My son has thoracolumbar scoliosis along with his cmt. His dr said only about a third of patience develop scoliosis like my son. His orthopedic dr is talking about possible surgery next summer to fix his back. Does anyone have any info on this and maybe had to have the same surgery??
I do not have scoliosis,but I do suffer from numerous disc problems through tout my back. I have two that are pressing on my sciatic nerve and causing loss of bowel and bladder control. I was scheduled to begin the process to surgery when I had emergency open heart/4 bypasses. I plan to have something done if it is still possible. I am almost one year out from open heart. They are always concerned with more nerve damage. I wish you and your son the very best. To have both problems must be very difficult. God be with you on your journey!
Scoliosis is a secondary issue for many patients of CMT. I do NOT have any experience of this but I would recommend getting more than one opinion with any surgery issue for CMT as CMT reduces chances of healing process as we do not regeneration cells and tissue normally as normal people are able to do. Surgery can only be a possible acceleration of progression. You may do more harm, in the long run, than any good so seek lots and lots of advice of those who are familiar and experienced.
My son (now 32) had 87 degree kyphosis and 27 degree scoliosis...Fortunately, I had the finances. $1,175 MILLION dollars later, he is doing ok. Can't lift more than about 15 lbs... can't be stationary for for than about 30 minutes. This is a serious problem with CMT patients... so please.. do NOT simply disregard it!!!!
The surgeries were immense. We flew doctors in from Norway ... ended with a team of 12 surgeons... complete spinal reconstruction. 5 surgeries in all....Much of this could have been avoided had we payed closer attention
DO NOT IGNORE IT!!
I'm surely not an expert in this area, but here is some info from NIH and research gate.
Agreed, Gerald this is a serious problem that needs attention ASAP; as it can affect respiratory function as well as other organs in the body;the spine is no minor issue at all! Hope your son is coping as well as can be and able to have a certain quality of life. These issues affect the patient but also long range affect in their families lives as well.