Sarah Kate has been to LOTS of specialist appointments in the past year or so, and each time we went I would get all nervous and worried. Each time, however, we basically just heard what we already knew and I finally began to accept that not much can be done for her other that the physical therapy that we're already doing. I haven't even asked Scott to go the past several times, because these appointments are endless and I hate to make him take a day off of work (and it's always a whole day ordeal) to go. Instead, I have taken other support folks - my dad (Allen) and my stepmom (Betty), who live in the hospital's metro area, a few times and my friend (Jana Lites), once, who is just a really, really nice person (I can't think of any other reason in the world why she would have gone!).
When we made the appointment for Spasticity Clinic, I was hopeful but doubtful that things would be different. Spasticity Clinic is an office visit where you "get to" see four specialists on the same day - orthopedic surgeon, neurosurgeon, physiatrist (rehab medicine doctor), and physical therapist. They come in one at a time, but after they've all seen the patient, they get together and hash out amongst themselves what they think should be done, if anything, and report back. If anyone dissented from the recommendation (which they say pretty much is always the case), then they'll tell you the dissenting person's opinion, as well. One huge benefit I saw of going to spasticity clinic is that these specialists would actually TALK to each other, a rarity from what I've seen.
When Sarah Kate and I showed up for her appointment, we had my dad and stepmom in tow. My dad went back with us, and we went through the whole routine with each of the specialists. I'm one of those obsessive-about-information types, so I'm using the medical jargon - "grade 1 IVH" and "spasticity" and "no cognitive delays," blah, blah, blah. The neurosurgeon, Dr. Oakes, even teased me a little about the lingo and asked me what I thought they were going to recommend for Sarah Kate, which made me a little nervous because I didn't want to seem difficult. The nurse clinician told me later, though, that he likes parents like me (hope that's true!)After they all left, my analytical mind started to work. I figured that we'd pretty much know what the recommendation was based on who came back to talk to us. Orthopedic surgeon = muscle/tendon surgery, physiatrist = Botox and/or casting, physical therapist = status quo with maybe a change in her braces, and neurosurgeon = spinal cord surgery (SDR). I was right up to a point - typically that's how it works, but Dr. Oakes (the neurosurgeon) needed to talk more in-depth with another family that morning, so he sent Dr. Law (physiatrist) with the news instead. Although Dr. Law doesn't operate, he is highly involved with SDR surgery, so he was sent in to talk with us (although we were welcome to wait to speak with Dr. Oakes if we wished).
The recommendation was for Sarah Kate to undergo what is called a Selective Dorsal Rhizotomy (SDR).So what is SDR, anyway? In a nutshell, they will go into her spinal cord and determine which nerves are "misfiring" and causing the spasticity. They will permanently cut the rootlets of those nerves, which will reduce the spasticity (and it should not ever return). The surgery will take 4-6 hours and she will be hospitalized for about 5 days. Following the surgery, she will have intensive physical therapy daily for about a year. Most functional gains that she will be able to achieve will occur within that first year. Although a wonderful benefit of the surgery is increased physical capabilities, just as important is the fact that reducing the spasticity will prevent a lot of problems in the future, such as physical deformities, that would require additional surgeries/treatments, and pain caused by the spasticity as she gets older. The ideal time period for this surgery is between 2-1/2 and 4 years of age, because after age 4, motor patterns in the brain are deeply ingrained and harder to change.
I was completely shocked at the recommendation. I had been reading a great deal about it in the months leading up to the appointment, and it sounded very promising, but I hadn't really been able to find anyone who knew of a child like Sarah Kate having been recommended for the surgery. Most people that I talked to only knew of more involved kids having the surgery. Of course, I have also found that Sarah Kate is unique. Her CP only affects her legs - she has no cognitive, speech, social, or fine motor delays, which is apparently pretty rare. She's also tough as nails and very driven - one of her therapists even said one day that she really does her own therapy. I had hoped in the back of my mind that she would be a candidate for SDR, but I just didn't think it would happen. I was shocked and thrilled and terrified. The recommendation was also unanimous, which is apparently pretty rare, as well.
Now the deliberation begins...
