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Old 07-29-2009, 09:57 AM   #1
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Kristy0641 HB User
Question Rhizotomy Or Tendon Lengthening For 5 Year old?

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

 
Old 08-14-2009, 05:32 PM   #2
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nwmom HB User
Re: Rhizotomy Or Tendon Lengthening For 5 Year old?

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.

 
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Old 10-10-2009, 02:11 PM   #3
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Kensy HB User
Re: Rhizotomy Or Tendon Lengthening For 5 Year old?

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.

 
Old 10-14-2009, 05:33 PM   #4
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Neil H HB User
Re: Rhizotomy Or Tendon Lengthening For 5 Year old?

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

 
Old 10-23-2009, 05:46 PM   #5
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nwmom HB User
Re: Rhizotomy Or Tendon Lengthening For 5 Year old?

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

 
Old 11-13-2009, 09:09 PM   #6
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Neil H HB User
Re: Rhizotomy Or Tendon Lengthening For 5 Year old?

Over the years, we too had difficulty establishing a heal strike walking gait and tried various methods of intervention. Firstly from aged 3 or 4 we went through the process of AFO'S or ankle foot orthopedics which helped with the stretching of the calf muscles. These can be made with an open heal which helps the child identify the heal strike sensation. We also had a period of serial plastering which was pretty horrible as we live in a hot climate and once the plasters were in place it was very hot and unpleasant for my daughter. There was some considerable success from these intervention methods; best was the AFO'S because they were removable and easy to wash etc being made from hard plastics. She wore these at school with oversized shoes which seemed to be very successful. As my daughter grew we also had a fairly intensive exercise and physio regime which is hard on the parents and the child. Eventually as a teenager: at 14 or 15, we had various surgical procedures carried out including tendon lengthening of the rectus femoris muscles, hamstrings and inner adductors which straightened out her gait and improved things noticeably. We also had derotational osteotomies done on both femors due to torsional twisting during growth with tight tendons etc. This sounds; and was a major decision for us as parents and my daughter as the recipient. The results today are nothing short of miraculous. My daughter walks with a straight gait and for all intensive purposes is the same as everone else. She does tire easily and does have an arched back, as tone does tend to shunt to another area as each correction is done. I would not change any of our decisions if I had to do it all again, but each individual is different and CP is different in each case. We consulted many doctors and sort second and third opinions before making our choices. I hope this story helps you in some way. I do think tendon lengthening is definitely a step in the right direction and today's specialist doctors are well informed and networked. Wishing you well. Neil

 
Old 01-28-2010, 09:44 AM   #7
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skycop4me HB User
Re: Rhizotomy Or Tendon Lengthening For 5 Year old?

Personally, I am against either one in a 5 year old. My daughter is now 24. We did a tendon release in the back of her knees and groin area when she was 10, botox in her wrist when she was 15 or 16. She has had better success with xanaflex for her spasticity than she did with baclofen. The more you cut, the more scar tissue there is to deal with later. I don't like Rhizotomies because it essentially fries the nerves.

 
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