Rhizotomy – Surgery is never an easy answer
So the braces question that I posted in my last blog brings up a surgery we have been considering for my daughter. The surgery is a Selective Dorsal Rhizotomy (SDR). This is a surgery where the doctor cuts into the back and goes into the spinal cord. They then stimulate the nerves to see which ones are causing the extra noise and creating the spasticity. Once the nerves have been identified they cut those feedback nerves to minimize the spasticity. The objective of the operation is to allow my daughter to move more smoothly. She will not gain the full control that a “normal” person has but she should have more fluid movements which would allow her to run more easily, climb stairs and obstacles, and hopefully fall less.
I’ve spent the last few weeks talking with parents and people who have had the Rhizotomy and most feel the results were worth while. There was one person who had CP has not had the operation done and felt that the operation was bad. One parent said that they did not have a good experience with the operation. I spoke with a women who said she had it done and it worked until puberty kicked in and then the spasticity returned. Most recently I’ve spoken with 4 parents who have had the surgery done on their children that were very happy with the results. One parent had the operation done on her child when he was 8 and thinks it’s the best thing she did. Her son is now 18 and doing very well. The other parents had their children worked on this past year and feel the results early on are very good. One little girl had the surgery done when she was 4 and the before and after video are truly encouraging. I’m including the videos below along with some other videos I found on YouTube so everyone can see the results.
We are tentatively planning on the surgery for Haley next summer and will go forward with it unless something drastic changes between now and then. I’m hoping to have a radio conversation with some of the parents over the next few weeks to discuss the surgery, the results and the PT necessary after the surgery. It’s significant physical therapy and will require a great effort. The program will be conducted as a sort of round table assuming I can get the participation. Enjoy the videos. I’ll be posting some of Haley over time as well so you can see her current performance and then after the surgery how things have changed.
All I can say is WOW!!!!!. Haley is fairly similar to Emily based on level of involvement (how affected she is by the CP).
I don’t know if Andrew has any Pro SDR video but Here is the progression of his post op videos.
4 days post op
2 weeks post op
3 weeks post op
4 weeks post op
3 months post op
This video is just very moving and an incredible success story for SDR. Wheelchair to walker to??? It just brought tears to my eyes. You go Henry!!!
If anybody reads this and has had the surgery done please, please, please share your thoughts in the comments below. Let this page serve as a resource to those who are thinking about the surgery.
