Hi and welcome to the Chiari forum,
You are correct, in if you have a syrinx it needs to be looked at or monitored by a specialist like those at TCI or Dr B at his new location.
This thread tho is old from 2011 and the person you directed your comments to may no longer be an active member.
May I ask how you are doing with your syrinx?
hi,
I too have a syrinx. It's between C5-7. Dagnosed around 2004. I have only minimal symptoms, thankfully, but I have NEVER heard of one diagnosed as a "benign" syrinx! If you have one, you have one and who is the radiologist to say it is benign (not symptomatic)?!
Yes, you MUST see a neurologist who knows about syringomyelia. On Long Island, NY, there is The Chiari Institute. The Drs. there, last I knew, were Dr. Roger Kula and Paolo Bolonese (sp?). I went through two full days of testing there. Also, now here in Poughkeepsie is Sol Mora who used to work down there.
Must o for now. Good luck! I'll check back.
Ugh...well I am sorry that it took so long...but it seems to be the case with most of us. I am told that the average Chiarian takes five years to be dx'd and a lot of the time they have been misdiagnosed with some kind of psychiatric issue first!! Absolutely ridiculous!!
Anyway, I am glad that you are starting on investigating specialists...good luck and let us know how it goes!
*Stormy*
I actually was just diagnosed with chiari in january.I had all the symptoms for about four years and the doctors could not figure out the problem. I am going to be searching for a chiari specialist at John Hopkins Hospital in Baltimore Maryland.
Hello...I don't have a syrinx either but I do have experience with the fact that even letting the Chiari go untreated can cause a lot of consequences! The presence of a syrinx suggests to me that you probably have a blockage of CSF flow and the syrinx is the result of the high pressure it is causing on your brain and spinal cord.
I would definitely start looking for a Chiari specialist as soon as you can!
Good luck,
*Stormy*
Hi...I do not have a syrinx, but had surgery to help prevent the formation of one.Yes, they can continue to grow, but they can remain at the same size for a long time too.
Go to a true chiari specialist to see how this syrinx is impacting u and ur overall health.
"selma"