My son has had 5 heart operations ( it’s ablation of his WPW) wolff Parkinson’s wight syndrome. It’s a mainstream operation but in France 2 doctors couldn’t do this operation successfully -they attempted 3 operations here in France.
I had to find best doctor in world ( in Italy) he is professor and researcher in this domain : Rythmologie and his heart hospital has other techniques- 5 catheters ablation, named
« Pappone ablation technique » so he was finally successful!
I amvery grateful to dr Pappone ( Italy for sucsessful ablation of WPW)
I have to say by French mainstream doctors wasn’t very helpful in order to find him….
And Marc had 4th ablation with dr Pappone 14 March 2018. It was good ablation but still we foud he has some ( very small rest of wpw in May so dr Pappone made 21 May again ablation and this 5th ablation finally fucsessful … we checked his ekg 14 September 2018 it’s perfect … )
He is cured for life from his heat syndrome!!!!!
We are very happy 😃
Happpy ( it was very long battle and only because of my stubborn character we could find doctor who cure him for his heart syndrome).
Don’t be affraid to search always for doctors we need best in the world.
It must be said we had not very good doctors for his previous ablations….in France…..
1st dr who ablated 2 times my son in Grenoble said :that his Kent pathaways was so baldly located that he need to cut his heart in order to ablated him complitely ( Pappone didn’t cut his heart ❤️)
Second dr in paris said that radiofricwancy was not enoth profound ( his wpw was more profound) so that’s why his 3d ablation didin’t work ( Pappone use radiofricwancy also for his ablation ❤️ so it becomes less profound in 5 months or just doctors before wasn’t so good?)
Pappone said I will ablate Him successfully .
He did ! Ont one thing still make me angry against our French medical system : as dr Pappone said that his anoxic injury could be avoided …. absolutely…..if we had different system for cardiac tests for all children’s….. it’s making me said.
The 37 patients who underwent ablation were followed for a median of 27 months (range, 9 to 60). Two patients had an arrhythmic event, one at 9 months and the other at 26 months. Repeated electrophysiological testing revealed an atrioventricular-node reentrant tachycardia in both patients, who underwent successful slow-pathway ablation. »
« Control group ( without ablation)
Control Group
The 35 controls were followed for a median of 21 months (range, 8 to 60). All patients continued to exhibit ventricular preexcitation during follow-up. After a median follow-up of 15 months (range, 8 to 53), 21 patients (60 percent) had had arrhythmic events. The arrhythmic event was supraventricular tachycardia in 15 patients (leading to severe presyncope in 1 patient), atrial fibrillation in 5 patients (1 with syncope and 3 with presyncope), and ventricular fibrillation as the presenting symptom in 1 patient (a 22-year-old man). This man became unconscious during jogging. In the emergency department, he was found to be in cardiac arrest due to ventricular fibrillation that was successfully cardioverted only after six shocks of up to 300 J. Base-line electrophysiological testing had induced an atrioventricular reciprocating tachycardia triggering atrial fibrillation; the shortest preexcited RR interval had been 200 msec. Multiple septal accessory pathways were found on both the right and the left sides. »
60% had arythmia events ! From control group
60%!!!!!
So why asymptomatic Wpw considered not dangerous ?
So why every child can’t have EKG test at birth ? In order to find out if child has asymptomatic Wpw ?
You know my son never used normal ways in his heart before operations ( he was using Only Kent ways) and it was visible on his first ekg…. so why his first ekg we had only AFTER his cardiac arrest ? Why not just routine check for just born child?
I can’t change the past all what I can: to tell others parents.
It’s not true that drugs against your tachycardia for Wpw without side effects :
They are! They makes your tired they kill your intestinal flora….
We did Gyrostim and neurofeedback first time for Marc end of April 2017 in neuro plasticity brain center in France: ( one week) it’s like center in Orlando USA parents know what I talking about but in france and chiper (all therapies in USA I don’t know why but much more expensive in USA….)
In short : Vibramoov ™ uses Functional Proprioceptive Stimulations (SPF) to activate the nervous system with sensory information identical to that of natural walking.
