SDR stands for selective dorsal rhyzotomy. In very simplistic terms, it involves accessing the spinal cord through an incision in the back and removal of at least one vertibrae (some docs remove as many as 4 or 5.....). Electrodes are attached to the muscles in the limbs both on the surface and deep down. The team stimulates muscles movement and the surgeon cuts the nerves that are sending the message to specific muscles to contract. The surgery is microsurgery. Every child is different both in terms of evaluation and prognosis, but no one in the world has done as many SDR's as Dr. Park.
My son was diagnosed by his pediatrician as having cp when he was about 13 months old, though we knew it by the time he was 9 months old. He was very mild spastic diplegia and consultations with several cp "specialists" as well as orthopedists all indicated he was "too mild" to do anything for (short of the afo's and pt he was getting). After all, he could walk and run; "...so what if he fell all the time?"... When he turned 3 years old, I couldn't help but grieve over his enlarging knees, turned in feet, constant falling, poor coordination and wonder what this would look like later on. Forgive me those who are dealing with far more significant kinds and types of cp, I'm just relating where I was with my son...
I turned to the internet and found the Center for Cerebral Palsy Spasticity in St. Louis. I called them and their pt (Joan Puglisi) was tremendously helpful in giving me an understanding of what could be done for my son.
We did a video of him doing all kinds of things and sent it to them for evaluation. In less than a week they came back very excited asking if we could bring him in to see Dr. Park. We decided to do this as her message of hope was just toooo big to resist. We live in Ohio, so going to St. Louis was not just a drive down the street...
Dr. Park met with us and described my son's next 15-20 years if we kept going "as is" -- countless orthopedic surgeries for tendons, hamstrings, knees, hips, etc... afo's for life; pt for life; ongoing issues with balance and coordination and a problem with falling for life; and the boney deformities that can't be helped as a result of all this... Then he described the surgery (a 3 hour procedure); the incision (2 inches in the spine - 1 vertibrae versus 5-6 inches for the procedure done locally and 4-5 vertibrae); the recovery (6 days in the hospital); the rehab (4 days a week PT for the first year) and the results -- NO OTHER surgeries for him EVER AGAIN; complete resolution of the balance and coordination problems; a near-normal gait; AFO's in the short term, but not for life; PT intensely in the short term, but none after 4-5 years. The decision was made for us. Bear in mind, this was my son's prognosis; it isn't every child's prognosis, but we were told that the more mild the cp, the greater the result is for a complete "recovery".
I was just so totally impressed with them that I wasn't even willing to consider another opinion. I knew I couldn't get anyone in my town as experienced as Dr. Park (close to 800 surgeries to date; doing 2-3 per week as compared with 2 a month done where I live). It helped that the hospital and Dr. Park were all "in network" so insurance applied as if I had done it down the street. The flights (even on Southwest) were easy -- even coming back with a wheelchair one week after surgery. Even being long distance, I'd do it again in a heartbeat (and may have to in fact, if my other son's prognosis [also cp] remains the same).
Sooo, we did the procedure in January, 2000; he was 3 1/2 years old. The treatment at the hospital was first class all the way. Medical management is phenomenal. He sat up on day 3 post-SDR; started PT on day 4 post SDR and was walking with a walker by day 5. He was walking unassisted by day 10 post surgery and then broke his leg in an unrelated accident. We continued therapy despite the broken leg (12 weeks in a cast).
We are 10 months SDR now and some days we cannot believe how well he is able to walk flat footed and upright. We still have rehab to do, but we are down to 2 days per week PT already. His balance is improved immeasurably, though he still falls because the muscles he's using are still building. He's still in AFO's, but they will go in the future.
The surgery isn't for everyone... It works only with spastic forms of cp. Dr. Park is able to tell by exam whether the surgery will work for a child and to what degree. The youngest child they had done last January was about 2 1/2. They reportedly don't like to do them after about age 11, but I have heard from "older" SDR patients who had him do it anyway. The younger the child, the fewer patterns they have developed and the quicker you are able to build new muscle strength and patterns. Bear in mind, "quick" is a relative term...
We searched high and low and contacted more than 40 families before making the decision to pursue the option. Most of the families had been to St. Louis, though there were also good reports from some other hospitals as well.
St. Louis has a multi-page booklet that goes into considerable detail on the procedure. They are also incredibly willing to discuss it by phone. Call Joan Puglisi (she's an incredible PT) and she'll answer any and all questions. She can be reached at 1-800-416-9956. St. Louis also has a website -- Center for Cerebral Palsy Spasticity .
It's not unusual to meet families from all over the country when you are in St. Louis. I stayed with my son in a murphy bed in his room for the week. For a hospital stay, it was pretty liveable... The team that works this procedure from Dr. Park to the PT's to the surgical team to the intensive care staff to the floor nurses all are SDR savvy and make you feel fully capable of dealing with this. My children have been in the local hospitals a few times and they aren't bad, but they could learn a lot from St. Louis Children's Hospital...
Please feel free to contact me privately; I am willing to answer any questions. People helped me a lot when I was trying to decide and I'd be happy to return the favor.