Difficult Decisions

We had to make one of the hardest decisions yet for Solly recently. We opted for Solly to have a (non-invasive, preventative) surgery.

It was one of those decisions where I was constantly questioning myself, I felt others questioning my decision, and I didn’t have complete support from Solomon’s doctors. In other words, it was a completely agonizing decision. But, through the entire decision-making process, I felt my gut telling me that I was right, we were doing the right thing, and in the end, we had proof that we made the right decision.

Let me back up…

The Backstory & Consultation

Back in February, we were at an Anat Baniel Method intensive. Our practitioner asked us if we’d heard of the procedure ‘SPML’, thinking it could be something that might help Solly. She gave us the contact information for the two (!) doctors that perform the procedure in the United States and encouraged us to contact them to see if Solly might be a candidate.

We went home and did a little research and found out that ‘SPML’ stands for Selective Percutaneous Myofascial Lengthening. It’s a non-traditional, non-invasive procedure that releases the connective tissues surrounding the muscles. The surgeon uses what is essentially a needle to poke holes in the tissue. No cutting of muscles or ligaments is involved, so recovery is typically quick. (Click here for a more in depth conversation about SPML.) Mike and I saw before-and-after videos of children with stiff muscles who gained the ability to move freely after surgery. We knew Solly needed a chance of that same freedom of movement: a consultation with one of these doctors seemed like a no-brainer.

The two doctors who perform this procedure are Dr. Nuzzo in Summit, New Jersey and Dr. Yngve in Galveston, Texas. We chose to consult with Dr. Nuzzo because he was the one who developed this procedure as well as several other preventative surgeries to help children with cerebral palsy. We sent in the required spine and hip x-rays as well as a few videos to show Solly’s range of motion and movement patterns. Here’s one video that shows the level of tightness in Solly’s legs:

Within the week, we received a response directly from Dr. Nuzzo, who said that not only was Solly “mummy bound” and “in paralytic jail”, but the tightness in his legs was pulling his left hip out of the socket, potentially damaging the left hip socket. He recommended quick action to avoid further dislocation, suggesting that we not only do SPML to get him out of paralytic jail, but also do an additional surgery called SLOB (Supero Lateral Outcropping Bone-graft) which would essentially extend his hip socket to keep the ball of the hip in place. It was a more invasive surgery than SPML and recovery would include several months in a custom, removable hip brace. (Another Mom has written extensively about her daughter’s SLOB procedure, which you can read here.)

At only 7 months old, Solly’s left leg was already pulling inwards and scissoring

Neither suggestion surprised us. In fact, we’d noticed Solly’s left leg scissoring since he was only a few months old. In recent days, even with the improvements we saw with HBOT, Solly’s legs had been getting tighter and tighter, and with our developmental pediatrician, we’ve been monitoring his left hip over the past year. Both of these developments – spasticity and hip dysplasia – are very common in children with cerebral palsy. The traditional treatment plan includes ongoing botox injections to loosen the muscles – these injections typically only last 3 months and can be painful to get – until therapy develops correct movement patterns to stabilize the hip or until a very invasive VRO (Hip Varus Osteotomy) surgery is needed. The VRO is a nasty surgery where the leg bone is cut and repositioned into the hip socket. Recovery includes an almost full body cast for 8+ weeks and because the surgery actually shortens the leg, often both legs are done at the same time. Recovery is long and painful. This is something we never want Solly to have to go through.

Dr. Nuzzo’s approach not only prevents the need for VRO surgery, but it can increase range of motion and give children a chance to develop better movement patterns so future surgical intervention is at a minimum. While Solly’s doctors wanted him on the path of Botox injections and eventual VRO surgery, we opted to follow Dr. Nuzzo’s advice and scheduled him for SPML and SLOB surgery on June 6th.

The Surgery

A mere week after we came home from Solly’s HBOT treatments, Mike, Solly, Bea, and I boarded a plane for New Jersey where we planned to reside for 9 days. We had a pre-operative appointment scheduled for the day before surgery and expected Solly to remain in the hospital for 3 to 5 days after the procedure to recover. Though we were nervous to have this procedure done, when we met Dr. Nuzzo in person, those nerves quickly subsided as we met a very optimistic doctor whose philosophy was to do as much preventative work as possible for children with cerebral palsy.

Snuggling with Dad in the pre-op area

On June 6th, Solly’s surgery was set for 1pm. After we were escorted back to the pre-op area, Dr. Nuzzo met us and explained that once Solly was under anesthesia, he would do a series of x-rays to confirm his hip position and then perform the SPML procedure. After that, he would take another set of x-rays to see how SPML affected his hips before proceeding onto SLOB. The combined procedures were expected to take about 3 hours, but Dr. Nuzzo advised us to stick around incase he needed to give us any updates. I carried Sol to the operating room where a team of nurses and the anesthesiologist were waiting, and I was able to hold his hand and talk to him while the anesthesiologist put him under.

Then it was a waiting game.

Mike ran back to the hotel to check on Bea who was getting in some quality time with Mike’s parents. (Thank you Bebe and Gramps for flying up to help us!) I stayed in the hospital waiting room and after what seemed like two million years – but was probably only about 45 minutes – the nurse overseeing the waiting area called me up to her desk. Dr. Nuzzo was on the phone.

Struggling to wake up from the anesthesia

He said to me, “Well, this is unexpected, but I did the SPML procedure, and Solly’s hip popped back into place. It’s in there snug enough that I’d like to stop here, try putting him in a brace for a few months, and see if we can’t get it to stay there without further surgical intervention.”

Holy cow, we were ecstatic! We hadn’t even considered this possibility and were thrilled that Sol didn’t need an invasive surgery.

The Aftermath

Once we got home, we didn’t push Sol to do any physical therapy for a couple of weeks while he recovered. At Dr. Nuzzo’s suggestion, we got him into hippotherapy and focused our efforts there as well as in ABM intensives.

We are now 5 weeks past the surgery, and the results have been better than we could have ever imagined. Before surgery, Sol couldn’t stand at all, let alone take steps. If we were to put him in his walker, his legs would stiffen to the point where it was hard for us to move them. We had started to lose hope that we could find a way to help him. Now, when in his AFOs and hip brace, Solly can stand and balance himself as he holds on to something. Here’s a short video of him standing in a train at the zoo, taken just a couple of weeks after surgery:

And in the past ten days or so, he even started taking steps in his KidWalk walker:

Next, we’ll take him to a weeklong Therasuit Intensive Therapy at the Full Circle Therapy Center. We hope this therapy will continue to help him recover and thrive after SPML.