These stimulations keep the sensory-motor interactions of anyone with locomotor disorders active and stimulate their neuroplasticity.
Experiments with vibramoov tests was developed by
Pr J-P Roll and now
by Prof. Frederic Albert, who was a student of Pr Roll
« Neurorehabilitation through Functional Proprioceptive Stimulations:
The Vibramoov system applies Functional Proprioceptive Stimulation to preserve the sensory and motor functions of the patient even when movement is impossible. A number of electromechanical actuators are placed as shown in the adjacent images. Programmed sequences stimulate the nervous system with sensory information which is identical to that which occurs in normal movement. This afferent information can induce motor responses corresponding to the sensation that the patient experiences. The patient has the sensation and experience of movement even at the earliest stage of recovery. It is safe and effective when applied early in rehabilitation.
Research findings suggest that the sensory feedback induced by Vibramoov and the associated perception of movement may counteract disuse-induced cortical plastic changes. This happens due to the recruitment of a large part of the cortical network which is normally used during the actual performance of a movement. This research supports the possibility of guiding cortical plasticity with proprioceptive augmented feedback.
Many acquired or congenital neurological impairments (such as stroke, incomplete spinal cord injury, traumatic brain injury, cerebral palsy, MS and Parkinson’s disease) can dramatically affect our ability to move at will and they disturb our sense of « connection » to and awareness of our limbs. Awareness of limb position (proprioception) is impaired.
One of the main challenges of neurorehabilitation is to preserve or re-establish the coordination between motricity (active movement) and the related neurosensory information.
Vibramoov offers a unique neurorehabilitation therapy by maintaining the functional interaction between movement and proprioception throughout the recovery process.
Vibramoov enhances both the rate and potential for recovery as the system may be used safely at the earliest stages of recovery; even earlier than typical robotic interventions.
Early intervention is very important to maximise the rate and extent of recovery as prolonged immobility brings about secondary effects that can be very hard to overcome when therapy is delayed. »
En août 2018 en plus des Gyrostim et autres programmes neroplasticity d’année dernière on a essayé nouvel système reheducation française Vibromoov!
Ce qui était intéressant, c’est que Marc faisant vibramoov aujourd’hui (sans bouger les jambes) avait des sentiments à marcher (je lui ai demandé ce qu’il ressentait et il a dit: je marche avec des petits pas) ….
Vibromoov est un nouveau système de rééducation innovant.
Centre que nous faisons Gyrostim est l’un des 4 centres en France à faire de la rééducation avec cet système.
En bref: Vibramoov ™ utilise des stimulations proprioceptives fonctionnelles (FPS) pour activer le système nerveux avec des informations sensorielles identiques à celles de la marche naturelle.
Ces stimulations maintiennent actives les interactions sensori-motrices de toute personne présentant des troubles locomoteurs et stimulent leur neuroplasticité.
Les expérimentations ayant procédés aux tests du vibramoov sont celles développées par le Pr J-P Roll et maintenant par le Pr Frederic Albert, qui a été étudiant du Pr Roll
« Technoconcept, lauréat du trophée Innovation et médecine.
Technoconcept : la révolution médicale mondiale
L’histoire de Technoconcept, c’est l’histoire d’une révolution médicale, baptisée « Vibramoov ». Après 30 ans de recherches scientifiques et cliniques, la société installée à Mane est parvenue à mettre au point une technologie révolutionnaire dans le monde de la rééducation. Le « Vibramoov » permet en effet, à partir de séquences de vibrations, de stimuler le système nerveux. Il s’agit, ni plus ni moins, d’envoyer au cerveau des informations liées au mouvement alors que le corps n’est pas en capacité de bouger !
« Sans stimulation, le cerveau oublie très vite et se met à dérailler », expliquent Frédéric Albert et Nicolas Plumier, respectivement manager R&D et manager marketing. « Plus le corps reste immobile longtemps, plus la rééducation est longue et difficile. Alors imaginez une personne victime d’un AVC, avant qu’elle puisse se remettre debout, des mois se seront écoulés Avec le Vibramoov, son cerveau n’aura jamais cessé de monter des escaliers ou de courir. On maintient les activités cérébrales et on peut agir très tôt dans le parcours de soins ».
