My 11 year old son has recently seen a Dr. at Texas Scottish Rite Hospital in Dallas because he is starting to have some scoliosis. We go back in 3 months to see how quickly it is progressing. I guess the question in not if we will have to do surgery to correct, but when we will have to have surgery. I am interested in hearing from anyone who is going through this, or has already had the surgery

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The surgery was one of the best moves we have done for Luke. I believe it was actually harder on me than him. Luke had his surgery in late Aug after summer camp and only missed about a month of school. Our summers here in Alaska are very short and we are very active outdoors people so end of Aug was best for us and this way Luke didn't miss all of summer in bed.

The doctors kept him pain free. The recovery took about 2 and half months, we probaly watched over 50 movies. He wore his protective "turtle shell" we called it for almost a year. HMM, what else? Oh, the surgery improved all of his bodily functions and his breathing improved as well.

Anything else just ask : )
Yes, we actually went to TSRH for Joshuas surgery Hr. Ratjan was his dr and I will recommend him to anyone. He was wonderful. But be prepared you will have to have alot of tests completed first. A sleep study, breathing test, and Echo and EKG of the heart will all have to be preformed before surgery. You can feel free to talk to me via phone if you want. If you do just let me know I will provide the number.
Tanya
Hello Holly,

I first posted this on the previous PPMD Forum, yet think it sums up our experience.

My older son, Matthew, had this surgery October 2005 when he was 13. Remembering that each boy is different I wanted to offer my perspective from his experience.

He had his surgery at the Shriner’s Hospital in Springfield, MA. The orthopedic surgeon had done around 300 back surgeries on children with many disorders including DMD making my wife and me more comfortable with the decision to go ahead. The time between learning he needed surgery and the actual surgery was about six months. We took time to ask others who had the surgery about their experience to prepare ourselves.

Two weeks before surgery we had pre-op testing, blood work, Cardiac and Pulmonary Function Tests to ensure our son was as healthy as possible and the surgeon had the information if things were “less than ideal”. There is a narrow window where decreasing lung function and increasing curve reach a point where many surgeons will not do surgery. Matthew’s lung function and other tests came back fine, yet it was still quite difficult for us to know our son would be undertaking such a major surgery.

The evening before surgery we checked in to the hospital, showered and prepared him for surgery and they did more testing to be sure all was O.K. The morning of surgery was difficult for us all. We understood the gravity of the procedure, yet realized the benefits. It took about five attempts to get in his IV due to contractures and small veins with a doctor deciding to place it in his foot as they do for infants. The surgeon came in and checked Matthew over on last time and my wife and I left to wait.

The surgery lasted just over eight hours. I went running, taking my cell phone and when I returned my wife went to the gym. Taking breaks is important for your sanity. The doctor called us in a short time after a nurse told us Matthew was in recovery. He explained everything went well. Matthew’s vertebrae were not brittle making attachments more solid and there was not as much fibrosis in his back muscles making the procedure easier. Still, Matthew had two rods, six hooks and ten screws inserted. Going to see him in recovery was also hard as he was on Bi-Pap and very uncomfortable.

Over the next few days we stayed with Matthew helping the nurses move, feed and care for Matthew. He was a very compliant patient and also didn’t need near as much pain medication as most children having the same procedure. I compare this to the time he had tendon release surgery and Matthew had less pain and while it was very different in other ways he had less pain with this surgery. We had been told he would have to stay ten days to two weeks, yet because we participated in his care and as Matthew did everything asked and didn’t need high doses of pain medicine we were allowed to go home after six days.

Matthew had to wear a plastic body brace for about two months, yet he developed a rash and the surgeon said he didn’t have to wear it as the incision had healed well. He returned to school after seven weeks. We did not have any problems with him being able to sleep. He had been getting me up four to six times a night and it was no different after surgery.

I know others have had less ideal experiences, yet planning and educating yourself and your son before the surgery helps prevent anxiety and makes it easier to deal with the whole process during and after. Matthew still is able to feed himself and his Pulmonary Function Tests have not decreases over the last three years. He sits straight and is more comfortable then before the surgery. So I will end by saying the procedure was very beneficial for him.

I hope this helps.

Brian Denger
We go back to check Brice in July. Do you know the degree of curvature he has?

Shelly
Roland has a 30%.
Shelly,
How did Brice's appointment for the scoliosis? We went back yesterday and found out that Roland is going to have surgery in January. Does he see Dr. Birch?

Shelly said:
We go back to check Brice in July. Do you know the degree of curvature he has?

Shelly

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