Syringomyelia pain

I have been diagnosed with Syringomyelia about 8 months ago. I seen 4 different doctors and never got any answers on what to do next from any of them. I am not sure if i have Chairi or not? One doctor referred me to another because he said my brain MRI showed abnormalities. Then the next doctor said my brain MRI is "unremarkable" and he thought i was too anxious about my Syringomyelia. Another doctor (spine specialist) told me i do have a Syrinx, but "its a small syrinx and nothing to worry about"? So i am too the point of doing what i can to deal with this on my own.

I see a pain doctor, and my pain is still persistent every minute of every day. On top of Syringomyelia they tell me i have herniated discs, spondylosis, arthritis, etc etc..For some reason, i feel as if most of my pain is do the Syrinx. The pain is a general, weak, shakiness, all over my upper back and upper arm area. As the day progressess my back feels weeker and weeker. I sometimes feel like i have rubberbands around my biceps.
Can anyone give any input on Syringomyelia WITHOUT Chiari Malformation?? Most everything i read is Chiari related? Should i be seeking the help of yet another doctor, for the Syringomyelia? And what do most of you do for pain relief? Thanks so much, any input would be very appreciated.

[Shane99]

Syringomyelia is basically a build-up of fluids in the spinal cord. It generally occurs with Chiari, but can exist without it - as I understand it.

You mention that you've seen at least three doctors, right? How many were neurologists or neurosurgeons? The main thing you need to do is find a good neurologist or neurosurgeon. Sounds like the doctors you've seen can't get together on things. Keep looking till you find one that listens - one good doctor beats all the bad doctors when it comes to your health. Most other doctors have barely heard of Chiari or Syringomyelia . My personal family doctor told me that he had taken one class in Chiari during medical school, He finds me to be an interesting patient, because I am a "challenge" to him and he's going to have to read up on it.

Good luck.

[smcondition]

I also have done the same thing, first started with doctor diagnosing for carpal tunnel, cyst in wrist and fibrosis, then mri of neck, found syringomyelia, two bulging disks, and arachnoid cyst. My neurosurgeon also told me the syrinx was too small to do anything about, have been seeing a pain management dr as well, just seems like we are going to be doped up on pain pills for the rest of our lives and I for one don't want to do that, did your dr tell you to come back in three months to see if syrinx has grown? Mine did maybe look into that? It is a wait and see game, why can't they take care of it when it is small so that it does not grow and cause more damage? I even asked a dr at the local emergency room and they looked it up on a palm palm and said that there was no treatment given!!!! Can you imagine if we are in so much pain one day and have to go there?  There are many web sights that do have just sm without chiari but no info on what we can do besides what we are doing, best of luck to you and your family let me know if you have any breakthrough information.

[selmaS]

Hi....glad to see u back on the forum...but I am so sorry u r getting the royal run around most of us seem to get.

The brain MRI that showed abnormalities, but then the next dr said was "unremarkable" could be saying it is insignificant...too many drs see chiari and use these terms as they do not "feel" chiari is an issue and do not tell the patient.

I would suggest u request , if u haven't already copies of all MRI's and test's including the reports, so u can solicit an opinion of a chiari specialist...who would be a great person to talk to about ur syrinx as they do treat both....and generally have more knowledge on them then other NS,and NL.

"selma"