Acquired Spastic Equinovarus Deformity in case of my son Marc: ( in case of Marc we have also dystonia as well in his legs) .
Spastic equinovarus foot is due to spasticity and dystonia of the calf muscles (soleus, gastrocnemius and tibialis posterior), often complicated by contracture and by the weakness of peroneus longus and peroneus brevis muscles
Videos before splm/ after Splm on link:
So what is SPLM?
SDR addresses spasticity (tightness that arises because of mixed up signals between the brain and spinal cord).
PERCS and SPML address shortening of fascia/tendons.
Première étude : Dr David A. Yngve ( Texas)
His mail: firstname.lastname@example.org
2) second etude splm: https://www.researchgate.net/journal/Minimally-Invasive-Surgery-2090-1453/publication/343767239_Minimally_Invasive_SPML_Surgery_for_Children_with_Cerebral_Palsy_Program_Development/links/617bf69feef53e51e1009356/Minimally-Invasive-SPML-Surgery-for-Children-with-Cerebral-Palsy-Program-Development.pdf
R. M. Nuzzo, “SPMLs: selective percutaneous myofascial lengthening in velocity-dependant neuromuscular gamma-efferent high-gain feedback oscillation syndromes—or how I came to like the word “percs”,” Cerebral Palsy Magazine, vol. 2, no. 4, pp. 30–37, 2004.
View at: Google Scholar
4)étude de Grèce ( Dr Kanellopoulos)
Comparaison methode Ulzibat ( celle qui fait Nazarov en Espagne) et méthodes de Dr Nuzzo est mieux expliquer sur page de Dr Bernius : ( je crois en fb page tu peux choisir langue que tu veux ?)
It’s explained on dr Bernius page:
So here answer de Nuzzo: ( before operation)
So at the moment we did SPLM 4th August with dr Nuzzo (hopefully marc will never need transfer…)
Link haw Marc was walking before splm:
Hère best way to explain Splm operation is dr Nuzzo will talk I will ask my questions :
And this Dr Nuzzo after operation :
So our operation it was ok till point of wake up … after that point It was difficult 😥
Marc was crying one leg didn’t support cast it was his dystonia…. We had to cut it off even before Nuzzo arrived back …..
It was very very difficult 😥
Dr Nuzzo he did new cast ( much looser) and open cast – dystonia of Marc not support real cust on his right leg
Left leg – he has no problems….
He had bad dystonia reaction on his right leg – soring/ temperature etc…. It was torture ….. ( I imagine not all patients has it) because boy before us from Canada was absolutely ok at getting out from hospital it was us – extreme crying and pain…
Doctor Nuzzo came back for us to hospital 40 minutes later …( we had to take off cast with nurses before he come back in urgency and it helped instantly) …. Yes as soon as we cut off his cast it helped instantly my son come from crazy crying to smiling ! Honestly !
Dr Nuzzo was escorted by police to get back quickly ….
He did new cast ( pre opened) which I can took off and he explained about dystonia…
It was difficult day I can’t tell it otherwise
Hopefully we will have results
For moment marc is just resting and don’t want to walk even to toilet
He did vomited also ( all around our hotel room) this i think Anestesia reaction…
( after vomiting feels better)….
1st day after operation :
He is better ( not yet walking ) but better he is in good mood
I can see his foots are really in stright position ( yes it’s impressive !) haw position of foot’s changed
So for naw we are just waiting when he has less pain in right foot ( to bear weight)
He can stand on his left foot but not right foot yet ( this one yet a bit hotter than left one and a bit more swollen)
So we take all with patience and give some time to Marc to recover.
2 d day after operation
Marc did 5/6 steps with help of his parents both side till toilet !
Yes it takes time to ré walking …
He also can walk 10-20 meters with Alinker bike help
Upset stomach this day ( may be medications during operation?)
3d day after operation:
We visited Atlantic City it was nice but a bit tired at end
I found his right leg more swollen after much walking….( on bike Alinker) but still it’s a lot of effects for transfers/ and some steps around bass in our hotel room – not real “ walking yet “
4 th day
Not yet “independently walking “
He could walking till toilet with my help one side this morning
And with helps of father :
5th day: starting walking with helps of our hends but we can go naw to our breakfast without Alinker
First steps indépendantly in room but still he is affraid to restart walking by himself :
A lot of blue marks on foots and still pain in foots.
