We have met Avery before (here), and now her Mom, Josephine, would like to tell us a little about their experiences with Selective Percutaneous Myofascial Lengthening. Avery just had this surgery 2 days ago, so it is still early days, but Josephine plans to keep us updated with Avery's progress. Here's what she has to say about their experiences so far:
How did you hear about SPML?
Our ABM therapist recommended it to us, since she really felt that Avery's muscle contractures were preventing Avery from progressing.
Why did you decide to try it?
It's minimally invasive, minimal risks, and addressed what everyone agreed is holding Avery back the most (muscle contractures) We definitely felt it was a better choice than traditional PERCS, with a much lower recurrence rate, and higher effectiveness long term.
How old was Avery when she received this surgery, etc?
5 and a half (2 days ago, Aug 26 2011)
Describe the procedure as you understand it:
She got SPML in 3 locations on each side (6 total). Gastroc recession, semitendinosus percutaneous tenotomy, Myofascial lengthening single hamstring at knee (on the right) and multiple hamstring at knee on the left, percutaneous adductor tenotomy left and right, and alcohol block obturator nerve on both sides. The SPML differs from traditional PERCS in that they don't actually cut the muscle - they sort of "mesh" the myofascia surrounding the muscle. I really recommend these two websites if you're looking for information about the procedure: Dr Nuzzo's info page here. Dr Nuzzo developed this method, and although he writes in a long-winded sort of way, all the information you could want about the procedure itself is there. Dr Yngve, who learned the method from Dr Nuzzo, answers some more questions about it more clearly here. We chose to go to Dr Yngve, simply because he accepted our insurance. He was really great. The alcohol block addresses spasticity.
Please share some of the changes (good and bad) you saw in your child:
Avery is only 2 days post op, so obviously, it is still early days, but I will tell you some of the changes we have already seen! They measured and recorded changes in her range of motion while she was still in the OR (image included), and since we got home, the two biggest changes we have seen so far have been the fact that she can now wiggle her toes (see video), and she can also sit with her legs straight out in front of her in a V shape, as you can see in the photo above. Both these were practically impossible for her before, and now it takes almost no effort :) It is still too painful for her to be up on her feet at this point, but that is no surprising I suppose. She was excited to try walking almost as soon as she was awake, but she's now feeling a little nervous about it, because every time she's tried to stand up so far, it's hurt. Hopefully tomorrow it will be less sore so that she can try her legs out a bit.
Would you recommend it to someone in a similar situation?
What do you wish you had known when you were making the decision to try it out?
I know that a lot of people aren't aware of the fact that the legs are casted afterwards. I only knew because I found several blogs from people who had already done it. Avery has half casts on her legs, and she had to wear braces to keep her legs straight for the first 24 hours. She doesn't have to wear the braces during the day anymore, but she does have to wear them at night for at least the next 4 weeks or so, so that she doesn't sleep with her legs curled up.
Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!
I will post again about this in a month or so to let you know how things are going.
For more pictures and information on Avery and her progress, please visit Josephine's blog here.