Officiellement présenté en décembre dernier, le Vibramoov de Technoconcept débute sa phase de commercialisation. Et, comme l’on pouvait s’y attendre, l’accueil est à l’image du produit : exceptionnel. Des premières commandes ont déjà été enregistrées en France et les premiers centres seront équipés dans le courant du mois de juillet ; mais l’intérêt médical dépasse largement nos frontières… De l’Italie à l’Allemagne en passant par la Pologne, la République Tchèque ou le Royaume Uni, tous les plus grands spécialistes sont unanimes, certains professeurs n’hésitant pas à parler du « meilleur dispositif qu’ils aient vu dans toute leur carrière » !
Il faut dire que Technoconcept a également mis à profit les six derniers mois pour améliorer et optimiser les capacités du Vibramoov. Initialement programmé pour la rééducation des membres inférieurs, il peut désormais appliquer le même procédé pour les membres supérieurs afin de proposer une méthode globale de traitement. Sachant que personne d’autre n’est capable de faire ça … dans le monde entier !
La société Technoconcept a été créée en septembre 1998 ; installée dans la zone d’activité Pitaugier, à Mane, elle emploie 16 personnes et est cogérée par Daniel Boschat, Frédéric Albert et Nicolas Plumier. »
I found this center like in Orlando USA ( but cheaper and in France)😉I honestly think they may be have more therapies also for neurological plasticity to chèque hire:
In 1997 GyroStim inventor Kevin Maher and his wife gave birth to a little girl. Unfortunately, she was born three months premature, resulting in a diagnosis of severe spastic quadriplegia cerebral palsy. When she reached age 4, her parents were told that her very poor balance might benefit from including vestibular stimulation in her daily home therapy program. She was prescribed a regimen of hundreds of chair spins, log rolls, and somersaults every day. This additional therapy was back-breaking work, balance, and there was no comfortable, practical, or easy method to provide it. There had to be a better way.
Inspired by this problem, Kevin applied his 25 years of experience with robotics systems towards engineering a solution. He designed and built an easier, safer, and more efficient way to provide his daughter with vestibular stimulation, resulting in the first prototype of the GyroStim. Maher’s daughter, Mackenzie, made unexpected and rapid gains, not only in balance, but also in other gross and fine motor abilities, trunk control, energy level, speech, and overall abilities. It soon became apparent that the vestibular stimulation from his unique combination of pitch and yaw rotations had triggered a cascade of significant additional gains well beyond the goal of simply improving her balance.
The Launch
Kevin continued developing his unique rotating chair, and soon his work captured the attention and interest of therapists, doctors, and researchers. Their acknowledgment of the immense need for this innovative device and his desire to make it available to others who could benefit from it reinforced his decision for moving forward with development of the GyroStim and the launch of a new company, UltraThera Technologies.
Soon after the company was formed, the first GyroStim system sale was to the United States Air Force Academy. The second sale went to the Mayo Clinic Aerospace Medical Vestibular Laboratory, further validating the broader interest in his new technology, with additional sales soon to follow.
The Breakthrough
In January 2011, one of the NHL’s top athletes, Sidney Crosby, suffered back-to-back concussions that forced him out of the game for most of that year. As recovery continued to elude Crosby, many feared that the head injury would force him out of the game permanently just as his career was at its peak.
In August 2011, still suffering from debilitating post-concussion symptoms (PCS), it was recommended to Crosby that he try the GyroStim. Soon after, he was back on the ice and was eventually cleared for full contact practice. In November 2011, after nearly 11 months of being sidelined due to the concussions, Sidney Crosby returned to the ice in one of the most spectacular comeback games in history. In 2012, he went on to sign a 12-year $104.4M contract extension with the Pittsburg Penguins, and GyroStim went on to become widely recognized for being the breakthrough technology that helped Crosby overcome his concussions.