6 day :
Can walking a bit without holding but still bad balance and dystonia planing tricks so he stress and can lose control …
A lot of bike training but not much walking without Alinker…. (50 meters ? Before splm my son could walk independently 800 meters at least)….. so not yet at point of pre- operation level of independence – can’t go to toilet alone – can’t clean his teeth alone as before – not yet…
Dr Nuzzo said me that’s because in case of Marc it’s dystonia ( so not the same as spasticity and that’s why we saw big reaction to cast on his right leg had to cut asap just after operation and as soon as we took off cast on left leg – also dystonia reaction – left leg was teurning inside – it was heurting ) naw he is making used about all this changes – so not so much dystonic reactions as I put back his casts and bandages them……
Tomorrow we are getting his AFO
Hope it will help
I think if he had no pain and this blues he started to walking even better alredy …( but he has it may be need 2-3 weeks to pass all this swallowing and blues…)
Marc has started slowly walking with the AFOs.
He says he feels like walking on his heels. As I see it, it is a bit like walking with ski shoes. As I understood, the angle is meant to be this way so he bends more his knees and uses his hips more. But this gives him a strange posture. And he is claiming it’s “not confortable” he is walking worse with AFO than he was walking with casts is it normal?….
It’s first day with AFO may be he need to be used to them but it’s strange that in AFOs he is less confidence than in casts he had….. he can’t walking even some steps independently again in afos….
While on casts he alredy did ….
Exept that these afos is so large it was really difficult to find shoes and he can’t do any more bike ( We’ve tried the training bike, something he likes to do and he is motivated by, but the AFOS are too large for the pedals.)
8 th day – coming back to France
I was terrible traveling back to france I don’t know why but it was the worst day after surgery ( marc had spasms) I gave Valium it helped only a bit…
Marc still complains and mainly the arc of the foot and he had spams during all travel ( it was very difficult on the plain he was crying as well)
I gave Valium and paracetamol but it helped only a bit
I had to take off his AFOs ( for me it looks like it’s really related to the position of his foots in AFO) when I dance with the hills on my shooses 12 cm during all night I also has spasms and can’t were hill for sometime after … if you see what I mean ?
So I don’t know what to do?
Marc even asked me his casts back ( he was obviously better in casts than AFOs but I done have them of cause….we left them at. marc office when we took AFOs)….
Réaction after just 1 day wearing AFOs is really conserning for me … ( I understand that all of the work he has been doing of practicing walking and exercising new muscles in new ways, is equivalent to someone going to do heavy workouts at the gym everyday. his muscles can sore and may spasm. it is part of the healing process… but this is real regression again – not walking at all steaming and refuse to put afos
He is not even giving me to touch his legs! Even touching heurts….)
I live him naw to sleeping after very very difficult travel ( most difficult in my life I think…)
And I need advice:
What I have to do?
We don’t how much he is in pain exactly
He has walked day before travel quite a lot with his afos . Maybe 30/45 minutes altogether
But even in the evening I found his feet more swollen and touching his ankles hurts him more than before AFOs….
May be instead of AFO I can use his old orthopedic shooses?
I don’t know…..
10 th day after operation
Finally I got answers from dr Nuzzo and Matt ( orthopedic dr):
12 th day after operation
What is important that he is better today 48 hours without right AFO and just small use of left AFO ( only in static positions) siting/ lying etc … Obviously his foots position improved enormously
This i can see of cause
But naw I want him walking
Here before splm his position of foots
And here today:
You see it ( and yet he just restart to walk after AFOs reaction only today!)
So ….we will continue Feldenkrais will walking with ordinary boots and will see what orthopedic dr in france will say 22 August….about AFOs
18 days after splm:
20 days after splm:
So at any case his dystonia foot ( right still didn’t acsepted AFO after opening) so we stopped to use right AFO and just use left one while sitting ( watching tv or playing Xbox) and use Boots while walking : ( as dr Nuzzo advice)
some last videos of his progress : 22 and 23 days after Splm: