Since 18 months old, Nash has been getting NeuroMovement(R) lessons (ABM) from our local practitioner as well as many intensives (2 lessons per day for 2 weeks) in California and Nevada each year. He has come much further than expected and continues to change after each intensive! However, over the past year, the practitioners and his pediatrician noticed his right leg having more tone and less range in the ankle, which is common in growth spurts. This causes Nash to trip and fall often, and walk with a limp.
After corresponding back and forth with two amazing physicians in New York (Dr. Jordan) and New Jersey (Dr. Nuzzo) over the past 3 years, it has been recommended that Nash have a surgery that will significantly improve his function in addition to continued NeuroMovement(R) lessons. The procedure is called Selective Percutaneous Myofascial Lengthening (SPML). This will significantly change the quality of Nash's walk/gait, as he is quite unsteady, and trips often (as discussed above) due to the spasticity and lack of range in the right ankle.
Dr Nuzzo describes Nash's case as "varus", which has no compensatory fix, and is very disabling, out of proportion to the degree of what you see. Varus can cause a wide range of symptoms/problems beyond the leg/foot, which in turn, fixing the varus can result in fixing many of the related symptoms (spasticity in the arms, neck, chest, face/tongue). He says "just fix the varus and the rest will usually just disappear".
This is a surgery for the treatment of the spasticity of tight tendons that are found in children with cerebral palsy. "Percutaneous" means using very small skin incisions (2-3mm) in length, so small that stitches aren't needed. There is NO CUTTING involved in this procedure, instead, Dr Nuzzo uses a needle to poke tiny holes in the fascia, just under the skin where the tight spastic, or misfiring nerves are. He is a true genius, and has changed the lives of so many children (and adults). There is only one other doctor who preforms SPML in North America, (Dr. Yngve) located in Texas, who trained under Dr. Nuzzo. This procedure is so non-invasive, it is done as an out-patient!!! WHAT? Yes. No overnight in hospital.
Dr Nuzzo developed SPML over 30 years ago and has successfully performed it on thousands of patients, many of whom would have never walked without it. His masterful work has been dismissed by colleagues, as results of his studies have been "too good to be true". So I guess it's accurate to say what he does is unbelievable. As he has tried over and over again to convince other surgeons without success, he has chosen to spend his time and energy changing the lives of these patients who come to him from all over the world.
Dr. Nuzzo will also administer ETHYL ALCOHOL BLOCKS during the surgery. Alcohol blocks help cross reactions - not so much spasticity in and of itself. A cross reaction is when the movement of one limb causes the other limb to move as well. They are applied using a needle directly to the nerves. Alcohol is a fat dissolving substance. Fat is also a great conductor for electricity. Essentially what is happening when an alcohol block is preformed is that they are removing some of the fat around the nerves so that they are not firing so rapidly. Now the nerve impulses begin to pile up because the can’t all jump through at once and begin coming through as one. Think of a crowded arena, if all the doors from out side were open everybody would barge in all at once in chaos BUT if they open only a few doors everyone is forced to get in line. Adding control to chaotic situation. Dr. Nuzzo has a great example of how this works on his website. This is not to be confused with botox or phenol alcohol blocks. Both of which Dr. Nuzzo strongly advises against.
Following the surgery Nash will need to wear an AFO (ankle foot orthotic). Dr. Paul Jordan is a pediatric orthopedic surgeon doing orthotics. He has worked with Dr. Nuzzo for many decades (used to perform SPML as well). He does extensive assessments, and his AFO'S are more like teaching tools with the idea you won’t need them forever. His AFOs have the toes and ball of foot uncovered for more feedback from the ground to the brain, and not hinged so the child cannot crouch. He designs them with the brain in mind. Dr Jordan and Nuzzo highly recommend not to use traditional AFO's as they become a ski boot for the child, and are compensatory (holding the foot in a static position) rather than helping the child move forward and learn to use that foot. SPML is essentially a mute point if not followed up with the proper AFO. Dr. Nuzzo discusses specific AFO's <--- click here.
This of course comes with a hefty cost, and is not covered by our healthcare system. There is nothing offered in Canada that compares to this procedure, as traditional tendon lengthening cuts the tendon which leaves more scar tissue behind, worsening the problem long term. We know this is the next step to take, for Nash's quality of life, safety, and overall well being.
Breakdown of cost:
Consult with each doctor, surgery, hospital fees, anesthesiologist, AFO, with accommodations and flights for 2, including 8 NeuroMovement(R) lessons in NY post-op: $20,000 CAD (November 19-28).
Nash and Wyatt will also have to fly back to NY around 4 weeks post-op for the cast removal and AFO fitting with Dr. Jordan (right around Christmas - good to have the cast off, but flights/airports will be crazy). Just for 2 days. ($2000 CAD).
Anything over and above that will go towards multiple intensives within the year to ensure Nash's brain integrates the new "leg/foot" he will be introduced to, as all sorts of muscular and skeletal relationships will have changed. It is easy to snap back in to old patterns/habits, and it is critical that he learn how to properly use the leg with his new freedom and range. In order to do that, its the BRAIN that needs to re-organize his movement. Therefore, it is imperative he receive multiple intensive NeuroMovement(R) lessons after SPML, so his nervous system can immediately start making sense of the new mobility of the tissues surrounding his muscles and bones. ABM lessons provide this kind of education to the nervous system.
Each trip for a 2-week intensive of lessons is approx $13,000 Canadian dollars. We will of course be utilizing our local practitioner as much as possible/available as well in between intensives. If we were to take him for 3 separate intensives within the year post surgery, that will cost around $40,000 alone.
We will also be having a burger night fundraiser in Saskatoon at the Travelodge Hotel on October 19th at 6pm, and will keep you posted what is raised :) For tickets to the burger night email [email redacted] or for info visit the Facebook page Steak Night Fundraiser
Thank you so much for taking the time to read about Nash's story and hopefully sharing information about this procedure can reach many other children and families!
Nash's Story (up to 2015)
Documentary on NeuroMovement
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