Friday, April 3, 2009

To PERCS or Not to PERCS

So many doctors, therapists, parents...so many opinions.   As a parent of a special needs child, you are never too comfortable with the decisions you have made regarding therapies, procedures and surgeries.  You research it ALL, you talk to EVERYONE and you pick and chose...somtimes based soly on your gut feelings.  Well, my gut is changing.  

I HAD decided that they would be NO SURGERIES for at least 2 years and I HAD felt great about that decision.  However, I am very close to deciding the the PERCS procedure (please read more about it below) is just what Grace needs to get her mobile.  I have now seen 4 children, before and after PERCS, and am amazed by the progress.  We will be going to Galveston to see Dr. Yngve very soon and we will do what he says....I think.  Please pray that we will make the right decision.   I'm praying like crazy!

Comment from Dr. Yngve:
I first heard about the Percs (SPML) procedure from a Physical Therapist in the fall of 2005. She had heard about great results with this procedure at a Physical Therapy meeting. I had never heard of the procedure and she urged me to look into it. I found Dr. Nuzzo’s web site (www.pediatric-orthopedics.com) and learned a lot there but still had more questions. In April 2006 I visited Dr. Nuzzo in New Jersey for 2 days started on the process of learning the procedure. I have now done over 100 cases and have been pleased with the results. This procedure does a lot more than Botox, and doesn’t have the long recovery period of surgery with full length incisions.

PERCS (SPML) F.A.Q.
What does Percs (SPML) refer to?
Percs (SPLM) refers to an outpatient surgery usually under a general anesthetic for the treatment of the spasticity and tight tendons that are found in children with cerebral palsy. The name Percs comes from the surgical term “percutaneous” which means using very small skin incisions. The Percs (SPML) method has been developed over the last 20 years by Roy Nuzzo M.D. of Summit NJ. SPML stands for Selective Percutaneous Myofascial Lengthening. I use the term SPML to refer to the specific techniques taught by Dr. Nuzzo.

What is exactly done with the Percs (SPML) procedure?
The Percs (SPML) procedure involves releasing tight bands of tendon. This is done where muscle and tendon overlap. These areas of overlap are areas where a tendon starts to blend into a muscle. The tendon spreads out and is thinner at this location and is called Myofascia. When the myofascia is cut, the muscle under it can easily stretch and lengthen.

What part of the body can be treated with Percs (SPML)?
Some children have tightness and spasticity in many locations in the legs, with the Percs (SPML) procedure, many areas can be addressed during the same procedure.
Common areas for Perc (SPML) surgery are:
n at the back of the ankle for calf / heel cord tightness and spasticity
n behind the knee for hamstring tightness and spasticity
n in the groin area for scissoring gait and groin spasticity

What age can be treated with Percs (SPML)?
Percs (SPML) works well for children of all ages and for adults. Because Percs (SPML) procedure uses micro incisions only about 2 mm long, there is very little scar that forms as a result of the procedure. This is a good feature since scar is known to be associated with recurrent contracture. This allows Percs (SPML) procedure to work well for all ages, including groups that have a reputation for recurrent contracture following conventional tendon lengthening surgery such as very young children and adolescents.

What are the long term results of the Percs (SPML) procedure?
The best data comes from Dr. Nuzzo’s web site where he reports a 5 year review of 278 cases. “Post op admissions were 0.01% (4 cases, single night). Repeat procedures at any location were 10%. Recurrence of operative site contracture occurred in 7%. There were no cases of infection, over lengthening, significant hematoma. All surgeries were performed supine. None required surgical room time in excess of 60 minutes. Parent satisfaction was positive in 100% with similar follow up survey results one year later.” My results have been similar.

Can the Percs (SPML) procedure decrease spasticity?
Yes. Walking on a contracted joint puts a strong pull on the muscle- tendon unit with each step. This stimulates spasticity. Lengthening the muscle- tendon unit decreases the spasticity in that area. The beauty of Percs (SPML) is that since it is practical with the minimal incisions to lengthen muscle- tendon units in many locations in the lower extremities, spasticity can be decreased in many locations.

What is an alcohol nerve block?
The alcohol nerve block is a common procedure that is done at the same time as Percs (SPML) in children who have overactivity of the obturator nerves, which are nerves in the groin that contribute to stiffness of the hips or scissoring gait, in which the legs cross in front of each other in walking. The alcohol nerve block takes the nerve from an overactive spasticity related state to a more normal active state. It does this by dissolving the fatty coating, called the myelin sheath which is wrapped around the nerve. The nerve itself remains intact. The myelin sheath can grow back in about 3 years. The alcohol block is often used to decrease spasticity in the legs when it is associated with groin tightness.

How is the ankle area treated after the Percs (SPLM) procedure?
There will be a cast from below the knee to the ball of the foot. Walking is encouraged. It is best to put a shoe directly over the cast. One type of shoe that may accommodate better to the width is the Vans brand, because of the construction on the tongue and laces.

How is the knee area treated after the Percs (SPML) procedure?
We will put on a knee splint made of cloth and foam with Velcro straps after the procedure. You can take this off for daytime activities. It should be worn every night for a month to prevent sleeping in a curled up position.

How is the groin area treated after the Percs procedure?
Nothing special is needed.

