Comments on: What Have You Tried

By: Monika Stern

Monika Stern — Mon, 28 Nov 2011 04:19:06 +0000

I like what you guys are up too. Such intelligent work and reporting! Keep up the excellent works guys I’ve incorporated you guys to my blogroll. I think it will improve the value of my web site

By: ann121

ann121 — Sun, 14 Aug 2011 23:06:47 +0000

My son also had heel cord lengthening at the age of 12. He uses forearm crutches as well. The doctors call it discomfort; it’s not discomfort, it hurts. It’s like taking your own leg, bending it back further than it normally would be, and then casting it that way. Not all doctors use the casting method, our doctor did. With that all in mind, it was a benefit and I’m glad we did it. The most important thing to note, get at least two doctor opinions to be sure that’s what he needs. One doctor wanted to perform the surgery again but a second doctor said he did not need it and it would cause damage. If you do not have a doctor with a lot of experience who has performed this surgery hundreds of times, they can cut the tendons too loose. Your son will be too flexible and it is difficult to fix. I’m giving a realistic answer based on what I studied for my son, but I did go through with it twice and it was worth it. It will allow your son to stand straighter and take better strides. Eventually they could have back issues from their posture. Good luck

By: Jo

Jo — Sun, 14 Aug 2011 13:11:22 +0000

Hello there, It is nice to see recent post for older children and what they have tried and what works for Spastic CP. My son is 22 and by the time we found out about SDR he was to old for any of the Dr.’s to even think of trying (he was 16 at the time we tried). The Dr’s are wanting to do heal cord lengthing and we are afraid. Has anyone heard or seen of someone at his age that has had it done and what the results were. He is mobile with fore arm crutchs and his fear is that it will make things worse and he will not be able to walk. Any advise or encouragment is greatfully appreciated. I wish I had support like this when he was younger.

By: ann121

ann121 — Sun, 07 Aug 2011 15:58:20 +0000

Michael had surgery at University of Michigan. When going through the insurance company for authorization, it was a requirement as part of the approval process that the insurance company agreed to pay for Physical Therapy 5-7 days per week for 2 years – it did not fall under any part of our insurance and was an exception. The doctor submitted documentation to the insurance company as well stating they will not perform the surgery without a commitment from the insurance company. We were denied the first time and went through the appeal process and were approved. Give them any and all documentation that the surgery will not work without the necessary therapy.

Another child in our area went through the same surgery, did not follow through on the therapy because the family found it difficult to see the child in pain, and found little to no benefit. It is truly a painful operation and it was very difficult watching Michael in so much pain (including the therapy after). But eventually he was able to put on his own clothing and shoes and move better. The most important thing to remember as a mom (and what I struggled with at times) is to know it does not “fix them”, but it does improve their quality of life. Good luck. Let me know how it goes and surgery as well. A support system will be very important.

By: Lauren

Lauren — Mon, 01 Aug 2011 00:14:43 +0000

I came across your site while researching the SDR for my 2 year old daughter who has spastic quad cp.. I very grateful that families
Like yours are willing to share your experiences! It helps so much to know im not alone. We were referred to a neurosurgeon for a consult regarding this surgery. She receives therapy 6 times a week as it stands, how were you able to get daily PT after the surgery? Can they classify it as rehab or something similar so insurance will cover it? I’m very nervous about how we will afford the therapy if surgeon does in fact believe she needs the surgery..

By: ann121

ann121 — Sun, 01 May 2011 07:05:53 +0000

When we had it done I was told the latest they did it was age four, but I know people who have had it later with great success. Consult a specialist.

By: ann121

ann121 — Sun, 01 May 2011 06:48:10 +0000

It is not a complete miracle worker but if you do exactly what the doctor says there will be significant improvements. My son could actually touch his feet for the first time and learn to put on she’s. He could sit on his bottom without tipping over, etc. Huge difference in a childs life!

By: ann121

ann121 — Sun, 01 May 2011 06:32:34 +0000

Although Grand Rapids has started performing the procedure, I still recommend u of m because of their many years of experience. Why did I like them? I called to ask questions of the procedure and received a call back from the actual surgeon who spoke to me for 30 minutes. That is not a normal response and I was very impressed. I can not recall his name but he is the only at the time to perform it. There maybe more. Make a list of questions. They will give you the worse case scenarios. Even so ask them how many times have they performed the procedure, how many times have the worse case scenarious happened to their patients,etc. At the time it had never happened but because they are touching nerves in the back they need to be honest with you.
Also I had 10 surgeries performed Gillettes Childrens hospital in Minnesota. They also do rhyzotomies and I was very impressed. It’s fighting with insurance but we made it happen. Good luck!

By: Alison

Alison — Fri, 11 Feb 2011 19:54:07 +0000

Hi! I’ve been getting information on the selective dorsal rhizotmy procedure and came across your site. My daughter has moderate cp, spastic diplegia. I’m glad to hear that this can be done in Michigan, I thought we’d have to go to Ohio or Missouri to do this. Can you tell me anything else about your experience? Can you recommend a Doctor, or person to contact? Any info you can give will be greatly appreciated!

By: dhakshi

dhakshi — Sun, 05 Dec 2010 03:52:23 +0000

I have a 5y old son with Spastic CP. He had Selective Dorzal Rhizotomy 2 years back. I’m glad I took the courage to go for that surgery. He showed tremendous improvement eversince. He is totally independent. He could swim, ride bike,….His gait has to improve, we have been working thru that. He is my gift from God!!!