Diastematomyelia And Syringomyelia (spinal Cord Cysts)

I am a 40 year old woman living in North Wales in the UK. I was diagnosed with diastematomyelia, Syringomyelia (Spinal cord cysts), tethered spinal cord and scoliosis in January 2010 after experiencing severe back pain and electric shocks and weakness in my legs. Since then I have gone through 3 surgeries (1 each year) on my spinal cord. The first (May 2010) was to remove a bone spur which had grown through the split spinal cord, during this surgery they found I had a spinal cyst which the surgeon burst, the results were that I was left paralysed down my right leg and spent 3 months learning to walk again, unfortunately the nerves had been destroyed so was told that even though I can now walk with the aid of a walking stick the feeling in my leg would not return. The 2nd surgery (June 2011) was to untether the spinal cord which was attached to the coccyx bone, this surgery was a success and had no lasting complications. My last surgery (July 2012) was to re-burst the spinal cyst which had regrown, again there were complications and as well as temporarily losing my ability to walk and having to learn all over again I now also have further symptoms which include numbness/loss of sensation in my torso from the chest down, patched of nerve damage in the left leg and bladder and bowel incontinence problems.

My diastematomyelia is the result of a deformity during development in the womb and not an accident, however, the cysts may have been aggravated by a small car accident a few years ago.

I would love to be able to find someone with diastematomyelia and or syringomyelia to discuss similar problems and issues. To date I have not found anyone with either condition either here in the UK or anywhere else.
An Ep User An EP User
7 Responses Jan 21, 2013

Hi l was born with the condition of scoliosis and diastem. I was operated on aged 6. At age of 11 lost my toes on my left foot and further amputations followed. I then started having electric shocks nnerves jumping in my right leg. Now l am experiencing jumping nerves in my arms and neck servers headaches numbness and pressure in my head and face. Now l am to crutches.

Hi I have both d- myelia and s-myelia sorry to hear of you op problems I won't have operation yet even though doc said I need it doc was in Liverpool I suffer with many symptoms mainly pain but I am coping have you found s group yet as I am still looking I am in ann Conroy trust for my s-myelia but need support about the problems. With d- myelia keep in touch thinking of straying a face book page for people withd-myelia if one not alreDy about can't find much info here on net yet so will keep looking
chat soon x half pint x

I am sorry that your surgeries have been traumatic. I am 23 and was diagnosed with Diastematomyelia and scoliosis before I turned 2, as I was unable to walk. I have had 7 surgeries (although the last one was a totally normal and boring gallbladder removal!). I had my spinal cord tethered very quickly after they discovered the problem and it seems like the longer the cord is left tethered the more damage there is. I had a lipoma on my spinal cord and the removal did create some bladder control issues but if it is any consolation they have gotten somewhat better over the years. Sometimes nerves do get better but it takes quite a long time. I hope you are well as it has been quiet awhile since you posted. It can get a bit lonely having a condition no one has ever heard of!

I am sorry that your surgeries have been traumatic. I am 23 and was diagnosed with Diastematomyelia and scoliosis before I turned 2, as I was unable to walk. I have had 7 surgeries (although the last one was a totally normal and boring gallbladder removal!). I had my spinal cord tethered very quickly after they discovered the problem and it seems like the longer the cord is left tethered the more damage there is. I had a lipoma on my spinal cord and the removal did create some bladder control issues but if it is any consolation they have gotten somewhat better over the years. Sometimes nerves do get better but it takes quite a long time. I hope you are well as it has been quiet awhile since you posted. It can get a bit lonely having a condition no one has ever heard of!

I am sorry that your surgeries have been traumatic. I am 23 and was diagnosed with Diastematomyelia and scoliosis before I turned 2, as I was unable to walk. I have had 7 surgeries (although the last one was a totally normal and boring gallbladder removal!). I had my spinal cord tethered very quickly after they discovered the problem and it seems like the longer the cord is left tethered the more damage there is. I had a lipoma on my spinal cord and the removal did create some bladder control issues but if it is any consolation they have gotten somewhat better over the years. Sometimes nerves do get better but it takes quite a long time. I hope you are well as it has been quiet awhile since you posted. It can get a bit lonely having a condition no one has ever heard of!

Hi, I too have been diagnosed with diastematomyelia, tethered cord and spina bifida occulta. The spina bifida I've known about all my life but the other two were quite a shock when I found out quite recently. I live in the UK too. It's nice to know that I'm not alone.

I, also, have diastematomyelia and syringomyelia . I have been extremely fortunate in that I have known about scoliosis since 13 years but nothing of the other issues. Three years ago, at 68 years, I began having terrible back pain and had an MRI. Two years ago, a surgeon put a stunt to help the fluid drain from the cyst. It did not go well. The surgery caused nerve damage and did not help the back pain at all. I go to a pain management doctor but drugs do not help. I wish I knew if spinal cord stimulator would help. As you know, this condition is so rare, finding someone that's tried it would be great. FYI, I live in Texas.