Avery and SPML (early days)

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?

Yes

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.

Joseph and Selective Dorsal Rhizotomy

Joseph is seven years old and has Hydrocephalus and Spastic Diplegic Cerebral Palsy, and he recently travelled to St Louis for a Selective Dorsal Rhizotomy. His Mom, Stella, says that they decided to go ahead with the surgery because she knew it would be life changing, and even though they are only a few days post-op, there are already noticeable changes in Joseph's physical abilities. Here is what Stella has to say:

Please share some of the changes (good and bad) you saw in your child:

We are only a few days post op, but if I had to do it all over again I would. Muscles are no longer tight, stretching is pain free and easy. Before surgery, stretching was limiting and painful. He is starting to make movements that he could not do before surgery. The road is not easy but worth it.

Would you recommend it to someone in a similar situation?

most definitely

What do you wish you had known when you were making the decision to try it out?

It was everything that I expected and more

Please share some of the details of your experiences, past or present.

We have tried botox, baclofen, going to other doctors and more doctors for another opinion and finally resulted in SDR. They believe Joseph will walk independently. But it requires work on our part and his making sure he is stretched but to see him walk for the first time it will be worth it all.

Stella, we hope that you will update us on Joseph's progress! 

Avery and Hippotherapy

Avery was born with hydrocephalus due to Dandy Walker Variant, and was later diagnosed with Spastic Diplegic Cerebral Palsy. Her Mom, Josephine, started taking her to hippotherapy when she was about 2 yrs old, at the recommendation of Avery's physical therapist, and she went once a week for about 6-10 week session during the spring and fall for a couple of years. 

Here is what Josephine has to say about their experiences:

Why did you decide to try hippotherapy?

It seemed like it was worth a shot.

Describe a typical session:

She was given various tasks while sitting on the horse - letting go with one hand, reaching for balls/bubbles/rings, standing up in the stirrups and trying to hold her arms out straight. Sometimes they would have her turn around in the saddle so she was sitting backwards, and sometimes she would kneel on all fours on the saddle while the horse walked around the ring. All sorts of activities to encourage better balance and develop core strength and stability. Our therapist also started and ended each session with a test of Avery's balance/stepping skills, recording how long she could stand unaided, and (later on) how many independent steps she could take.

Please share some of the changes (good and bad) you saw in your child:

By the end of the last session we did (when she was 3), Avery was able to take up to 9 independent steps and balance unaided for up to 8 minutes. Also, just sitting on the horse was a superb stretch for her adductors - she was able to separate her legs much further.

Would you recommend it to someone in a similar situation?

Yes

What do you wish you had known when you were making the decision to try it out?

I don't know, but I wish we could do it again. Since we got released from our traditional PT (because we started doing ABM), we can't get it covered by our insurance anymore.

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!

Avery loved hippotherapy, it was excellent exercise which felt like playing! She achieves so much more when it is fun. She loved the horses, and the therapists and volunteers were always wonderful. I would really like to be able to do it again.

Please visit Josephine's blog to learn more about Avery's progress.