Recent Dx of syrinx.. need advise
 

Frown 2cm Syrinx and no help...
I was on vicodin and muscle relaxers for the last 2 yrs because of burning/sharp pains in my neck and shoulder blades. Some days I can't even move my head. So my FMD finally orders an MRI and it shows degenerative disk disease, 3 herniated disks impinging on the thecal sac, and a 2 cm syrinx. The pain has gotten so bad, I sit and cry most days. Calling off work so often, I am surprised I haven't been fired yet. So I go to a neurosurgeon because now I have trouble walking, and she tells me I am not a candidate for surgery.
The Syrinx is not causing the pain, numbness, headaches, nausea and slurred speech. So I go to another doctor who prescribes therapy, injections in my neck, and neurontin. No one will give me anything for pain and I feel like a complete waste to my husband and 3 children. I live in PA and can't seem to find any doctors who understand this condition. Everyone I talk to medically make me feel like it is just degenerative pain. No one has even said Syringomyelia. Do doctors just not know what it is or am I making it worse than it is. Help please, before I crawl out of my skin....

Hello,

I saw this part and "burning/sharp pains in my neck and shoulder blades" - I have a few questions, since you state the syrinx isn't the cause of pain.

What levels are the 3 herniated disks at?
Is the DDD at all levels or or certain areas?

If the drs don't believe those are the cause of your pain - could it be from some sort of repetitive injury?
What kind of work do you do? desk/computer/repetitive/sports injuries/falls/previous whiplash??

There is a condition called thoracic outlet syndrome {TOS} that can cause neck, shoulder, upperback and even elbow and arm/hand pain & symptoms. It generally will not show up on tests or MRIs, just like most repetitive strain injuries. If this might fit we do have a TOS forum here for more info.

The herniated disks are at c4,5,6 and the degeneration is throughout. I feel my symptoms are because of the syrinx but no doctor will listen. Syringomelia was the dx from my FMD but no other doctor.

Well, according to what I just read when I looked up syrinx, this is what it said: Syrinx is a pathological cavity in the spinal cord especially in syringomyelia. So perhaps you DO have syringomyelia??? I don't know.
Just thought I'd pass along what I read ~ I looked it up in the Medical Dictionary. God bless. Hugs, Lee

Thanks Lee.... I've been researching alot. My husband thinks I read to much. :hug:

The syrinx can be asymptomatic. I have a syrinx extending from C3 down to T1. I have moderate bilateral cervical stenosis at C5/C6 with milder changes at all other cervical levels. The syrinx was found back in 2003 after an MVA. Mine is periodically monitored for growth (i.e. increase in the width and/or length). I've been to several neurologists, neurosurgeons and physiatrists over the years. Not one of them seemed knowledgable on the syrinx. If you want to see someone specifically regarding the syrinx to rule in (or out) that it's causing you problems, you need to check out the ASAP.org website and try to find a practitioner near you that has worked with syringomyelia patients.

I feel that we are in the same shoes. I suddenly began having back issues and spastic issues. Now I have a lot of pain. I have been given the dx of syringomyelia. It is small too about 2 cm but long from c5-6 to t-56. I am very worried and I don't feel that I have found the right doctors. I'm told that they'll monitor it. How do we find specialists near us?? I live in Lincoln,NE