The Paradigm Shift: From Passive to Interactive
Through 2013, GyroStim was used to provide passive vestibular stimulation— meaning that the subject seated in the rotating chair received vestibular stimulation without challenges or interactions during rotation. While this simple application of GyroStim was beneficial in many cases, Maher believed passive stimulation was only the beginning of what could be accomplished using GyroStim.
Maher hypothesized that adding an interactive training element during the vestibular stimulation would engage, challenge, and improve the function of physical and cognitive systems (sensorimotor systems) activated during the exercise. Theoretically, this would improve not only balance but also improve the performance of the activated sensorimotor systems, resulting in improved cognition and overall human performance.
To explore this hypothesis, he developed an integrated laser targeting system to provide subjects with interactive challenge during rotation. The subject would use a laser pointer to hit as many targets as possible—while rotating in the GyroStim. This interactive “perceive, process, and react » approach should present significantly greater challenge to the subject’s physical and cognitive abilities than simply receiving passive vestibular stimulation in the GyroStim.
Maher also developed a library of motion profiles, with each profile providing a specific level of intensity, ranging from Level 1 (lowest intensity) to Level 30 (highest intensity). This would allow the clinician to quickly select a level and present the subject with vestibular stimulation and sensorimotor exercises advancing at an appropriate pace for each individual as performance improved. In other words, the GyroStim system and method customize an optimized rate of advancement for each person based entirely on their own performance progress.
In 2014, Maher put his interactive approach to the test during training camps with NFL, NHL, professional boxing/MMA, and Olympic athletes. The positive outcomes achieved supported his hypothesis with nearly all athletes reporting significant improvements in the areas of balance, coordination, spatial and situational awareness, reaction time, hand-eye coordination, object tracking, reduced brain fog, improved sleep, and also better mood, faster reading speed and improved comprehension were reported.
From there, Maher surmised that this same interactive approach for improving athletic performance would also be beneficial when used at lower intensities to help individuals during the rehabilitation and recovery process. His theory was supported by the reports of clinicians and thousands of people from all walks of life who have benefitted from using GyroStim at lower levels of intensity.
This method of applying vestibular stimulation and sensorimotor exercises simultaneously while incrementally advancing the intensity of training has transformed and greatly expanded applications for GyroStim on both ends of the spectrum from injury and illness rehabilitation to athletic performance enhancement.” ( Source: http://www.gyrostim.com/evolution.html )
My blog was created for parents who are searching for advice and testimonials about alternatives therapies for children’s with neurological conditions. I am absolutely for mainstream medicine I am using mainstream interventions for my son as well as alternatives therapies. Just here I am talking more about alternatives not yet recognized therapies.
I am :Svetlana
Mother of Marc
Anoxic brain injury January 2016 at age 4 years 2 months ( Before his accident, he developed normally without any problems. A simple cardiogram could show his WPW But he made 2% of the population « asymptomatic », not jugged enough % for medicine to check every child ekg at birth?)
Cause of injury: (sudden cardiac death -resuscitated- asymptomatic not diagnosed WPW Wolf Parkinson Wright syndrome before his heart stoped)
More than 5 years ago my friend from USA started an online closed support group on Facebook for HBOT called “HBOT for Pediatric Neurological Conditions ”. She asked me to be admin of group it’s happened that she afterwards « gave » me the administration of this group. Naw group become big ( more than 1800 members) parents and professionals from hbot field.
For the first time since Marc Anoxic Brain Injury , I no longer felt alone. I have other parents that can relate to how I feel, what is going on with my son Marc and they quite simply just “get it”.
So as well as on hbot fb page here on my blog I will welcome professionals to join my blog and share their knowledge. I will welcome parents testimonials for alternatives therapies they tried for their children’s .
And all my articles will be based on our personal experience ( for my son treatments we did) as well as on scientific studies I take in account in order to make a choice for therapies applied on rehabilitation program of my son.
So my blog is for parents with brain injured children’s.
I welcome professionals to join my blog and share their knowledge. But they have to be respectful with parents: I want you to know Doctors, that we: parents can’t just “get over brain injury”….and we just can’t accept that “nothing can be done to fix it ( the brain) especially when we see some promising researches in order to “ fix it” but not recognized and so not applied in mainstream medicine….We would love to move on in life as if our child didn’t have a brain injury. We would love to go back to that carefree attitude, a life where this horrible nightmare never happened. Unfortunately this is our reality. Our entire world revolves around brain injury. We talk about it in hopes that you or your families will never have to go through what we have.
