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.

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  • empath777

    Newly Diagnosed

    I haven't actually been formally "diagnosed" yet, but just got my MRI results back today, and have 3 syrinx on my spinal cord. One in my cervical spine, and two in the thoracic region. I've been having (MANY) symptoms for the last (almost) 5 years now, and have been diagnosed with Fibromyalgia, Adrenal Fatigue Syndrome, and my PCP also suspects that I may have MS, which I must admit, I've also...
  • sickkid

    Been sick forever

    Hi my name is jaidyn. I am 15 and earlier this year I was diagnosed with syringomyelia. Since 2013 I have had something wrong w me. It started out as constipation then a failing gallbladder then a surgery which led to acute pancreatitis. I have missed out on most of junior high and now I am a sophomore in high school and have already missed a few weeks of school and missed out on half of 9th...
  • Megan0123

    Syringomyelia and Chiropractic Work

    Has anyone, that has been diagnosed with syringomyelia, ever been treated by a Chiropractor? I am looking into seeing one but am unsure if it is safe to do so when a syrinx is present. I've had one person tell me they cannot be treated by a Chiropractor because of her cyst on her spine. I wasn't sure if this is just specific to her health issues or if this meant that anyone with a cyst on their...
  • deleted_user

    Is Surgery the answer?

    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...
  • jannettewatson

    Traumatic Syrinx

    I would like to find out if there are any specialists or Universities in the US that are working on traumatic syrinx pain treatment. If anyone has any information please let me know. I am still in the Army and getting ready to medically retire due to this traumatic injury and my treatment team and myself and I are looking for other options and information.
  • schnoop42

    Serious what is this thing?

    I was diagnosed with a syrinx 4 weeks after a car accident. MRI states "large syrinx located T5-T10-11, likely idiopathic in nature as no abnormalities noted, 5-6mm at widest point causing increased size of spinal cord, recommend continued neurological consults, and serial MRIs to determine clinical significance." I'm annoyed. Clinical significance is I can't work, I can't be in any one...
  • deleted_user

    any uk sufferers ?

    hi I'm just wondering if there are any sufferers in the UK
  • Hi,I had a shunt put in may 2015 in the thoractic area,i have now been told i have another large syrinx in my lumber area.I am worried asi dont want the same surgeon because surgery didnt go well and lots of complications.Any body in the lincolnshire area know of a good surgeon.Any advice greatly received . :-)
  • Ok a little background on me. In 2007 I was sent in for MRI because of headaches and neck stiffness?muscle spasms. They did brain and cspine, then full spine after they found an "asymptomatic" syrinx from c4-c6. Neuro told me, if your not having symptoms right now, don't worry about it, but follow up if you start having weakness in your limbs and sent me on my way. He never told me anything other...
  • emjayflower

    New to this

    I'm 18 years old, and was diagnosed with SM two years ago. I was a Figure Skater for 12 years and so it was ruled as Traumatic from too many falls onto my back I suppose.Recently been having a lot of back pain, like insane none stop, nothing helps the pain at all. Whenever it flares up, I lose all feeling in my left hand and leg. It becomes like dead weight.Is this bad? Or normal? I have no clue...
  • baby5

    19th month baby with Syrinx

    Hello everyone.. My baby has been diagnosed with syrinx n one is 3 mm in size and other is 6 mm in diameter.. Was wondering if any one can share doctors info who specialise in it.. It would be great help ..
  • skye1971


    hi all I,m new on here and would like to meet people who are like me well in the same boat as me I should say I,m really bad right now I,m suffering with the most chronic pain all over and nothings taking it away I,m one of those shall we say that fell through the net and got forgotten about I,m about to get referred to a specialist in this field so hopefully will get sorted but im so down right...
  • This forum has been so helpful to read, had to join. Need people who understand. Had pinched nerve causing pain down arm 2010, cervical mri showed slightly bulging disks plus syrnix. Further mri ordered and found runs along spine down to lumbar. No symptoms really at that time, said benign and no follow up needed. At end of Sept. Felt jolt down my leg, that got my attention, made mental...
  • sniffer8

    Busy site?

    I know I haven't been involved here for very long but I have to say I'm personally disappointed at the lack of activity. I've put up postings and invited responses but invariably nobody bothers? It's very strange. Syringomyelia is rare and little understood, I had hoped that fellow sufferers would therefore look to such a forum for mutual support and understanding. I regularly post on a UK...
  • I'm a 13 year old girl and was just diagnosed with syringomyeila. No one knows what caused it. The doctors can't fix me and all of my friends are being so weird. It's hard to because I have never even met someone with Syringomyeila and I just want someone who knows what I'm going through. Being in middle school is hard enough but when you add this- I'm just struggling. If you have any experience...