Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

1 Online
  • Morning_Glory1

    I'm new here!

    0
    I had a workup 4 years ago for MS, including MRIs of my brain, C-spine, and thoracic spine.  MS was ruled out but a syrinx was found from T4-T10 (all the area that showed up on that MRI).  The neuro only said it had nothing to do with my symptoms, which are burning and numbness from my feet to my face/scalp.  Sometimes I have a sensation of ice water running through my legs, and sometimes it...
  • geiger96

    Pain from Syrinx of the T 7 /8 Thoracic spine

    2
    Hi I am 59 and I am having continous pain in the center of my back. I had a bone scan a Ct scan and they said I has D I S H . I went and did all types of treatments and different drugs. I them had a MRI and I was told I had a Syeinx at the T 7 / 8 and the T 11 / 12 . The T 7/8 was 4 mm . I was told to see a nerosurgion and I did. He sent me for a spect ct and is  folling up with new MRI 6 months...
  • LoriA

    New to this site

    1
    Just found out my syrinx has grown to 16 inches. T1-T12. I now get almost daily migraines. Electric shock feelings in my head along with numbness in my face. I now have neuropathy in my fingers. My hands go numb and tingle. I get electric shock feelings in my back and have numbness. I have severe reflux. I have had to have stomach surgery to repair the damage. My vision is very bad, I usually...
  • Joyandloni

    Syrinx

    1
    Hey I just got diagnosed with syringomylia and it has been a nightmare.Chronic pain in my thoracic area, my right hand is hurting, my left foot is numb, twitching of my eye and loss of balance. The doctors said the surgery to fix the syrinx is not going to help me it would make matters worse. I am on nerve and pain meds but there got to be some kind of treatment out there? 
  • deleted_user

    Is Surgery the answer?

    8
    Hi there, I'm a 30 yr old wife & mother of 3, I found out about my syringomyelia about 1 1/2 yrs ago, after complaining of neck pain I was orderd a MRI, well nuero symptoms weren't too far behind. I have a very large syrinx at C4 - T2 and it takes up the entire width of my spinal cord. I have extreme pain in my neck and upper back, numbness & tingling in both arms and sometimes my legs. I have...
  • marmaduke

    Looking for others who have Syrinx

    0
    I am a 50 yr old woman who was born with issues. I have recently been told I have Syrinx in two places. I had a brain injery as well as a humped back and one of the places I have the syrinx is in a spot where it could make me become a quadrapelegic. I am already a parapelegic and I'm really scared! The second spot is near the base of the spine which is one reason I am in this chair. I have lots...
  • wontgiveup

    Thoracic Syrinx

    1
    This is my first post.  In Dec. '16 I had a neurostimulator implanted to help with pain caused by CRPS.  All the wonky feelings that were supposed to resolve, never did.  The stimulator helped with the CRPS pain, but after 7months, we had it explanted because of loss of sensation, altered sensation, bowel changes, wierd itching/burning in flanks.  With it removed, I was able to have an MRI...
  • kduckett

    26 year old female.. help. :(

    5
    Hey there, I am new to this group. I am a 26 year old single mom of a 3 year and a 1 year old. I am in Alberta, Canada. In September 2011 I was in a serious car accident that I should have died in. I have been in extreme pain in my mid andlower back ever since. In October 2016 my pain got even worse and I was getting numbness and tingling in my legs. My doctor diagnosed me with sciatica. She said...
  • JoshP

    Post from South Korea

    6
    Hi, I'm a 20 male in South Korea. I've just got here to ask some questions about syringomyelia. I have a syringomyelia near T-4 level of spine, and I found it last October. I had no symptoms at all until last September but I suffer legs weakness with the feeling my calf strained , and frequent peeing (5-7 oz per void).Anyway, in South Korea, we have an online group of syringomyelia (also for ACM...
  • kduckett

    Anybody in Alberta?

    0
    I am wondering if anybody else on here also lives in Alberta. I am looking for names of neurologists and neurosurgeons thatI can see about getting a referral to. I recently found out I am going to be waiting over 3 years to see neurologists in my area.. Considering I have waited 6 years to get to this point i cant imagine having to wait another 3, maybe even 4 years, just to see someone. I get no...
  • spken82

    New and need help. Syringomyelia, no Chiari

    I am new to this group. I'm a 35 year old stay at home mom living in Canada. I have 5 and 8 year old boys.I started experiencing symptoms 4 1/2 years ago (mainly dullness in left leg/foot and weird sensations that would jump around). Took a while to get in to see a neurologist, who gave me an MRI. I was convinced he would say I had MS because my symptoms were so similar. He says no MS, it's just...
  • Noluck2017

    Recently diagnosed

    4
    Hi, I've been having back pain for a few years now. Started with pain zinging down left leg and stopping at knee.  Lumbar was the outcome determined, which was diagnosed as lumbar facet joint arthritis and degenerative disc. Facet block injections seemed to help.  Over the course of the last year I started getting tingling, spasms, stabbing pain in mid back.  During that same time I had a...
  • jsj43

    Surgery results...?

    3
    Hello, just signed up to give and recieve any info on syringomyelia and the syrinx's we have.. Ive been through 6 mri's to monitor a sryinx found in my thoracic region. Have a ct scan this friday and a second opionion next week with a specialist. Ive read a few post realated to pain and symptoms on here but not much about having spinal decompression surgery, results of it, recovery, etc.. Has...
  • Canuck1

    My story and what has helped

    5
    The interesting part of my story is the fact that while I have had symptoms for the past 40+ years, I wasn't actually diagnosed formally (via MRI) with having a Syrinx until I was mid 40's.  I may have been born with my Syrinx as it turns out and there is no sign of cerebrual leakage....it's just there.Over the years, I have seen a variety of doctors and specialists that assumed countless...
  • FloridaGuy

    Syringomyelia, tethered Anteriorly.

    0
    Hi everyone, My name is Ian. I'm a 50 year old male who had a spnal cord injury the day after my high school graduation.My syringomyelia is at C-6,7  and It has tethered itself to the "dura". the inside wall. From the MRI image it looks like it is tethered in 1 place anteriority & 2 places posterior.My Neurosurgeon says he can un tether the posterior, but it is to risky to manipulate the spinal...