Congenital multiplex scoliosis
Posted , 2 users are following.
Hi!
I would like to ask has or had someone about a same or something like of my spine? If there was, what kind of thretment, maybe surgery was done? How he/she feels after that and now? I am now a little sad, upsat and dissappointed because the doctors, whom i visited so far, told me, there is not mutch can be done, the neurosurgen said, only one option, full spine fusion from C1 to L5, but rather dont do it! Losing full flexibility and partially too, that's very bad news. I would like to straighten? it as straight as possible and dont know yet if it's a possible or not.
The lumbar section wouldn't be so important. I more worry about my Thoracic-cervical level because there is a Wegde-shaped vertebrae what is the cause of my neck problem. It hurts when i twist my neck, there was a some moderate finger and glutealis paraesthesia but at the moment it disappeared. And sometimes i feel back pain too. And an interresting thing, when i drop something or falls down to the ground and i try to lift it up so, the stuff is behind my ankles, as a bend down with my left arm, at a point this arm gets compleet paralisys for 1 secund. Actually the diagnosis is C1-2 are fused together and at the upper cervical level some of my process transverses at the right side are fused togedher too. Between the T3-4 vertebraes is a vedged one. Thatwhy i have ( as long as i remember) decreased head movement, but it's fully okey, my neck was never so mobil as the other kids and i never suffered from this. The main problem as i see in the mirror, my neck goes slowly left, compared to the midline of my chest. I swimm and doing exercises to prevent this and it seems a little to work but i feel it wont holting it from bending too long. I fear to sleep a little because a mounth or som weeks a go too, when i woke up, i felt serious pain and i touched my neck and see in the mirror, it bent a little and was a little closer to my left shoulder. I felt is around 4 times in the last 4 mounth if i remember correctly. It seems the vedged vertebrae is the root of my problem..and the others above. My lumbar section has a vedged vertebrae as well but i can take it.
0 likes, 4 replies
margaret85310 gabor21035
Posted
Hi,
My scoliosis doesn't sound quite as involved as yours, but I had my rods inserted when I was very young (age 11). My top 4 vertebrae are fused, but it doesn't really bother me - people just think I have excellent posture because I literally can't slouch (!)
My surgery was very successful in stopping the progression in my upper back, according to the drs I would no longer be alive if the twisting hadn't been stopped. I had really no pain or problems until I was in my late 40s. My lower back/tailbone developed a pronounced curve due to walking for so many years on a short leg. I became quite crippled by the pain and could barely walk. I was told my only option was to fuse my lower back and insert more rods.
Instead, I began practicing Bikram yoga. Within a few weeks, my pain was completely gone, and I have developed wonderful strength and flexibility in my spine. It's now over 4 years later, and with a 2x weekly practice my pain has yet to return.
gabor21035 margaret85310
Posted
Hello!
Thank's for your reply! Because i am 43 year old, i do not know how successfull my surgery will be if i go under it.. I would like to ask, can you move, or better say, turn your head left or right? How is it to dive car, if you should? i'm thinking fof, when i have to look into the left or right mirror, is it harder or acceptable because the lower and the top back moves in that case?
And i will take your word, i try this yoga or some kind of one, lets see what happens..
margaret85310 gabor21035
Posted
Hi,
My neck was not involved in my surgery, so it was not affected. I noticed that it's now easier to turn and see over my shoulder when I drive because I'm able to rotate my entire spine better, not just my neck.
Please be aware that all yoga is not the same. I actually caused a terrible back sprain trying kundalini yoga, which is practiced in a cool room with straps and blocks. I had a strap under my foot to assist with a ham-string stretch and really did in my back.
Bikram uses no props and is practiced in a hot, humid room. It's gentle stretching and movement, but also very challenging due to the heat. The heat relaxes tight areas and allows for greater stretching. Because there are no props, your movement is limited to what your body can do on its own, which is much safer, IMHO...
gabor21035
Posted