Tuesday, July 12, 2011


Avery in her new exercise room :)
Mystified by today's title? Welcome to our world. We have been wrestling with some decisions for a few months now, but I haven't wanted to write about it before now. I still don't want to, but we're getting close to actually acting now, so I think I should record some of the process.
One of the things that changed when we started ABM therapy was that we stopped making Avery wear AFOs. The reasoning behind this is that it limits the variation of movement and therefore the forming of new patterns and connections between brain and feet. Anat's article explains this better than I could. Along with everything else I know about the theory behind ABM therapy, this makes complete sense to me. And it is also one of the reasons I wish we had found out about ABM therapy earlier in Avery's life. So she hasn't been wearing braces, which means that she has been able to "experience" her feet more as part of her body, but, of course, since she does like to be up on her feet, it has resulted in this:

Obviously, this is not good. Obviously, something needs to be done. Shortly after we started Anat Baniel Method therapy last summer, Carla suggested recommended that we look into Selective Percutaneous Myofascial Lengthening (SPML). She has not been the only one to say that one of biggest things holding Avery back is the tightness and spasticity in her ankles. She also suggested we see a specific podiatrist in NY, since he spends a lot of time watching the child's movement and function before he designs the AFOs/braces he thinks would help. The braces Avery was wearing before weren't really much better than "one-size-fits-all", all they did was take a cast of her foot and send it off to be manufactured. They were hinged, but very limited, and the last set we had caused chronic blistering. So Carla recommended that we look into going to see Dr Nuzzo about SPML, and Dr Jordan for AFO possibilities. The other surgery we have been researching is Selective Dorsal Rhizotomy (SDR), specifically the one performed by Dr Parks in St Louis. Until recently, Gabe and I have had opposing opinions - he was leaning towards the SDR, and I've been more for the SPML. 
On the internet, there is a lot more readily available information and testimonials/videos/etc about the SDR than there is about the SPML. It is frustrating, because it could very well be just better marketing. The St Louis people have done a really, really good job of putting information out there. There's a facebook group for people interested in SDR, with a lot of amazing pre- and post-op videos. Like this one. (I do not know what the privacy settings are on this video, hopefully it will let you watch it. The girl is 9 or 10, and tall and skinny like Avery, so it's easy to imagine this is what Avery could be like a couple of years from now) It is interesting too, because every single day there are families from the UK posting in the group, talking about how much money they've raised to bring their child to St Louis for the surgery. And every single parent we've found has basically said that it was the best thing they ever could have done for their child. We do not know for sure that Avery would even be a candidate for SDR, some of the contraindications are congenital hydrocephalus (according to wikipedia, but when I spoke to the lady at St Louis, I know I mentioned Avery's hydrocephalus, and she still sent me all the paperwork), damage in specific parts of the brain, dystonia, etc. So we are doing all the paperwork to at least find out if it's even an option. The following video was something we had to do for the SDR team to review: 

It was actually really fascinating for us to watch! We live with Avery every day, so of course we're quite aware of her capabilities and limitations, but actually sitting down and videoing it all like this was quite an eye opener! I was even surprised about a couple of things: how well she was able to bring each leg up into a half kneel, and how poorly she was able to move her toes and feet. We've decided that we're going to start doing one of these videos at least every six months (more often if we do either of the surgeries) as an excellent record of her progress. Plus, she is so cute in it :)
Now about the SPML. There are a lot of Drs out there who do percutaneous muscle or tendon lengthening. It is frustrating that all the available methods are known by the same acronym, PERCs, because it makes it hard to know which one people are talking about. Dr Nuzzo's method is less invasive and has better results than traditional PERCs surgery. Trouble is, he's in NJ, and not covered by our insurance. But there is a Dr Yngve in TX who does the same surgery, and is covered. Also, Dr Nuzzo and his team have not mastered the internet. His website is horrible. Details of the surgery itself is there, and that's great, but the website itself is not well designed, and is difficult to navigate. I feel that when so many of your patients are having to make long distance decisions, a well designed and informative website, complete with plenty of pre- and post-op videos, is essential. Dr Yngve's website is better, probably simply because he is part the University of Texas Medical Branch. Dr Yngve learned the method from Dr Nuzzo, and the results have been just as good. There are only a few videos on youtube.
I have been working on this post all week, so I just need to finish it. Long story short, we are still not 100% sure about what we are doing. BUT, Avery has an appointment with Dr Yngve on August 25th, and if all goes according to plan, she will be getting the SPML surgery on August 26th. IF we still think it's the right thing to do at that point. It is a hard decision to make. It was easy to agree to the surgery to place her VP shunt, because without it her chances of even surviving were minimal. This time, the outcomes are not nearly so black and white. We have been on the phone with our insurance, and the good news is that whichever one we choose, it will not be nearly as expensive as we were fearing it might be, since both would be covered. Thank you Aetna!! (It is sadly rare to be happy with health insurance!) The bad news is that in both cases, but especially the SDR, the amount of PT needed post-operatively will become rather expensive. We are trying to come up with some viable fundraising ideas.
Anyway, sorry if this has been muddled and unclear... That's sort of the way my brain is right now...!!! I will try to post again this week with some more fun and light news! Avery had her very first swimming lesson  today, and I know you'll be dying to hear about that!! It was GREAT!!!


Valerie said...

OK - so I've had a little weep over Megan's video, which wasn't exactly what I had planned for the start of my day. As you say, it seems particularly relevant because she is so like Avery in her long, tall, skinny loveliness. I'm sorry that there are so many difficult decisions to be made and especially sorry that the cost of it all has to be such a large worry. I love watching Avery's video over and over. She is so so so precious.

Valerie said...

All my love always.

Michelle said...

Have I asked this before? Does Avery qualify for Medicaid under the Disabled Child Waiver like Owen does? It's not based on income, but medical need. I ask (possibly again) because they pay for our therapies once our regular insurance stops. Anthem only pays for a small portion of the therapies that Owen actually needs, but Medicaid picks up the rest. She's so much further along mentally than Owen is, but she still qualifies as life-long care with the shunt and CP. Just a thought.

Josephine said...

Michelle, Avery does have medicaid, which has been very, very helpful! And before we started doing ABM therapy, it pretty much covered everything. However, neither of our ABM therapists are able to accept medicaid, because medicaid really only pays for large PT practices. I suppose I could actually call medicaid though, because there's always a chance that they might reimburse. Not likely, but certainly worth a shot.

Maureen said...

Josephine ...one day Avery will realise what amazing parents she has been blessed with. You and Gabe are truly inspirational. And I love you too.xx

Anonymous said...

I think your post was very clear and I thank you for it! Other parents will benefit from reading this post. And yes, I am looking forward to reading about her first swimming lesson! Barbara

Scott's mom said...

SPML surgery is something weare considering for our son, we live in Canada so it would be very expensive. SPML is so less invasive than most of the surgeries out there. That is why we are considering it. Best wishes for the surgery and please keep us posted. Thanks

Josephine said...

I will definitely keep you posted, Scott's Mom! We are going ahead with the SPML later this month, so I have been super busy fundraising to pay for it, but I need to find the time to write a blog post about it too....!

Anonymous said...

SDR and Percs is the way to go. SDR eliminates spasticity and the percs lengthens the muscles that were shortened because of the spasticity. SDR first Percs 2nd. Why do percs if spasticity is not eliminated. You will have to repeat the percs again as the spasticity remains. My daughter had SDR with Dr Park and percs with Dr Dobbs @ St Louis Children's hospital. One year later the results are outstanding.