I have parapledgia Cerebral palsy (spastic dipledgia) and as I got older my muscles and tendons shortened (called "contracture"), resulting in gait and mobility challenges.
This form of lengthening, done under general anesthesia as an outpatient, involves micro-incisions. The benefit is that less scarring forms, a good thing since scar tissue can cause recurrent contracture.
As a persons physique changes, the web of tissue that surrounds muscle and tendons, myofascia, can tighten up and become restrictive. When cut, the muscle beneath can stretch and lengthen for better agility. It's often done at the back of the ankle to alleviate calf and heel cord tightness/hamstrings -among other areas...
I will also be getting alcohol blocks in very spastic areas to slow down the messages that are supposed to tell your legs what to do so they have a chance to learn and not just be bombarded with a ton of info that they can't figure out.
I've lived for 48 years with spasticity and I've tried all the anti-spasticity medicines and none of them work mostly because I cannot tolerate the "therapeutic" doses" they make me a zombie or simply don't do anything.
The surgery I wish I had gotten as a kid was SDR - It's truly a gift for someone with
spastic diplegia. As a child I would have qualified for this very invasive spinal surgery that eliminates spasticity forever. Giving the child or adult the ability to walk in most cases and even if it doesn't for whatever reason not living with spasticity is a game changer.
At my age and unable to walk in all areas (adults must be able to do, I wasn't a candidate for this surgery)
I was so focused on SDR Surgery I nearly missed the SPML Surgery option which turns out has been a perfect fit for me.. It's so important to do your own research and be your own advocate
Here's what doctors don't tell you!
Doctors generally tell their patients and there families (when a patient accidently finds out about SPML or SDR not to do it.) Most doctors and therapists aren't familiar with SDR or SPML nor do they care to find out so they just say nope it will make you child worse... (LIARS)
Not one doctor ever mentioned SPML or SDR as an option.
They've been doing SPML & SDR for over 20 years!
Honestly, I thought doctors were supposed to help their patients... I thought doctors liked new techniques.. Oh wait! My Bad!.. They only like new techniques that they come up with.. (doctors egos and all!) What happened to "do no harm?" -
Stopping a patient from having the best quality life is "doing harm"
Did I mention that after you are an adult apparently we're good to go! I say
this because it's been nearly impossible finding a doctor that knows anything about adults with CP- It's like finding a needle in a haystack... Once a neuro thought I had MS he was so attentive and helpful...UNTIL he realized it was indeed CP.
He told me not to come back...
He thought I had MS because (CP isn't -gag me- progressive) Seriously!?
The first doctor to give me meds in my 30's was a pain Managment doctor
not a neuro or a orthopedic doc..
It wasn't until 2 years ago that I found a neuro that actually cared that knew about CP and how to effectively treat it to the best of his ability. When I told him about SPML he was all for it especially because the other things weren't working.
That's an awesome doctor.
I will have NEW "baby deer legs" without tightness or spasticity for the first time in my entire life.
Yeah I'm pretty psyched. I'm so psyched that I'm not worried about the surgery or the 3 x a week for 6 weeks intensive therapy or the knee immobilizers to keep my knees straight while I sleep . I have always slept all curled up like a ball.
I had a version of this done when I was between 3-5 and -8-9 years old. The doctors actually "cut" the facia/tendons and no blocks for spasticity with a long incision all the way down the back of my leg hamstring and the same with the heel-cord surgery with 6 weeks non weight baring each time with the average hospital stay a week sometimes 2.
Note: They still do this surgery and I am against it for a very specific reason. Once they cut the facia/tendon you lose strength that you will NEVER regain no matter how much therapy you have. Not to mention it doesn't address
spasticity at all.
This version is very painful with a long recovery time. It also creates a level of weakness that never can be regained.
Dr. Nuzzo created SPML Technique
99 Beauvoir Ave, Summit, NJ 07901
Phone: (908) 522-5801
He treats adults and children
I've heard wonderful things
about both doctors.
Department of Orthopaedics
301 University Blvd. Ste. 2. 316
Galveston, Texas 77555-0165
Call and ask for Belia 409-747-5700
She will send you the packet to fill out and explain what the doctor will need.
NOTE: This is my doctor
Walking on uneven ground
Children & adults are allowed to walk when comfortable within a week and sometimes the next day. If not walking the 3rd day, it's time to start.
It usually takes 1-2 months to regain the before surgery level of activity, then expect monthly improvement up to 4-5 months from surgery.
Physical therapy can be very beneficial and can be resumed immediately following the procedure.
This is only for SPML - if it's combined with some other procedure then it changes things a little and your doctor will let you know
You see your doctor to assess you further and decide if you need further treatment than he originally thought
Physical therapist does a video gait analysis. So that they can track progress on your follow up visit at
During the SPML surgery you may also be receiving Alcohol Blocks
They work by eroding the myelin sheath over the nerve. That slows the signal down from the brain.
Once the myelin sheath regenerates the signal speeds back up and spasticity is back.
Pediatric Neurosurgeon specialized in Spastic Cerebral Palsy
Dr. Park came up with the technique called SDR - (Selective Dorsal Rhizotomy) which has changed the lives of countless children and adults with spastic diplegia Cerebral palsy.
I did not have this surgery because by the time I found out it was too late as I couldn't walk unassisted in all areas which is a requirement for adults to have this surgery.
Children on the other hand are not required to be able to walk.
There is a facebook group you can join and ask questions : Selective Dorsal Rhizotomy - St. Louis Children's Hospital
Note: There are other doctors who do this type of surgery but they don't do it exactly like Dr Park .. Please only see Dr. Park - this surgery is far to invasive to trust to anyone other than the world renowned neurosurgeon Dr. TS Park.