Hi,
My daughter was also born at 26 weeks and had PVL following a strep B infection resulting in spastic diplegia. She had SPML surgery 2 and 1/2 years ago with Dr. Nuzzo (she is now 15). The surgery was a success in that it improved her muscle contractures and reduced her croutchy standing and gait. However, new problems developed following the surgery. She now sways a lot more from side to side when she is walking - we think she was using the tightness in her hip flexor muscles for stability. Now that they are not as tight, she has a harder time standing on each leg (stability on each leg is somewhat reduced because she's not "fixing" on that leg when taking a step with the other.) Overall, we are glad we did the surgery. She is not as fatigued from walking as she used to be - and her legs look better - but her walk "looks" a little worse because of the swaying she now has. In hindsight, we wish Dr. Nuzzo had spent more time with her, understanding her body, before the surgery. What he's doing, and how he's doing it, makes a lot of sense, but it seems like her issues were not as cut and dry as he thought. While he seemed very knowledgable, the hospital and staff were a nightmare. If you have any more questions about our experience, I'd be more than happy to share with you.
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Originally Posted by rayna1
Hello,
I only recently learned about SPML surgery within in the last week and have been busy trying to gather as much information as possible. I have tried to do scientific literature searches on the procedure but there are very few published studies.
My son was born at 26 weeks and will be 3 yrs. in late April. He was diagnosed with spastic diplegia as well as being profoundly deaf (cochlear implants now). He has had 2 rounds of botox (bilateral hamstrings & gastrocs), which does help, but he is still unable to stand independently with his AFOs, walk with a walker,.... I have a couple of questions and was hoping some parents/health care providers might be able to provide some guidance:
1. Are Dr. Nuzzo & Yngve the only options for the procedure?
2. Can anyone provide feedback on Dr. Yngve (although Dr. Nuzzo is closer)
3. Does anyone in Canada do the procedure (at any of the children's hospitals or elsewhere)?
4. What is the approx. cost for a Canadian to get the surgery in the US?
5. Is there any funding for Canadians?
6. What are the long-term outcomes from the surgery (i.e. ability to walk, walking with/without AFOs and other assistive devices, future reversal of the procedure, going back to tendon releases/botox,...).
Any answers/info would be greatly appreciated.
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