This page contains email responses concerning scoliosis from Joyce Reeder!
My daughter is 22. Type 1 and 2. You need to have Crystal evaluated by an Orthopedic Surgeon. I'm here in Ohio. I can recommend Children's in Cincinnati and Dayton. They both have excellent Ortho departments and experience. Melissa had a fusion at 6. She had over a 100 degree curve. It was corrected to a 26 degree. She also started showing her curve at 2. Now would be the best time to get Crystal established with an Ortho. An MDA doctor will only tell you the same thing. In fact I'm surprised no one warned you about this before. Be careful of exercises. Some could do more harm then good. We have dealt with well-meaning PTs in the past, but their knowledge is very limited on this disease and it's progression. Stretching and such will not improve or slow this. As this muscles weaken they don't hold the spine in place. There is bracing that can be done to slow. But a more permanent choice will have to be made in the future. As the spine curves it will also put pressure on the lungs and diaphragm. This will cause more breathing problems. Whenever Melissa were to get pneumonia it was always in the lung that had been compressed by the spine. She also had a curve with a twist. In Dayton I would recommend Dr. James T. Lehner. He brought the Luque combined with Fusion technique here to the states from Europe. He's excellent and a wonderful bedside manner. Anyway, hope that helps. But now is the time to act. We don't see MDA doctors. They don't seem to know as much as we do. You know the ones who live with it every day. My daughter never fit into their patterns and with her age they want info from us to add to their research. So we haven't found them to be too helpful. That's just our opinion. I know other people who have been thrilled. Any other questions, I'd be glad to help. Let me know if you go to see one of the doctors here in Ohio. I could meet you there. I'm an hour from Cincinnati. In fact Melissa lives there and works at Procter and Gamble. I'm sure you would find her very encouraging. She was 2 once and I could never have imagined her at 22 and having the life she has. All from a wheelchair and dependant on home health aides. But on her own. So claim positive things! Melissa is proof it can happen. Let me know what you find out.
Thanks for letting me know about Crystal's site. It is really cute. I don't mind you using my comments. That's the one thing that helps make all of this worth it, to pass what we have learned on. I hope any of it helped. I was curious about one thing though. When Dr. Bach gave his comments about there being no way to slow the progression what was he basing that on? Almost all of the kids and parents I have dealt with over the last now 23 years have all benefited from the bracing. And it did slow their progression. If we had not braced Melissa at 2, she would have needed surgery by 3, giving the rate her curve was going. I know he deals with a lot of little ones. Does he have experience on older children. Everything I have read deals primarily with the babies. I believe in one statement I read where he said that these kids can't live into their teens. Anyway, just wondering. Thanks. Joyce
Good morning Brenda, Yeah you're right, it won't be the last battle. If that's the way that surgeon feels, get another one. If he is not convinced, he will not give you the confidence you will need to do this. He obviously has very little experience with these kids. Maybe calling another surgeon and talking to their secretary and asking if he would generally write you a letter stating his experience with these kids and fusions. Dr. Lehner's # is (937) 226-8300. ask for Dr. Lehner's office. He may be willing to just send you info. He gets really upset when docs. ignore this. Also, you don't want to wait till it is fixed. You won't get the best correction. It still needs to be flexible. I'm sorry I know you didn't ask for any more advice. This decision is hard enough to make, I want you to have a good surgeon you have total confidence in. I may still have some of the letters Dr. Lehner wrote to us on my daughters behalf. If I can find them you would be more than welcome to have those, if you think it would help. Good luck. Let me know how it goes. Joyce
Brenda, another route you may want to go is a pulmonary specialist. Since the primary complication of scoliosis is compression of the lungs. Sometimes coming in through the back door works. It just so sounds to me that these people just do not have any experience with these kids. Anyone who has been around them at all know of the complications. I have pictures of Melissa before her bracing and the curve, the bracing and the after surgery. Can you get pics. in your e-mail? Melissa's curve was at about 15 degrees at 2, we braced then. I am a firm believer that it slowed it down. We were able to put surgery off until she was 6. But once that curve starts to fall off fast it is time to consider surgery. You are right to stay on this. There is a window of time, but that can quickly change. I will contact Dr. Lehner. I won't give him any names. But I will explain the situation and pass that on to you. I'll see if I can get anything. Hang in there. I had to fight the whole Air Force. They didn't want to do it and at first wouldn't let us go to a doc. who could. My husband and I had to separate for me to get it done. But oh, was it so the right thing to do. I'll let you know when I have anything. It will probably be Monday. Joyce
Brenda, here are a couple of things to go to. http://www.cmc-dayton.org find a physician, James T. Lehner. It will let you know his credentials. They are also doing research on SMA in Cincinnati Children's. They have lots of experience. Go to some archived research or research their orthos. Also go to some Nationally known hospitals, like Johns Hopkins and also look at the Ortho dept. or their archives. This one is great. http://www.srs.org/htm/library/review/review4.htm this one discusses neuromuscular scoliosis. I think it says exactly what you need. And it gives an e-mail contact for questions. Let me know. Joyce