I want you to know that sometimes the things you say to make parents of injured child feel better only make them feel worse! Please don’t say “God only gives us what we can handle”, “I don’t know how you do it”, “I could never do that”, “pray harder”, “everything happens for a reason” or anything along those lines and please don’t juge parents fir whatever they doing to help their children’s.
I believe that it is not God’s will to allow my child to suffer from anoxic brain injury. I have to believe that sometimes bad things just happen. And I believe that for him it’s because mainstream medicine not doing cardiogramme (ECG) for all children’s at birth … doctors ask yourself haw many children’s per year injured in mainstream medical procedures and operations?
So at the same time, if you were in my shoes you would find a way to make it work too…..We have no choice and neither would you. It’s ok if you don’t know what to say to parents. I appreciate the honesty.
Doctors I want you to know that parents refuse to settle for their brain injured children’s even when medical professionals are asking them to. Doctors, nurses, therapists, surgeons and alike can offer their medical opinion here on my blog but that doesn’t mean that i and others parents have to agree. Remember, at one point we ( parents of brain injured children’s) were told our child wouldn’t make it and they did. We were told that our child would never walk, talk, eat etc and most of our children do. So when we are being asking to settle for our child, we just won’t. If i settled in the first place, my son most likely wouldn’t be here where he is today. I want my child to have the best life possible! If I can help some parents on my way to helping him so they are welcome to my blog….
I want you to know all parents of brain injured children’s worry A LOT. I am worry when my son sleeps ….Will he die overnight in his sleep from his heart syndrome ( even if we have confirmation from Rythmologue that his 5th ablation o WPW was sucsessful) during I was sleeping?
How do I prove and collaborate with the school system so my child gets the appropriate education with the right accommodations? And if by administration this accommodations will be denied?
How to I protect my child from the cruel world who wants to judge him?
My son is a survivor of anoxic brain injury ( statistically 4% survival rate from out of hospital cardiac arrest and from all this survivals 12% only not in végétative state like my son). And I am convinced HBOT was for him a big help! Me and my husband we are a survivors as well….We have seen things that no parent should ever see. We have heard things that haunt us daily from mainstream doctors !
I really hope that you never have to experience watching your child suffer from any type of brain injury but should it happen, know that there are other parents just like you. And that you are welcome on my blog.
Svetlana
Mother of Marc
En français:
En français:
Mon blog a été créé pour les parents qui recherchent des conseils et des témoignages sur les thérapies alternatives pour les enfants souffrant des troubles neurologiques.
Je suis: Svetlana
Mère de Marc
Anoxie cérébrale janvier 2016 à l’âge de 4 ans 2 mois son cœur c’est arrêtait ( Avant son accident, il développait normalement sans problème Un simple cardiogramme pouvait montrer son WPW Mais il fait 2% de la population « asymptomatique », c’est trop petit % pour que la médecine conventionnelle vérifie chaque enfant cardiogramme à la naissance?)
Cause de son anoxie: (mort subite cardiaque -réanimé – asymptomatique WPW-non diagnostiquée Syndrome de WPW Wolf Parkinson Wright avant que son cœur s’arrêt)
Il y a plus de 5 ans, mon ami des États-Unis a lancé un groupe de soutien fermé en ligne sur Facebook pour l’OHB appelé «HBOT for Pediatric Neurological Conditions». Elle m’a demandé d’être administrateur du groupe et au fil des années c’est arrivé qu’elle m’a «ensuite» donné l’administration de ce groupe complètement… oui group est en Anglais. Maintenant groupe est devenue assez grand (plus de 1800 membres) parents et professionnels de hbot ( thérapie Hyperbare).
https://m.facebook.com/groups/1834837990132052
Pour la première fois depuis acsident de Marc, je ne me suis sentais plus seul. J’ai d’autres parents qui peuvent témoigner même sentiment que je ressens, tout simplement on se «comprends » entres les parents comme ça….
