NeuroTalk Support Groups - SPML surgery Dr. Nuzzo

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- - SPML surgery Dr. Nuzzo - toeing in (https://www.neurotalk.org/cerebral-palsy/18048-spml-surgery-dr-nuzzo-toeing.html)

We did the SPML just one month ago

hi Hirwin, wedid the Spml just a month ago the resultis amazing. there is no track of spasticity in his legs now, though they are weaker. the reason for this weakness is thwt my son used to walk on his tone in almost all his legs mucles now after the disadpearing of the tone he needs to learn to walk on his own strengh of muscles.he is improving much faster than before even faster than the time he was under botox.the proceddure itself is nothingof a hurtful kind.the casts are annoying of course but worth going trough in my openion for sure.please be aware that I did this despite all thedoctors herebeing agaist the Spml. I talked to 1 parent who did this and sow her son,and had some info from others here in Canada who went through procedure succesfuly.My son is 3 and hasn't started walking yet but with the improvement that I see,now I am more optimistic.

:winky:

Quote:

Originally Posted by hirwin (Post 90608)

Hello! My son was born at 25 wks. and developed PVL which led to him having mild spastic diplegia cp. He is 9 yrs. old now and about a month ago we had surgery w/ Dr. Roy Nuzzo of Summit, NJ. He is world renown for his amazing procedures on children w/ CP. We were wondering if there was anyone else on this board who has gone to him or might give us some opinions on what to expect from the surgery. He had muscle lengthenings in his heel chords and calf muscles and alcohol blocks on his hamstrings. Dr. Nuzzo doesn't do it the traditional way though. He makes small pinpoint incisions behind the knee and calf muscle and tears the muscles istead of cutting it. The main reason we did the surgery was to help my son's severe toeing in. Right out of the surgery he was walking w/ his toes straight as an arrow, but the more he walks and especially now that he got his casts off last Fri. he has started turning his feet in again. Now more the left, which wasn't bad before surgery. The right was the worst. We always thought his toeing in was a result of hip problems, but Dr. Nuzzo said he didn't have to do anything w/ his hips that it was all due to spasticity in his calf muscles and ankles. Has anyone else had this surgery or seen dr. Nuzzo? Will the toeing in get better? I'm hoping we didn't go across the US for nothing! Another parent I've been talking w/ said her son gradually got better, but I guess I'm like everyone, I want results NOW!! :-) Thanks in advance! Heather

SPML texas, Galveston

in Galveston I find a doctor Ingvy how lear all the tecnique from Doctor Nuzzo, does somebody have a feedback of this doctor, he want to operate my son in 4 months then he will be 2 years, he have physical therapy untill he born and know he is wearong AFO's but he don't walk yet. He have a mild spasticity and abductors tendons streching.
Please let me know if you hear of the Doctor Ingvy, from GAlveston.
Thanks
**

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.

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.

Quote:

Originally Posted by rayna1 (Post 862708)

I have heard of Dr. Nuzzo and have heard many reports of his wondrous results. I visited his website, and maybe it's because I am a writer that I am very sensitive to misuse of language and hyperbole, but I was totally unimpressed.

The people who use this doctor often seem to sound like cult followers, I'm afraid. We decided to follow the advice of a traditional orthopedic surgeon, and my 10 year old daughter just had de-rotational osteotomies of the femur and tibia on both legs. Her toeing in was drastic enough to cause her to fall and to put pressure on her hips.

Since we are only a few weeks post operation, I cannot vouch for the success yet, but I feel comfortable with our decision. We only opted for surgery after many years of therapy--both alternative and traditional--hydrotherapy, hippo therapy, yoga, therasuit training, theratogs, etc, etc.

I wish things were as simple as Dr. Nuzzo claims, and I am certainly glad people have benefited from his methods, but they are not for everyone.

Yael