L’association Ma Rééducation Collective (MARC) est née de la volonté de Mme SERIGNY de donner aux enfants souffrants de paralysie cérébrale, comme son fils unique Marc, les outils techniques et scientifiques leur permettant de réussir au mieux leur rééducation.
Celle-ci est essentielle à ces enfants cérébro lésés afin qu’ils puissent gagner suffisamment d’autonomie pour être indépendant à l’âge adulte.
Elle a constaté qu’il y a une demande importante pour des stages intensifs en voyant tous les parents partirent à l’étranger là où des offres existent.
Cette association a pour objectifs de :
⦁ Soutenir la rééducation d’enfants atteints de paralysie cérébrale de niveau GMFCS ( Gross Motor Function Classification System * ) niveau 1 et 2 , freinés dans leurs apprentissages de la motricité et dans leur développement.
⦁ Partager l’expérience, les connaissances théoriques des différentes therapies et nouveautés technologiques qui se développent au niveau mondial pour les enfants atteints de paralysie cérébrales
⦁ Promouvoir les solutions ayant fait leurs preuves dans les pays étrangers ou auprès des familles.
⦁ Pérenniser l’action en participant financièrement à la formation de thérapeutes aux méthodes de rééducation neuro-motrice existantes en France, ainsi que la promotion des thérapies existantes dans d’autres pays
⦁ Par ailleurs l’association inscrit son projet dans une dimension d’intérêt général avec une ouverture au public international, notamment des plus fragiles, en préservant à ses activités un caractère non lucratif, laïque et apolitique. En toutes circonstances, l’association garantit un fonctionnement démocratique et transparent et préserve le caractère désintéressé de sa gestion.
Finally we have one orthopedic doctor in france who started to do SPML !
I post also hère in French :
Bonjour les parents juste je voulais vous dire que enfin il y a 1 médecin en france 🇫🇷 qui a commencé faire SPML ( opération orthopédique):
J’espère quelqu’en trouvera cet information utile :
On a rencontré médecin à Nice dr GHOUILEM en mai à Nice
qui justement a commencé opération SPML en france!
Cet opération nous – on a fait à Marc l’été dernier à usa ( C’est un seule enfant en france a ma connaissance qui était opéré par dr Nuzzo – et c’est lui qui a développé cet opération et pratiquer cet opération à usa 30 ans et il va bientôt partir à la retraite…) dr GHOUILEM est très ouvert esprits et était très content de rencontrer Marc .
Nous ont a fait SPML à Marc ete dernière à usa avec Dr Nuzzo : https://www.instagram.com/reel/Cq3y9z7NbZ6/?igshid=YmMyMTA2M2Y=
Qu’est ce que c’est SPML?
Un traitement chirurgical peu invasif pour les enfants atteints d’infirmité motrice cérébrale
Il s’agit d’une intervention chirurgicale réalisée sous anesthésie générale, au cours de laquelle le chirurgien allonge les muscles affectés par des trous pratiqués sur la peau et sur fascias!!! ( muscles pas coupé!)
Cette intervention ne nécessite pas de séjour à l’hôpital et le patient reprend rapidement sa thérapie et ses activités quotidiennes.
Méthode splm combinée à de l’éthanol Block
L’injection périneurale d’éthanol (« bloc d’alcool ») peut renforcer l’effet du SPML chez certains patients présentant un tonus accru et aussi pour enfants avec dystonia ( comme Marc).
Les 5 chirurgiens qui pratiquent cette Méthode combinée à de l ethanol block sont
– Dr Nuzzo inventeur de splm New Jersey
– Dr Yngve texas formé par nuzzo
– Dr Kanellipoulois formé par nuzzo (Grèce)
– Dr Bernius qui a également passé du temps avec nuzzo ( Allemagne)
Et Dr Price ( New York) – moi j’ai pas communiquer avec lui….
Dr David A. Yngve ( Texas) – contact :
Dr Nuzzo New Jersey ( mais il doit partir à la retraite …. Que lui il retardé mais sa femme veut qu’il parte 😂 il a plus 70 ans mais c’est lui qui a développé SPML) ….
“Developed by RM Nuzzo, SPML differs from other orthopedic surgeries in its aims and procedures “
Contact Nuzzo :
dr Kanellopoulos Grèce – contact:
Et Dr Bernius moi j’ai pas de mail j’ai communiquer via fb messanger
4 mai: on a rencontré un médecin chirurgien orthopédique à Nice Dr GHOUILEM qui s’intéresse de près à la Spml que le Dr Bernius a reçu cette semaine à Munich. Il veut amener la Spml en France. Il prévois aussi discuter avec Dr Kanellopoulos et en contact par mails avec Dr Yngve et Dr Nuzzo.
Nous avons échangé / bien discuté ( il m’a demandé si j’étais de métier 😂)….il a l’air très ouvert , que ça fait du bien de voir de tels médecins !! Avec qui on peut partager 🙂
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
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.
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
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.)
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
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:
I am sorry I am brain injured child mum so i am scepical and veru critical… ok? So this is just my thoughts about Neuralink presentation:
1)Cortical only level for naw ( they don’t go yet deeper)?
2)Elon Musk Neuralink haw much he gains 2020?
3) I am sorry that I am so critical but I am firsthand want to see proofs that it’s works ? To put in head of healthy pigs don’t prove anything to me ?
Not into paralyzed pigs ?!
