari are not the first two treated conditions, they most likely are not experienced enough or researched your condition to know the best way to treat. May I ask where you are located? Drs that are well informed and experienced are not easy to locate and many of us travel to get to them , so it depends on where you are and your insurance.

[tifffanylynn]

Omaha Nebraska

[selmaS]

Unfortunately, we do not have any Drs listed for that state....any states close by you can go to with your Insurance ?