SDR selective dorsal rhizotomy & choices

Phew! Kids are in bed and its late.. just a "brief" description on some of the medical choices we have gone through with our son. At 4 years old, my son had the SDR procedure done to reduce his spasticity caused by cerebral palsy. He is doing nicely.

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People & Blogs

Tags:

• ilvsockmonkeys
• CP
• cerebral
• palsy
• disability
• choices
• parenting

[mikemax66]

Thank you for spreading the word about SDR. I'm a 40 year old with spastic diplegic CP. Dr Park performed the procedure, I am now 7 weeks post op and will say that I wish I could have had this done when I was young. It has loosened my legs and thighs and I have been doing PT to rebuild strength. I believe that if this would have been available when I was little I probably would not have the deformity in my lower right leg. I believe the sooner one has SDR the better off they will be.

[ilvsockmonkeys]

I hope you are continuing to recover. :) I had never heard of an SDR or Dr Park if it were not for other parents from and internet group CPParents. It sounds so scary I remember wanting to know as much as possible. Ryan is now 11 and I still think it helped him greatly and he had it at 4. I often wonder where he would be if he had it earlier.

[JSHANAK]

This video just brings tears to my eyes because it relates very much to the situation I'm in now. Nearly everyone I talk to has a negative view of a rhizotomy. I can't help but to worry about my son needing more orthopedic/muscular surgeries if an SDR isn't done. It's so hard to know what is best and to fight just to have a decent evaluation done.

[ilvsockmonkeys]

@Ilonka111 Sorry to just get back on here after a while. I think that for an older person they might reserve the surgery mainly for caregiving... or that is the reason that I've been told as a reason. Say for example someone is so spastic its hard for them to get dressed or in a chair. But literally its been years since I've spoken with a doctor about how an adult could have the surgery. Sorry to not be much help. :(

[ilvsockmonkeys]

@Bladekaguya Sorry to just see this. I havent logged on in such a long time. I hope your nephew is doing very well post surgery :)

[ilvsockmonkeys]

@sarah18065 My son is now 13 and he sounds medically similar to you. At 10 he had his first bone surgery, the derotation and then foot surgery.  He had a lengthening done at the same time too. The SDR saved him from all the endless Botox treatments I will guess he would have had over the years. Now at 14, we are looking at the knee surgery, a small plate and pins to pull his knee cap down on his left leg. I worry about his spine down the road honestly, but he is still good now.

[sarah18065]

@ilvsockmonkeys I had DSR when I was 5 I 'm so glad I was able to have the procedure it increased my mobilty and decreased my spasticity, but I've had to have other surgeries. As many of you know spasticity can increase over time or w/ age. I'm now in my early 20's I've had bilateral hamstring/ cord releases, femure ostiotimies, knee surgery and 2 spinal fusions. All of this still had to be done even though the doctor's consider my spastic diplegia form of cp to be mild. SDR's not a "cure all"

[Ilonka111]

My husband has HSP and would really benefit off SDR but was told he is to old, now 48, Is there any other doctor but DR. Park who performs this surgery on adults. ????

[stephanieadlerm]

I was one of the first people to ever have this surgery. I was young when I had it but old enough to remember what I went through. I wonder sometimes if it was the right thing to do but I know that it was the right thing to do. I had an amazing doctor. With the surgery I was able to do so much. I got to participate in sport and dance.  None of which I would have been able to do without the SDR. I hope your son is doing well.

[thefavilles]

We've been through all of this with our son who is 5 now. He had SDR June 2007 after doing all you've done with Ryan. The botox stopped working, casting was horrible, afo's etc. We went to Dr. Park and wished we ever doubted doing this. He's doing great, but still has issues. Now in Kindergarten, we're scared to death of public school therapists! Check out his vids on our page.