Donc, ainsi que sur la page hbot de Facebook ici sur mon blog, je vais accueillir des professionnels pour rejoindre mon blog et partager leurs connaissances. J’accueillerai des témoignages de parents pour des thérapies alternatives qu’ils ont essayées pour leurs enfants.
Et tous mes articles seront basés sur notre expérience personnelle (pour les traitements alternatives non reconnus que nous avons faite notre fils) ainsi que sur des études scientifiques que je prends en compte afin de faire un choix de thérapies que j’ai appliquées au programme de réhabilitation de notre fils.
Donc, mon blog est pour les parents ayant des enfants avec les dommages au cerveau.
Je souhaite la bienvenue aux professionnels pour rejoindre mon blog et partager leurs connaissances. Mais ils doivent être respectueux avec les parents: je veux que les médecins saches que on peu pas simplement « accepter des lésions cérébrales » … et nous ne pouvons pas accepter que « rien ne peut être fait pour réparation le cerveau » surtout quand nous voyons des recherches prometteuses pour ca ….mais pas reconnues et donc pas appliquées dans la médecine traditionnelle …. Nous aimerions continuer dans la vie comme si notre enfant n’avait pas de lésion cérébrale. Nous aimerions revenir à cette attitude insouciante, une vie où cet horrible cauchemar n’est jamais arrivé. Malheureusement, c’est notre réalité. Notre monde entier tourne autour des lésions cérébrales. Nous en parlons dans l’espoir que vous ou vos familles n’auriez jamais à passer par ce que nous avons passé.
Je veux que vous -médecins -sachiez que parfois les choses que vous dites aux parents ne font que aggraver notre situation. Svpl : ne dites pas des banalités comme : « Dieu ne nous donne que ce que nous pouvons gérer », ou « Je ne sais pas comment vous faites », ou « Je ne pourrais jamais faire ça », « Priez plus fort », « Tout arrive pour une raison » ou quoi que ce soit, ne jugez pas les parents, quoi qu’ils fassent pour aider leurs enfants!
Je crois que ce n’est pas la volonté de Dieu de permettre à mon enfant de souffrir d’une lésion cérébrale anoxique. Je dois croire que parfois de mauvaises choses arrivent. Et je crois que pour lui c’est parce que la médecine conventionnelle ne fait pas de cardiogramme (ECG) pour tous les enfants à la naissance … son anoxie a pu être évité si on a fait ça !
Le médecins doit se poser le question : combien d’enfants par an ont un accident dans cadre d’un procédures et opérations médicales courantes et reconnu ?
Donc, si vous étiez à ma place, vous trouveriez que se limiter que au moyenne « reconnus » mais qui donne aucune espoir c’est pas reasonable . Et que élargir ses recherches au sciences et pas juste expérience médicale @ reconnu » est reasonable et logic. Nous n’avons pas le choix. C’est bon si vous ne savez pas quoi dire aux parents. J’apprécie l’honnêteté des médecins.
Médecins Je veux que vous sachiez que les parents refusent de se contenter que leurs enfants avec dommages cérébraux doit être just maintenu « confortable » avec soins de confort, sans espoir de progrès : même lorsque les professionnels de la santé le leur demandent. Médecins, infirmières, thérapeutes, chirurgiens et autres peuvent offrir leur opinion médicale ici sur mon blog, mais cela ne signifie pas que moi et d’autres parents doivent être d’accord sur votre point de vue. Rappelez-vous, à un moment tout les parents d’enfants avec dommages cérébraux ont été dit QUE notre enfant ne le ferait jamais et ils l’ont fait! Contre toutes prédictions des médecins….
Donc, quand medecin nous demand de nous contenter contant avec niveau de notre enfant, nous ne le ferons pas….Si je acceptais en premier lieu en 2016 à l’hôpital les conseil pareils mon fils ne serait probablement pas là où il est aujourd’hui.
Je veux que mon enfant ait la meilleure vie possible! Si je peux aider certains parents sur le chemin, ils sont les bienvenus sur mon blog …
