SPML surgery Dr. Nuzzo - toeing in
 

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

Dear Heather
so sorry you havent had any replies yet

I just wanted to welcome you and wish you all the best and I do hope that your child will begin to show improvement from the surgery

Heather,

we had the same surgery last year. My son was 3 years old that time. I'm not sure if we have the same problem though. My son used to stand on his toes all the time, and since the surgery, it stopped completely. His legs were also very stiff and it has improved a lot after surgery. He wears AFO's, without them, his walks on his inner side of his foot and it looks very bad. Andrea

My son had Perc Lengthening in 2001 with Dr. Nuzzo
 

He was walking better soon after his casts were removed.

He will never be an athelete, but he is a referee, so he is part of the game.

Hi

I inhereted the tendency to "toe in" from my mother. I also had flat feet. My ankles were flexing inward. I asked my parents for letting me go to an orthopede, but they would not. So I fixed it myself, when I was 11. I started paying attention to every step I took trying to turn my feet out a little, reasoning that I would end up straight. Since my ankles were flexing inward, I started walking on the outside rim of my feet consciously at the same time. It is also important to "roll off" the foot correctly. It worked. I am 51 and my feet are still straight. For the flat foot I started walking barefoot on the back lawn in the mornings and also wearing toe-slippers, which make you grab the slipper to not lose it with your toes. I started picking things up with my toes all the time, which was possible because indoors I was wearing the toe-slippers. The kind of slippers where there is only something over the toes, not inbetween, is actually detrimental. I have become good at running. There is nothing wrong with my feet or ankles to this day.

time to heal
 

Not being sure of the time since surgery....conservatively, there's almost no harm in having your son's physical therapist guide you toward some braces (orthoses) that will keep his feet aligned for longer after the surgery. Only you can decide how much of a problem or concern his current gait (manner of walking) is, and whether it is worth seeking some local help.

All the other replies-suggestions will likely not cause any harm, but walking in the grass may not be enough. You obviously are willing to do everything you can to benefit your son. He is blessed with caring parents.

Barbara, OT & PT

Looking for more info on Dr. Nuzzo/percutaneous release
 

Hi, Andrea:

I'm researching Dr. Nuzzo before I take my 2 year old to go see him. I was interested in your post because my daughter has tightness that causes her to toe walk on her right foot (as well as bow out to the outer side of her foot). Just wondering if the continued need for the AFO is related to the toe walking (our main concern) or the walking on the inside of the foot. Also I was wondering if you have any idea regarding the age Dr. Nuzzo does surgery for toe walking (did you try to do it any earlier than 3?)
Thanks in advance for any info you can provide.

Looking into it also
 

My almost 2 year old son isn't a candidate for some of the more serious surgeries but Dr. Nuzzo might be able to help him with his almost "locked" knee and elbow joints. Any updates from those of you who have experience with Dr. Nuzzo?

our experience with Dr. Nuzzo
 

Our 12 year old daughter had surgery with Dr. Nuzzo in oct 2010 after a friend and PT recommended him. She has CP and he did an alcohol block on her feet and a hamstring lengthening. We did not have a good experience at all. We drove 10 hours from central virginia for the operation and that could be one source of the problems. The doctor did not talk to us before or after the operation. We had to call several times just to get preop instructions. After the operation the doctor only shook my husband's hand and said it went well and he'd talk to him later.....never did. We were put into the car for the 10 hour trip home with 2 knee immobilizers, casts and only xeroxed copies of instructions with nothing verbal from the doctor at all. I called and tried to make contact with the doctor several times a week for about a month My daughter's whole foot started turning in even with the cast on. She started scissoring. We were delayed in getting her AFO's because we were told that she would not have to wear them anymore during the consult. After I read through the xeroxed post op info, I realized she had to have them right after her casts were removed!!! Thank goodness for UVA, who made an appointment for us immediately and rushed the AFO's, although it takes 4 weeks to make them. Not to give too many details, but the doctor has been totally unavailable and we were assured that his costs would be around 1500$. Imagine my panic when we received a bill for 32,000$ and a note saying we were being referred to a collection agency. we are working out a payment plan, but we are farmers and that amount is our yearly income. When I called to try to figure it all out, they said the 1500$ was "an estimate" I'm sorry, but 20 times the amount is not an estimate!! All of the problems would be okay to deal with if we had seen the dramatic results we were promised. The only reason I dwell on the other is it makes a stressful situation (your child being operated on) even more stressful...which is okay if the results are good. My daughter did have a slight improvement, but not "dramatic" as Dr. Nuzzo promised in the 5 minutes we saw him for a consult and the 30 seconds we saw him after the operation. If you would like anymore information, please contact me. I am really only doing this not for spite, but to save someone the effort if it is going to be a bad experience without great results. Thanks.





QUOTE=hirwin;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[/QUOTE]

i also had the hamstring lengthening when i was 2 years old. at first there was improvement but by the time i was 7 i needed both my hips and my knees replace. my knees blew after the lengthening because the hamstrings were lengthened to much. i also used dr. nuzzo and did not have a good experience at all. when we went back to him at the age of 5 he told me that by the time i was 12 or 13 i would be unable to walk and be in a wheelchair for the rest of my life. we needless to say did not go back to him. it is now 14 years after my first operation and i am just like a normal kid. i still have walking issues because of my cerebral palsy. but i play field hockey for my school so dr. nuzzo was wrong. i am still walking and running. when we visited dr. nuzzo we got maybe 5 minutes with him and never saw him. i know you live far away but i siggest the hospital for special surgery. they have amazing doctors and they spend time with you and talk to you. i hope your daughter gets better!

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:

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
**

SPML surgery
 

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.

SPML experience
 

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.

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