I keep telling my family that I can’t wait until I’m 33 years old.
And it has nothing to do with it being referred to as your “Jesus Year” in some circles.
I can’t wait because I’ll be able to say “My SDR was 30 years ago.” For one thing it makes the math easier for me and the resident(s).
Because when I give them the year I had my SDR or how old I was when I had it a look comes over their face like I’ve just asked, “Train A, traveling 70 miles per hour (mph), leaves Westford heading toward Eastford, 260 miles away. At the same time Train B, traveling 60 mph, leaves Eastford heading toward Westford. When do the two trains meet? How far from each city do they meet?”
I should also tell you that I often have to then explain what an SDR (short for Selective Dorsal Rhizotomy) is because they aren’t as popular as they used to be (due in part to the Intrathecal Baclofen Pump, I think). It’s funny because I didn’t know what it was for a long time, even thought I had it done, so I’ve had to educate myself because I realized I had to educate others. I even have a short description of every surgery I’ve had with my list of pervious surgeries. 1) To give people a heads up while they’re reviewing my records before an appointment. 2) I can’t spell Rhizotomy (neither can spell check).
I have mixed feeling about getting old, but this is one thing I’m looking forward to more than others.
Andi at Bringing the Sunshine shared her thoughts about SDR some 10 years later. I wondered if people would be interested in thoughts from someone who had the same procedure almost 30 years later. Andi’s answer was a resounding “yes” so I’m taking that as a sign that others might be interested as well.
Here are some basics:
-How old were you when you had it done? I was 3. I remember it being around Halloween because my grandma decorated my room which included a very large, to a 3-year-old, Happy Halloween banner.
-What was she able to do/not do before/after? I don’t remember much about that but the surgeon who performed my surgery told me that he got a call from my mom once I was home asking what he had done because she found me either sitting on top of our piano or I had something in my hands that was previously on top of the piano and when she asked me about it my answer was “I climbed.” My surgeon told my mom, “Well you have a climber now.” So I could climb things and get into trouble, like most 3 year olds.
-Where was it done/who did it? Why did you go there instead of (fill in the blank)? It was done at local hospital by a surgeon (who will remain nameless because I didn’t clear mentioning him beforehand) who came from NYU after training with Dr. Park and/or Dr. Peacock. We didn’t go anywhere else because it was the best fit for me and my family.
-What was the recovery like? Honestly? Confusing. I was told I was getting “new legs” so when I looked down and saw my “old legs” still attached, because who wouldn’t want to see what new legs on your body looked like, I was confused. I was even more confused when people would come to visit and look at my back (especially my cousins who are roughly my age). I remember asking why people kept looking at my back and then reaching over and feeling large plastic things coming out of my back. I remember wondering if I looked like a Stegosaurus because they felt like scales. My mom told me I had staples in my back and she says when she saw how wide my eyes got she realized that maybe someone should’ve mentioned that surgery was going to be on my back and not actually on my legs. I stayed in the hospital for what felt like a long time, but was probably more like a week.
-How much physical therapy rehab was required? What did they do? I had PT Monday-Friday for a year at the outpatient facility associated with the hospital where my SDR was done, as well as a home program. I had OT as well but I don’t think it was as intense as PT. I don’t remember anything in particular that stands out from that time, balance work, coordination exercises; basically I had to relearn how to my body worked because things were so different. Once the post-operative obligations and goals were met I went back to my normal PT routine of twice a week at a private PT practice closer to home.
-How quickly did you see a difference? Honestly I can’t remember much of that other than people telling me I looked “good” or “better” which can be taken in a host of ways even when you’re 3. I do remember the first time I stood up and saying that my legs felt like Jell-O would be a bit of an understatement.
-Did your insurance cover it? Yes, but in order to do so my parents had to sign agreements that they would be committed to the recovery plan and I’m sure a few other things in order for it to be covered.
What I Thought I Knew Then:
I thought I was getting new legs, literally. It’s kind of weird how comfortable I was with the idea of having a different set of legs attached to my body. I mean, I didn’t wonder where they were going to get the new legs from?
My new doctor was the one making the decisions. I didn’t realize the decisions my parents had to make prior to having surgery. I thought everyone was in agreement. I didn’t learn until recently that that wasn’t exactly the case.
My dad, and maybe my mom, thought I would need any other surgeries in the future. I don’t think the thought ever crossed my mind, for whatever reason. I had two other major surgeries, at age 12 and then again at 24. I’ve known people who have had more than 2 surgeries after SDR & I’ve known people who have had none after. With CP you can never say never, growth spurts can be detrimental.
I thought what was done was done. My SDR left me with decreased sensation in my legs and toes and some decreased or no movement particularly in my feet and toes. After my last surgery (fall ’09) I began having some feeling in my thighs and just last year I started to experience intermittent sensation in some of my toes. I don’t know how this happened or how common it is but it’s been interesting to say the least.
I thought everyone knew what was happening. It wasn’t until people with cameras started taking pictures of me during PT and asking my mom questions that I wondered what the big deal was. What I didn’t know then was that SDR was relatively new and I was the 1st patent in the state to undergo SDR surgery.
What I See In Retrospect 30 Years Later:
Would I have it done if it were my choice. I have no idea. I’d like to say “Yes” because I know my life would be drastically different if it weren’t for Dr. L. I no longer see him on a regular basis but he’s always been there if I needed his advice, like the decision to have Botox injections or what to do when I wouldn’t feel my left arm for a week during college. But in the last few years I’ve really started to question and think about what my life might’ve looked like if I hadn’t had an SDR. I don’t hold any bad feelings towards anyone but I do wonder, especially since my SDR was more extensive (from L1-S2) than what’s being done now.
I wouldn’t be as independent as I am now without it. Yes, I use a wheelchair on occasion for mobility but I probably would be a full time wheelchair user without it, and would probably need to rely on others more for care. In my opinion people focus too much on the ability to walk after SDR. Walking in itself does not make a life more meaningful. As I’ve said before and I’ll say it again, using a wheelchair has opened up my world more than it would be if I used crutches or used no mobility aids at all.
So there you have it, my SDR experience decades after the fact, but if I’ve missed something you’re curious about let me know.