Count Down 3 weeks – Selective Dorsal Rhizotomy

Posted under Cerebral Palsy by admin on Wednesday 5 May 2010 at 1:34 pm

I started writing this blog yesterday and was filled with trepidation. You see our friends that had participated in the stem cell study have found that they are having great success. I even talked to a few other parents who participated in the study who are also having great success. Unfortunatly or furtunatly there are no other ongoing studies that we could get Haley into right now although I believe we could get the same treatment if we pushed hard enough and went to Mexico. That said there still has not been enough study on this therapy to validate 1) that it will  help Haley, 2) that the effects of the therapy are long term, 3) that there will be no longterm side effects, 4) That it gives Haley the best chance right now. Still the results that the parents who participated in it are seeing are increadible and make me very hopeful for the future of this treatment option.  As for us with the sound thinking of my wife who helped me think through the above four points, we believe that the SDR while a difficult surgery is still the best treatment option for Haley right now.  The one thing I needed to know in addition to the above facts is; Will she have longterm loss of feeling if the stem cell treatment does become an available option?  The short answer is “No” there are 5 major dorsal nerves with many nerve rootlets. The surgery only severs some of the rootlets on some of the dorsal nerves. This creates for initial sensitivity loss or initial hyper sensitivity but over a short time the brian adjusts and there is no evidentual loos of felling over the long term for any patients that have had this surgery.  So there you go.

Progress Report – Three weeks left. We are still doing exercises regularly and I will problably video some of them along with some walking over the next few days. This will give a good before picture of how well Haley is doing and help to show other parents how the surgery affected her. 

If you happen to be a parent who has had to make a tough decision about a surgery like this please feel free to leave comments and feedback. I really do love to see comments and try to respond to any that are left of the blog. It’s great to get additional insight from people with different backgrounds.

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  • Nicole

    Hi.  I just came across your blog tonight.  My daughter is 4 and we are thinking about SDR.  We went to St. Louis and met with Dr. Park, who did say she would benefit from the procedure, but our insurance will not cover it out of state.  We live in GA and will be going to meet with Dr. Boydston in Atlanta in a few weeks.  If he feels she is also a canidate we have to decide to do it with the best doctor(Parks) and raise all the money or go with the dr. that our insurance will cover.  I don’t know how to make that decision.  How was your daughter before SDR?  Was she walking  unassisted? How old was she?  My daughter uses a walker and is not able to stand by herself.  I would love to get any adviice you may have.  Thanks.  Nicole

  • http://www.TheDADvocateProject.com Anonymous

    I wish I could offer advice on finances. I know if money were not an issue I’d go with the best. For me even going with the best I had concerns. I even called Dr. Park’s office and threatened not to go forward with the surgery if he didn’t personally call me back. I wanted to speak with the man who was going to cut into my daughters backbone and sever some of the nerves in her spinal cord. I don’t know anything about Dr. Boydston so I can’t say what I think about his work.  Here is what i can tell you about Haley. She used a walker until she was about 3.5 and then became an independent walker. She was amazed at how loose her legs felt after the surgery. Haley was seven years old when she had the surgery. She has recovered from the surgery but it’s taken her nearly 15 months to get back all the endurance she had prior to the surgery. That said she finds life much easier now and we would do it again. I do want to mention one other thing. In the last 6 months or so she has developed minor back pain. We think it’s due to her growth as it didn’t exist right after the surgery but we just don’t know for sure if it’s related to the surgery or not. That said we would still have done the surgery because things are easier for her now.

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