T12 /T11 disc hernaition and resultant myelomalacia

[mandyjane46]

I suffered a double disc prolapse (t11-12) in July 07. I was told it was causing spinal compression at casualty but once I got to the neuro logical unit the same day  they said it wasnts. I was left untreated until July O8 by which time I had bowel retention,urinary bouts of incontinence ,severe right leg weakness and perineal numbness. I went to a city hospital and had decompression surgery for T11-T12 and was told I had conus medullaris syndrome. Currently I am told,since surgery that I have myelomalacia. I still have a small amount of flaattening of spinal cord which is made worse by the deformity caused by a significant kyphosis at this point (T11-T12) .I am still on double crutches,have poor control of my right leg , after 6 months . The pain is very severe around my rib cage on any kind of movement longer than a few minutes is causing severe radicular pain and referred pain at the base of my neck. I am also told that the kyphosis is causing much of the pain and it could get worse as could the shrivelling of the cord at the injury site. I am no longer incontinent but have to manually evacuate as I have lost the anal sphcinter reflex apparently
Im a single mom of one son. can anyone advise me of any way forward. I am trying intensive physio, "swimming" with floats. I need heavy pain relief just to function daily  and ,alto Im a sunny sole, I find it all very challenging as does my poor son as our life has changed so much. My last surgical visit mentioned a future consideration of a surgical straigening of the spine with rods if the curvature doesnt improve. My initial thoughts are terror but then so is the prospect of a life like this . I know Ill never nbe a sports woman again (I used to play tennis competitively in a club) but I would so much hope there are some options left. I used to teach specail needs children and would love to function enough to get back to work. ANYONE OUT THERE.Any input from your own experiences? Treatments? Areas of excellence(ILL travell or get advise from anywhere that could help me)Thank you for taking time to help.Thankyou so much
AJ

[selmaS]

HI Mandy...feel free to contact me at ne time......

Good luck

"selma"

[mandyjane46]

Thank you for yr post.Yes I did have MR1 initially of whole spine...I have a C5-6 slight bulge and lumbar was fine.
Yes thankyou lll look at the syringomyelia..I may get back to u if thats ok..I so appreciate you posting thanks Selma
mandy

[selmaS]

Hi and welcome to the back and neck support forum.

May I ask did u have MRI's of ur lumbar spine as well as ur thoracic?What about ur cervical spine.
I am the CL in the chiari/syringomyelia support forum and ur condition may indicate those conditions as a result of a trauma.
below is from the web:
******************************************************************************************************
Myelomalacia has been reported to produce symptoms as early as 2 months and as late as 25 years after injury. Cystic myelomalacia may be a precursor of post-traumatic syringomyelia.
****************************************************************************************************

I invite u to read thru the Health Pages in the chiari forum on syringomyelia.

"selma"