Well, we just got back from a trip to Texas to see Dr. Yngve at UTMB. These pics are from right after Everett got out of the hospital (the same day as the surgery) and let me tell you the first 24 hours were rough! Everett really struggled to wake up from the anesthesia and he was just cranky about everything! He had to wear those immobilizers for the first 24 hours and that was really hard because the slightest jostle would set him off screaming. Now, we only have to put on the immobilizers when he’s sleeping, so when he’s awake he only has to wear the little casts (below the knee).

Once we got him back to my cousin’s house, we sat him up in the stroller with a pillow propped under his legs but he wasn’t loving it.

He has to keep the casts (and the immobilizers when sleeping) on for four weeks, at which time he’ll be fitted for AFO’s. We got the surgery to reduce spasticity in Everett’s legs and hips – mostly because his hip was starting to dislocate. This surgery is only a teensy bit invasive when compared to what he would need if his hip did actually dislocate. It’s also a lot less invasive that the standard tendon-lengthening procedure performed for kids with CP.

Everett will need to send a hip x-ray to Dr. Yngve every year until he turns 18, to monitor the hip and make sure it isn’t starting to dislocate again. The issue is that Everett isn’t standing, so his hip socket isn’t being formed correctly. The conventional approach is to put kids like Everett into a stander to help with this, but according to ABM practitioners and our own intuition he should be crawling before we put him into an artificial and forced standing posture. We don’t want him to learn to stand with force (by tensing up his muscles), because this just increases spasticity.

I’m going to put all the information we gathered about the surgery here, in case some other families are trying to learn more about the surgery.

First of all, let me say that this surgery is extremely confusing! If you try to discuss this with any other doctors, they will think that they know what you are talking about but they probably don’t! First, it goes by the same name (SPML/Selective Percutaneous Myofascial Lengthening/Percutaneous Lengthening) as the conventional tendon-lengthening surgery (which is more invasive and actually creates worse outcomes because it forms scar tissue that ends up being tighter than the original tendon). Second, “alcohol” is very confusing because PM&R docs or neurologists use phenol (the alcoholic chemical), but Drs. Yngve and Nuzzo use ethyl alcohol, which is NOT THE SAME.

It seems that Dr. Nuzzo in NJ pioneered the surgery and he has a LOT of information about it on his website. The surgery has two parts: alcohol block and SPML. Dr. Nuzzo’s website has a page that describes the alcohol block procedure HERE.

Here is Dr. Nuzzo’s description of the alcohol block procedure:

What has alcohol got to do with internuncials? Nothing directly. But indirectly, much. Alcohol (booze, ethyl, not talking about the alcoholic chemical called phenol), when injected right on a myelinated nerve strips the fat away. It creates a bald spot in the myelin. Myelinated nerves transmit impulses much faster than unmyelinated nerves. But the bald spot acts like a speed bump in the nerve. Fast trains of impulses pile up.

Dr. Nuzzo explains, “When a muscle gets hit with a single “go”, it responds. When it gets hit with a barrage of “gogogogogogogogogogogo,” it gets thrown into tetany, a rigid, hard-to-undo contractile state. Worse, it screams for help over feedback circuits which (in spasticity) are mistakenly linked into the motor circuits by reflex spinal pathways.”

More from his site:

So when a fast train of stimuli from receptors hits the speed bump [the defatted myelin around the nerve], the internuncials don’t receive “mommymommymommymommymommy” but more like “ahem, mother…………………. if I may, mother………….”. Thus the internuncials don’t get the rapid fire background stimulus that pushes them over the edge into stimulating their neighbors and every other nerve on the block. But alcohol, used in too large a volume can cause a burning sensation if it gets to mixed nerves. You need to have the capability of exactly placing a needle directly on the target nerve so as to inject a small volume of alcohol that won’t spread too far. For that, you need special needles  attached to special electronic ‘nerve finder” circuitry. The sparky needle procedure isn’t comfortable, so, it is usually done under anesthesia. Alcohol blocks last from six months to three years. It isn’t the alcohol that “lasts,” but the repair rate of the child in fixing the speed bump caused by the alcohol. Often there is some residual long effect.

