lburg

I am a 43-year-old woman with CP. I have just heard about a 13-year-old boy with fairly severe CP who is due to have rods put in his back. I am personal friends with two adults who have undergone this procedure with terrible results, and have heard of several children with similar negative results, although I don't know the children personally. Both these friends have had the back surgery redone several times with more disastrous results each time and their backs are now in such bad condition that neither doctors nor pain clinics want to touch them. They both had mild to moderate CP, could walk, and were completely independent fairly happy adults before surgery. They had a fair amount of back pain and were told surgery would help. They now are in wheelchairs, need help in almost all their daily activities, can basically barely move and are in constant excruciating pain, heavy drugs (one on morphine), and have had many moments when they thought death would be better than the lives they now have. The children I've heard about are more severely disabled and went from being able to perform some activities to being able to do nothing at all. One was non-verbal, but very outgoing before the surgery and shut down & cried continuously after. I have never heard a success story with this surgery for people with CP, although maybe there is one. The backs become temporarily straighter, but my two friends experience was that the same spasticity that caused the back to be crooked in the first place literally pulled the rods apart, causing bone fragments to press on nerves and organs and various other serious health complications. Their functionality went very quickly down hill and continues to do so. I hate to hear of a child as young as 13 having this kind of surgery facing a lifetime of the hell I've seen my friends go through Can anyone, professional, parents, or adult with Cerebral Palsy provide me with information about others who have gone through this surgery, what their long-term outcomes were and the problems they now face? I feel the parents of this little boy should have this information before going through with the surgery. Also, does anyone know of good support groups and information sources, either conventional or online that the people can turn to for support after this kind of surgery? I can be contacted at lburg@wi.rr.com.