Rhizotomy Or Tendon Lengthening For 5 Year old? - Cerebral Palsy Message Board

Kristy0641 · 07-29-2009, 10:57 AM

My son Dakota is 5 and has Spastic Cerebral Palsy. He has been on baclofen since he was 6 months and has been getting botox injections every 4-6 months for the past couple years. The botox make a difference but only for about 2 weeks and the effect wears off. We went and seen my sons doctor on Monday and he said we would do no more botox we would go to surgery next, we have an option between a Rhizotomy or tendon lengthening. So i was wanting some information from anyone who has been through this. The good and the bad? I could use any info you are willing to give. I have been researching both surgeries online but would love to hear from some people who have been through it. Thanks

nwmom · 08-14-2009, 06:32 PM

Hi there. Our son had SDR when he was three, and Dr. Parks said he may need the tendon lengthening later on, too. Next year, he'll have some kind of bone restructuring surgery on his left foot to help with his pronation.
I see that you are from NC--does anyone here now do the less invasive SDR (where they only go in one vertebrae) that used to only be done in St. Louis? That type has a much quicker recovery time than the other SDR surgeries.

Kensy · 10-10-2009, 03:11 PM

I had a Rhizotomy when I was 5 years old, I am now 19 and it has changed my life for the better. I have Spastic Diplegia CP. It makes me walk a lot better, some people can't even tell I have CP. I used to walk up on my toes, but now I can walk almost completely normal. The best thing is, I don't remember any of the negatives b/c I was too little. But it was hard on my parents b/c it was painful for me. My Rhizotomy was one of the first surgeries done at the time.

Neil H · 10-14-2009, 06:33 PM

Hi Kristy. I have a daughter who is now grown up with cp. We went through many of these procedures over the years and non of them were pleasant, but tendon lengthening was one of the less invasive. The results "for us" were definitely positive. Good luck

nwmom · 10-23-2009, 06:46 PM

Kensy,
Can you tell us what things you did post-surgery that helped get you out of the habit of walking on your toes? It seems a lot of SDR patients are able to walk with their heels down post-surgery, but have trouble doing so consistently (I'm guessing this is because their pre-surgery habits are so engrained). Did you just walk less on your heels as you got older and heavier? Thanks for posting! My son is six (had SDR when he was three). He's made tons of improvements due to his surgery and is a much happier kid now, but the hardest thing for him to change on a consistent basis has been flexing his foot so that his heel comes down first (although its 80% better than pre-surgery). His gait is really serving him well vs. pre-surgery...I'm just curious as to why this one thing seems to be so hard for so many SDR patients who have the flexibility to change their gait. Do you have any opinion on this?
nwmom
nwmom