What exercises are recommended after the Percs (SPML) procedure?
Long sitting. This is sitting on the floor with the knees out in front as straight as possible. This helps to keep the backs of the knees stretched out.
Giant steps. Encourage the child to take as big steps as possible. Try counting the number of steps it takes to walk across the room. Then try to walk across the room using giant steps. You should count fewer steps.
Walking on uneven ground. This teaches the ability to deal with the unexpected. It also teaches fast reactions. It helps in learning new ways to use the legs.

How soon can children resume PT following Percs (SPML)?
Children who have the Percs (SPML) procedure are allowed to walk when comfortable, usually the next day. If not walking by the third day, it is 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 within the week following the procedure.

28 comments:

Timi said...

NO!!!!!!!!!!!!!!

Anonymous said...

My twins had the PERCS last year w/ Dr. Yngve and it made the most difference of any therapy we have ever tried. They are still showing improvement in their agility and mobility almost a year later.

Kasey said...

Dear Jacolyn,

I am praying that you will be able to make the decision that is best for Grace.

Kasey

BusyLizzyMom said...

There are so many decisions to make. A friend of ours had brought her daughter to NJ (from Canada at their own cost for the surgery as there is no one in Canada who does the procedure) and the results are amazing. She is on our CP moms group you could ask her about it. Whatever you do will be right for Grace you know what she needs.

Anonymous said...

You have done your homework sweetie. Love Grannie D.

Jackie said...

As always, we are praying for all the kids (mom & dad too) but we especially pray for Gracie to walk. I will begin to pray for you to have God's wisdom - not from men - but from His Holy Spirit. You will do the best thing... I know it.

therextras said...

I only have 2 references for PERCS and both of them are positive. This is a NEW surgical technique, but much less invasive than all the other techniques that have been used for years.

I will be checking back to see what you decide.

Barbara

Keri said...

I've heard nothing but great things about PERCS, especially when comparing to SDR. I know a mother who took her daughter to see Dr. Nuzzo and had the procedure done. She said the results are astounding. Her daughter is able to do things she has never done before.

My son is spastic quadriplegia CP and I've been pondering this same surgery. I've done some research, but not intensive. Now that he just turned 4 and is getting stiffer as he gets older, I may have to think long and hard about making PERCS a reality. These decisions are never easy...

twinmama said...

Wow, big stuff/big decisions. I know how hard it is to grapple with these things. Good luck with this process.

Anonymous said...

My daughter is having PERCS next Tuesday with Dr. Nuzzo. Does anyone know how long the cast stays on after the surgery?

Thanks!

Keri said...

I just contacted Dr. Nuzzo to see if my son will be a candidate for PERCS. I'm hoping he will be.

Rich said...

A friend had PERCS last summer, and as an observer, not his parent, I must say, his walking and mobility, and feet flat has GREATLY improved... He had Dr Nuzzo...

http://tinyurl.com/d9ppdn

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Anonymous said...

If anyone was still wondering I believe the casts stay on for 2-4 weeks depending on what tendons are released. I was wondering how your child has done since having the procedure. Just curious. Thanks for posting.

Ellen Stumbo said...

Found your blog doing a search for PERCS. I would love to chat with you about it. You should be able to link to our blog from my profile.
Our daughter has CP and I think this might be grea for her. I am bringing it up for the doctors. But we are new to CP and any advice is greatly appreciated!

Leslie said...

My daughter (4 yrs) just had the PERC procedure done by Dr. Yngve about a month ago. The surgery and recovery have been very easy. She has CP only on her left leg, so the day after surgery she was up and walking, and within a few days was running (with a cast on of course). The cast stayed on for a month, and we just got it off a few days ago. I'm not sure at this point what the long term effects/benefits will be. But her PT has been amazed by the results.

kathy m said...

Has anyone had success with a child who is spastic quad? This describes my daughter and I would love to hear about results. She will never be upright and walking, so will it help?

Moumita said...

Hi Leslie,

My daughter is 4 years old and has CP. She is not able to stand or walk. We are planning to have SPML surgery done by Dr. Yngve next week. Any information on this regards is highly appreciated. How is your daughter doing after the surgery?

Jacolyn said...

Leslie, if you get this please email me at jlieck@sbcglobal.net. I would love to tell you about our wonderful experience with Dr Yngve

Anonymous said...

My son is 4 years old and has CP. He walks on a walker but cannot walk on his own. Currently, he receives Botox injections every 3 months in his legs. We are going to Dr. Yngve for a consultation for the PERCS procedure. I am very excited! I have heard nothing but good about the surgery. Saying lots of prayers that this will help my precious boy!

Maria Spencer said...

Hi Leslie, My daughter is a person with left hemiplegic cerebral palsy, and someone just told me about this procedure yesterday,and found your blog while researching...
Did you decide to go with this treatment? If so, how much time has gone by, and what are the results? My daughter is 9, and I am most interested in the long term positive effects from this procedure. Can you contact me at MariaJoSpencer4@gmail.com or my blog site www.mariasmessage.blogspot.com.
Thanks!

Nicky morris said...

Here is Facebook group about SPML.. Families researching it, and many families that have already done it, info, experiences it is great https://www.facebook.com/groups/454155661351106/