So, let’s discuss this alcohol block procedure versus Botox, the conventional treatment for spasticity in kids with CP. Typically a neurologist would administer the Botox and the child is awake (no general anesthesia is definitely a perk), with the effects wearing off in about six months. According to Dr. Nuzzo, “Advantages over Botox include low toxicity and long duration of effect to many muscles at one time. A single inject [alcohol block] may well last 18 months to two years and not require repetition.” The main benefit in my eyes is that the alcohol block helps the brain deal with spasticity; whereas Botox is neurologically confusing since the nerve/muscles disappear after the Botox is injected then start to gradually reappear. Botox can give range of motion, but I am more interested in FUNCTION than simply range of motion!! The information the brain gets from Botox doesn’t seem like it would help the brain figure anything out. I am not at all an expert, but I think that Baclofen works the same way as Botox.

Everett had the surgery less than one week ago and already his right arm, shoulder, and hand are significantly looser. So, even though his surgery didn’t touch his arm/shoulder/hand, his brain is already figuring out how to communicate with his right arm, shoulder, and hand better!!!

On Monday, just three days after the surgery, here is Everett bearing weight on a open right hand FOR THE FIRST TIME!!! He is wearing a Bamboo Brace, but it’s soft (or, in industry lingo: dynamic!).

And here he is, STANDING (bearing weight through his hips and legs, albeit leaning on the table) – FOR THE FIRST TIME EVER:

So, in addition to the alcohol block, the procedure includes SPML, which is for tendon-lengthening. See Dr. Nuzzo’s explanation page HERE. The main difference between this SPML and the conventional procedure done by most orthopedic surgeons is that instead of cutting the tendon (which produces scar tissue and leads to LESS range of motion) they leave the muscle tendon alone and just cut tiny snips into the myofascia over the muscle surface (similar to mesh skin grafting).

From Dr. Nuzzo’s website:

Selective percutaneous myofascia lengthening now seldom divides even 10% of the fascia in the limited subset of muscles selected in virgin cases. However, surgery is more extensive when scar from old standard open procedures complicates recurrent contracture. Scar from those old lengthenings is far more resistant to lengthening than the muscle contracture itself. We think that is why standard lengthenings have a much higher recurrence rate. It is the scar itself.

Another phenomenon caught our notice. There were children who had a certain degree of spasticity and difficulty walking and who were treated with standard lengthenings and who did well initially. With time, recurrence did not just lose that advantage. Certain of the children seemed to become worse than they were before their old surgery, even at less or similar degrees of contracture – worse neurologically. They seemed more spastic, more reactive, more sensitive to velocity.

Dr. Nuzzo also has a FAQ page HERE

So, if Dr. Nuzzo pioneered this procedure and has all this great info on his website, why did we go to Texas to see Dr. Yngve? Well, Dr. Nuzzo trained Dr. Yngve, so we figured he’s pretty good. =) But the main reason is that Dr. Yngve accepts the ridiculously low amount that our insurance is willing to pay! We would have had to pay between $6K and $8K out of pocket if we had gone to New Jersey. We paid $0 to see Dr. Yngve!

Again, I am posting this info because when we were seeing Everett curve his body like a C and his hips were starting to dislocate, I found it very difficult to find straight answers on all this and I was extremely frustrated talking to local doctors while trying to get the referral from my insurance company. A neurologist told me that using alcohol (he thought I was talking about phenol) was outdated and archaic. An orthopedic surgeon told me that he has done the exact same procedure on hundreds of kids with CP (but only Dr Nuzzo and Dr Yngve do this procedure based on my research). Another orthopedic surgeon told me that Everett’s hips weren’t that bad and he didn’t need any surgery at all. I guess it was a risk I was willing to take since it’s so non-invasive when compared to the surgery we would need if his hips did dislocate.

If your child has had any of the treatments discussed in this post, please leave a comment and share how it went.