4) Honestly he was talking about deep brain stimulation ( at the beginning) I personally know 3 children’s – the inventor of DBS is french neurochirurgien -as I was told – (professeur Philippe COUBES ? )I met him – so in 3 children’s I know which had sdb by him – it’s in fact don’t work 2-3 years – after still searching level of stimulation neded ….
I don’t know even one person for whom it’s works DBS? there’s re a lot published studies and they are sayin it’s works…where they 150000 persons for who un it worked I am searching them for 2 years! ? Any testimonials?
they are giving technical briefings to bring in the best talent to bring this device to every person who needs it (great, but of course CEO Elon made $ 30,000 billion this year)?
Our brain is like an electrical network, and when it is damaged, it emits weak signals (but can electronics be compared to biology?) Neural communication amplifies weak signals (and much more in terms of reading and writing to the brain) and in the distant future will the tertiary level of the brain’s AI to do what the neural connection cannot do. Is this the largest technological and medical development since the 1800s. ????? I am not sure about this ….
Have they already got FDA approval for a breakthrough device? Is it money or real progress? An artificially implanted chip? I have a lot of questions and I am very careful about this …
All this is PR and money making? Better to promise to send people to Mars. It is normal to collect money from dreamers, but not from the sick.
Yes. Work is underway on impulse-controlled prostheses. And if you manage to decorate the signals, then you can mentally control some auxiliary devices. It is a well-known misconception that we can surpass our creator. It is enough to look at the medieval paintings of how they tried to make a man with the help of springs and gears.
They do not yet know how to translate the chemistry of the brain and thinking into a conscious binary code. While they can train a person to strain something and relax something simple. For example, take a glass of prostheses controlled by a brain impulse.
So it’s gives realistic perspective….
Also : « « Former employees told Stat News that the company was chaotic, and that researchers were under intense pressure to rush through projects. Scientists were sometimes given weeks to complete projects that should take months, for example. “They are building a medical device and a surgical approach to implant that medical device, and they’re approaching it with the use of a tech company — move fast and break things,” one employee said. »
« The announcement of the technology was based on two white papers published in bioRxiv, reports written by NeuraLink scientists and not peer-reviewed. In both published white papers, no attempt has been made to use the recorded neuronal data for the purposes of a BCI, and no attempts to simulate neurons through NeuraLink have been reported.
It’s fairly likely the company has achieved more than is reported in the white papers, the nature of scientific research being that breakthroughs are sometimes made years before they can be published. »
« Neuralink’s microscopically slender electrodes are designed to provide longer-term recording than current electrodes and produce less tissue damage, but it’s still not clear how this will stand up over time. In the first study cited, recordings were made from one rat implanted with the electrodes for 60 days, with the implants falling off prematurely in the other three rats studied.
By comparison, the Utah array has reported longevity of six to nine years when implanted into a primate brain. »
You see I eventually don’t use any my own words ….
Just for anybody’s who wants to comment on my blog : I am not confirming ANY comments on it I had too much spam messages and I don’t have time to see all comments which is good or spam … so I delate every day ALL COMMENTS send me
Svpl toutes mes contacts qui utilisent Hyperbare et qui parle français répondre cet questionnaire ( en espérant que ça va donner ses résultats pour promouvoir loi sur Hyperbare à Canada !)
C’est le temps de faire valoir notre expérience, n’hésitez pas à participer et à partager 🙂
L’Institut national d’excellence en santé et en services sociaux (INESSS) s’est vu confier le mandat d’évaluer la valeur thérapeutique de l’oxygénothérapie hyperbare dans la prise en charge de la paralysie cérébrale.
Pour ce projet, l’INESSS est à la recherche de parents et de proches aidants d’enfants atteints de la paralysie cérébrale et de jeunes adultes avec la paralysie cérébrale de 18 à 25 ans afin de mieux comprendre l’expérience de soins, leurs besoins non comblés et leur perspective face à l’oxygénothérapie hyperbare.
Honestly I don’t personally liked TheraSuit we tried long time ago in Spain for Marc ( he hated that it was tearing him all diferent ways and didn’t supported it more than 3 minutes ) ….may be I didn’t tried too long enough but it was all as our experience with suits for naw….
I never tried yet for my son Marc because he has electrical suplimental pathways in his heart (wpw syndrome) I wasn’t convinced that it was safe to try it … next September 2018 I will go in Italy to check his WPW and if it’s ok after 5th operation and we get Professor Pappone agrément so may be I will try it….this winter
So I can give just informations about I can’t testimonials about haw it works ok;)?
« The Mollii Suit is a new assistive device developed by Inerventions, a Swedish company, that can “relax spastic, tense, and aching muscles.” The company was started by Mollii inventor Fredrik Lundqvist in 2009. According to their website, Mollii is currently being used by people with cerebral palsy, stroke, spinal cord injury, acquired brain damage, and neurodegenerative conditions. Inerventions mission is, “creating opportunities for active movement and functional improvements, and providing everybody with the chance to live a dignified and active life.
How does it work?
The suit has 58 electrodes which can be combined in various ways. Mollii has a control unit which is individually programmed for each user. The person prescribing Mollii uses a computer program to adapt the active electrodes and the intensity (which muscles are to be activated by means of current). The settings are then saved in the Mollii control unit, making it simple for the device to be used at home.
Mollii uses low level electric current to produce basic tension in the musculature. The current stimulates the antagonist to the spastic muscle. If, for example, the biceps is spastic, the triceps is stimulated which in turn makes the biceps relax. Relaxing the muscle enables active movement and a gradual improvement in function. The physiological mechanism is called reciprocal inhibition. »