Hello...

It's been a long time since I've come to this site. I used to frequent the old site...got really, really busy with all the kids and decided it was time to come back!! It was tough finding my way here...lots of google and yahoo searches.

Anyways, I wanted to get some advice on hip migration in spastic CP. A little history...

Alyssa was born at 32.5 weeks (An identical twin. Her twin is typical.) She has spastic diplegia. She is now five years old. We tried botox last year, but the effects were not very long-lasting (only about a month.) So the doctors don't want to try again.

Hip x-rays revealed her hips were migrating. I forgot the range we were told in April but one side was about 18 percent and the other side about 25 percent???? The doctor mentioned back in April that he thought she needed the muscle lengthening surgery surgery but that it wasn't an emergency...just a matter of time...better sooner than later. Well, we put it off because it didn't seem like we had to do it right way. It was actually kind of a shock because we've never been told that might be a possibility.

We go back to the doctor tomorrow with another set of x-rays I had taken today, which is five months after the last set. I have been researching this surgery and also the selective dorsal rhizotomy. I read that if we were interested in the selective dorsal rhizotomy, it was best to go into the surgery having had NO orthopedic surgeries, that we would have a better result. So I feel like we need to decide if we are going to go through with the lengthening surgery or hold off and look into the rhizotomy surgery more.

Does anyone have any advice? Has anyone been in this situation? How bad is the lengthening surgery? Any good results from the rhizotomy?

My feedback from the physical therapist is that rhizotomy is such a major, permanent surgery. While I know it is....she isn't faced with this situation. She goes home to her typical children at the end of the day.

HELP!

Thanks,
Jodi

P.S. Does anyone go to the CP clinic at UCLA?

My daughter had the adductor releases done when she was 3. Her hips were not out, but they were going to be soon if we didn't do it. Her left was more involved with about an inch long scar and her right has one only about a quart of an inch long. She had her adductors released, hamstrings lengthened and heelcords lengthened. She was in a cast for about 6 weeks which was NOT fun. But still small enough to lift in it. They dont usually do this surgery on children that young but we were "special" ha ha. And will probably have to repeat it in a few years. Back then they said they usually waited til they were around 10 to do it.

I know Paul from Austrailia has some insight on this from the other side. Im really no help at all with the Rhizotomy surgery. Im sure someone around here can be of more help to you. But thats our experience.

Good luck.

Carrie.

I have no advise either on the Rhizotomy. However, I do know that after that surgery, the physical therapy is VERY instense.....

My Megs had her 1st adductor release on her left hip when she was 14 mos old. She was in a spica cast for 6 weeks. It was not completely out of socket either. A few years later she had the right hip done, same thing, long leg casts with bar in between for 6 weeks. For Megan it was a very minimal surgery, very little pain. Had the usual discomfort any of us would have in a cast. Her hips have been ROCK solid ever since. She has had no further hip issues. Good luck in your search. If you ever have any questions feel free to ask.
Tracy

My son, spastic quad, had severe leg scissoring and we opted for the rhizotomy prior to any lengthenings. My understanding is the rhizotomy works wonders for many children, but my son was not one of them. Apparently he had more dystonia than spasticity and so the rhizotomy did not help. He was 3 when he had the rhizotomy, and less than 2 years later, his hips were fully dislocated. The rhizotomy was tough, but the hip surgery was even worse. He is now 7 and has had his adductors lengthened twice, and hamstrings and gastrocs each done once. The scissoring is still there, but the lengthenings have helped. In comparison to the other two surgeries, the lengthening was not as difficult on him, although the casting wasn't any picnic either. My suggestion would be as you continue to research the rhizotomy, be very selective as far as a surgeon's qualifications to ascertain how helpful the rhizotomy would be for you daughter. I know that it really helps a lot of children and I would guess my son was an exception.
Becky

Of all my surgeries the lengthenings have been the easiest. The only thing for me is I've had significant and lasting weakness afterward. Especially after I had my hamstrings done which was 7.5 years ago. I never regained the strength I had prior to surgery, but I can straighten my legs so that's a plus. I wish I could give you some insight on SDR, but I've never had it done. In hindsight I think I would have liked to try it instead of all the ortho surgeries I've had.

Drew had SDR 13 years ago when he was 3. It did wonders for him. And yes it is permanent but thats in a good way. It's a tough road of recovery - intensive therapy for a full year but it;s well worth it.

Way all your options as prior procedures can inhibit your candidacy for the SDR.

Best wishes
Jennifer

My two boys have had multiple lengthening surgeries (5). They have had the gastrocs and the hamstrings. I had asked my physiatrist about the SDR many years ago and she said that for mildly involved kids with spastic diplegia that it often is of less benefit. The reason she gave, was that they actually use their spasticity as a way to compensate. I always wanted to try it and see if we could achieve near normalcy. I called Dr. Parks in St. Louis and they were very encouraging and thought that we should make an appointment, but I was scared of the permanence part. I guess I'm still waiting for the miracle treatment out there. These are very tough decisions that your PT and her "typical" children will never have to make. I'd say to go with your gut after you get all of the info you can. My issue with the SDR literature is that they seem to only tell you about the really good outcomes. I'm sure that there are some "medium" outcomes as well. It might be worth it to get some benefit even if it's not perfect. As for the lengthening and weakness, I think that's true and I asked the ortho that did our lengthenings about weakness and he got pretty mad at me. He said it's true that the muscle will be weaker, but what good is a strong muscle with no range of motion. I guess that's a point, do you agree with that point Katherine?

Let us know what you decide...
Michelle