Made of Gray

PERCS-SPML Procedure Scheduled for Friday

Raising the Rare ChildHolly D. Gray2 Comments

Since Caleigh was three her hip has been displaced or out of socket fifty percent. This is something that Cerebral Palsy does for our girl. As the person's bones grow, the muscles don't follow suit. This leaves them tight and consequently pulling on the bones and joints. Over the past few years we have used Cortisone and Botox to temporarily relieve her pain in that hip and muscle strain in both legs. At this point the pain has increased and the time to do something has come. Enter the SPML (Selective Percutaneous Myofascial Lengthening) procedure aka PERCS with Alcohol Nerve Block injections.  

PERCS/SPML Procedure via madeofgray.com

Caleigh's home orthopedic doctor has been an advocate for waiting on hip surgery until she got a little bigger. This allows for larger tools in the operating room and bigger screws and plates. Last year Caleigh reached that point in her growth. 

Are you freaked out yet? I know I was. So much so, that I completely skipped our six month follow-up appointment this past Fall because I knew that they would want to schedule surgery on both hips even though her right hip isn't displaced. This surgery would have involved a long recovery with a spica cast for six weeks to three months. I dodged phone calls and postcards from scheduling like they were the plague... until they stopped. 

I knew there had to be an alternative. 

For years I've known about the SPML procedure, often called PERCS, that Dr. Nuzzo developed. Dr. Nuzzo in New Jersey along with Dr. Yngve in Texas are the pioneers of this surgery. I even talked with Dr. Nuzzo's office when Caleigh was three. 

I honestly didn't think that the PERCS procedure would have anything to do with Caleigh's hip dysplasia, but I did want a second opinion before diving into the big bad hip surgery. Since we are located in Texas, Dr. Yngve was the obvious choice. The main reason I chose a second opinion with him is because his practice is strictly with cerebral palsy and scoliosis patients. Caleigh's home orthopedic surgeon sees everything from a broken arm one minute to sports injuries the next. Why wouldn't we want an expert that thinks about the full body when dealing with CP? 

So I sent off Caleigh's records, filled out the medical history forms and waited. A week later I talked with a nurse in Dr. Yngve's office and answered more questions that she had. Two days later I was speaking with Dr. Yngve myself. He spent a tremendous amount of time on the phone with me and I immediately felt comfortable with him. He answered my questions, I answered his and when we hung up the phone there was an understanding of Caleigh's needs and a plan for surgery.  

PERCS-SPML Procedure via madeofgray.com

Today we will be driving to Houston to see Dr. Yngve in his clinic. Friday, Caleigh is scheduled for the out-patient procedure. The planned surgery involves alcohol nerve block injections to the hip and adductors. Caleigh's hamstrings and calves will have the actual PERC/SPML procedure. She will leave Houston the following day with casts on both legs from the knee down to the ball of the foot. She will have to wear these for a month and knee immobilizers at night for two months. Once he actually sees Caleigh in clinic, the plan may change slightly. We'll roll with it and go with our gut. Right now, this feels like the right course of action.

Dr. Yngve wants to avoid the big bad hip surgery. Realistically, Caleigh uses a wheelchair to get around. She uses a gait trainer and stander for walking and standing. She isn't and will not be walking independently. Neither the hip surgery or the PERCS will change that. Her leg length discrepancy will not change either. With the injections and the PERCS being minimally invasive we will avoid the long recovery and the intense spica casting associate with hip surgery. Since we take Caleigh to the restroom 14-18 times a day, not to mention the showers associated with Short Bowel Syndrome; we are hoping to skip the spica cast all together. The PERCS and injections can be repeated if necessary, but with several years in between as opposed to Botox which is every three months. Essentially he is trying to remove the pain associated with the hip and extremely tight muscles. Making life comfortable is priority number one. 

If you want to learn more about Caleigh's upcoming SPML (Selective Percutaneous Myofascial Lengthening) procedure; Dr. Yngve has a great FAQs document here.

Caleigh doesn't seem nervous. We talk about the casts, surgery and discomfort that she will feel. We assure her that it will be worth it in the end. She's mostly excited to choose the color of the casts and have all of her family and friends sign them. 

Read the next post in this series here...


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