just diagnosed with Syringomyelia
 

after a long battle i was finally given the bitter sweet diagnosis of Syringomyelia....the only option is surgery...i'll take all of the information i can get at this point...the best surgeons, the procedure, the after math, etc.etc.etc.etc.

thanks!

hey
 

:confused:
hey i was just dignosed with SYRINGOMYELIA yesterday 10-11-2011 n it is really hard to take it in n i am really scared too.i go see a neursurgeon next week and ive been have neck pain n leg stiffness n balance issues n also my hand n fingers been going numb still after i got my carpal tunnel surgery.

I was diagnosed 3 years ago and I didn't do research and ignored it completely. I mainly did this because a I had a neurologist who said there was nothing that could be done, these are rare and that was that. My pain and symptoms are worse and I have stumbled upon this group. All of a sudden now I get it and now Im scared:( Im glad this group is out there though.

me too
 

i also am new here but i'll figure out how it all works. i wwas Dx about 10 yrs ago. luckly no change in 10 yrs. docs say i may have had syringomyelia since 1976. as most of us know they realyy can't tell whenor how we get it. the pain is unreal and at times hard to explain. mine is in my neck very small compared to most for sure. i use to go to another chat site yrs ago. i am glad i found one again

i have what i call SM (SyringoMyelia) too
 

it is very scary finding out you have something docs say that can't fix. i have been living with knowing i have it for about 10 yrs. it is still scary for me not know if i lift something or bump into something what might happen. i feel there still isn't enough known about it.

All Syrinxs do not require surgery.
 

Do you know what caused your syrinx? Surgery is not always the answer. I have a syrinx and once then figured out why I had the syrinx and repaired the problem (which is usually chiari or tethered cord) then the syrinx may shrink. There is no reason to have surgery on a syrinx unless it is extremely large and damaging. Do not let anyone talk you into surgery for it unless you have multiple opinions that surgery is required. Each time you have a surgery you are damaging something else. Trust me. I have had enough surgeries to understand that. It can always get worse! Having a syrinx is not the end of the world. It does scare you to death when you first hear you have it, but I was diagnosed with the syrinx back in 2006 and have yet to have to have surgery to reduce it. What size syrinx do you (y'all) have? Why do they feel surgery is necessary? Have they explained to you the complications that could happen like arachnoiditis? Arachnoiditis is a horrid condition that nobody should have to live through and it is usually caused by unneeded incredibly invasive surgery. Please look up the term and discuss it with your doctor before you agree to have any type of surgery at all. Also, find out WHY you have a syrinx! Good luck to all.