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My Experience

Selective Percutaneous Myofascial Lengthening,

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. 


  • I didn't have any medicine intervention until I was in my 30's .. Since then I've tried the following..


  • Botox -Either it didn't do anything or it made it impossible for me to move my legs. (scary!) 
  • Valium (very small dose 2mg helps me now that I have had SPML Surgery)
  • Tizanidine (didn't notice much difference since dosage was so small but I did have major dry mouth and it lowered my already low blood pressure
  • Baclofen (very small dose 10mg helps for sleep only) *for me*
  • Levodopa Helped but couldn't live with the side effects
  • Baclofen Pump - I rejected this over and over as it's very invasive and dangerous. Doctors like to offer this option (in some cases it is life changing) however my opinion is that it should only be done as last resort. 


  • I would always get side effects at the therapeutic doses


  • I've also had doctors talk to me about a baclofen pump (I said NO!) 
  •  I feel a baclofen pump should only be used as the last resort. It's scary and I don't want it in my body. (I mention this twice because it's very scary especially for those who cannot speak and let you know there's something wrong … and kids...  The machine malfunctions and when it does you don't have long before you could die or go into a coma. 


  • I've had countless hours of therapy that did absolutely nothing, do you know why? Because spasticity wasn't addressed.


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!


  • Cerebral palsy is non progressive (liars) It's very progressive!!
  • It is way more complicated than just early aging... (TRUTH!)
  • Any spastic level of CP is progressive - meaning eventually they lose the abilities they had .  You start to lose ground around age 10 - Guess that's what they call early aging?  (Without proper treatment...)
  • Spastic Cerebral Palsy is VERY painful and gets worse with age
  • Even with therapy & surgeries to fix the problems caused by spasticity 
  • unless you address the spasticity it's not going to help someone keep walking.


REALITY!

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!? 


Fun Fact:

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.

Baby Deer Legs

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. Roy M. Nuzzo, MD

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. 

David Yngve, MD

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

What exercises are recommended after SPML procedure

Long Sitting

Giant Steps

Walking on uneven ground

How Soon Before Starting PT?

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 


PRE-OP Visit

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 

14 weeks. 



Alcohol Blocks

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. 

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SDR - Dr Park

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.