Scoliosis

Cindy Cox (ccoxcgc@yahoo.com)- I would get a second opinion. My son is 20-years old with SMA II. He had scoliosis surgery at age 12, but never could have waited that long if we had not used methods to slow progress since he was about 3 years old.  The older the child is for surgery, the better, since they can finish growing more.  It sounds like it is not too bad for your daughter yet.  Not sure if she would even need a body jacket yet (I can't remember what Danny's curve measured when he got one), but knowledge is power for our kids so you are doing the right thing by gathering more information.  Go with your gut feeling...if you are concerned, then get a 2nd opinion...it could not hurt.


Meghan- I had spinal fusion surgery done in 1996. It is a very long, painful surgery. I won't lie about that. However, it saved my life. I had a serious S curve that would eventually have caused my body to contract together and my organs would crush one another. I had been given a life expectancy of perhaps, 10 years tops. It would have been very painful for me. At the point where I was it was august 1996. I was 15 at the time, and faced with the decision of life or death, a very complex thing for being that young (though I do know some of my friends have had this decision at an earlier time in their lives). I was blessed with the most wonderful surgeon though, Dr Richard Munk, and was operated on Dec 17, 1996 at St Vincentís Medical Center in Toledo, Ohio. There I spent 10 days, and was released on my 16th birthday. I had been told there would have been a chance I could not walk again, and I have not been able to walk since then, but there are several factors affecting this. The first being I was put on steroids for asthma at age 11 and gained a significant amount of weight. This not only made my spinal situation worse, but it also made it harder for me to walk. The other thing was, within a day I gained two and a half inches, with the straightening of said spine going from 5'0 to 5'2 1/2. I don't have any balance, and thatís something I'm still working on gaining back. I can stand over my bed, and hold myself up my upper body is still just so stiff with the rods in with the weight of my upper body I just am unable to hold it up. For a while, I thought the surgery was the wrong answer. Due to the steroids, there was skin breakdown around my lower back, and my incision opened up and became infected. I spent three months bedridden (which also didnít help my inability to walk). I was in constant pain, and I really didnít want to be where I was, I prayed every day for my suffering to end, because I wasn't sleeping, but I thank whatever (angels, god, goddess, whatever you may worship) up there for keeping me here, because after about six months, I could actually see all the improvements. My life quality is better. I sit up straighter, Im not in so much pain like I was before, and my life expectancy is much greater. Now my scenario (with the incision opening) is rare, but I tell you in my case the ending results were, for the best. Now I am just glad I've managed to get back all I could physically and I live each day knowing my future looks brighter than I would have had I not had the surgery. My asthma also improved significantly, as my airways are much more open now. I still have trouble though around allergy season. My surgeon was so great. He even made house visits as to transport me would have probably done more damage than good. The MDA was so supportive to my family. For the technical side of it all I will explain the procedure, it may not be exactly the same with each person, but I gather it is fairly close. My surgery was 14 1/2 hours long. It is a great strain on the dr as well as the patient, and the families. They put you out of course, and the patient is carefully monitored. In my case, I had cut my hair mid shoulder (as I didnít want to shave my head though they ask most boys to do that, and some girls) because they put electrodes on your head, to monitor your brain activity and waves, during the course of the surgery. They have IV's in you and I donated four pints of my own blood over the course of two months, and my family and friends were encouraged to donate blood as well. Most all of my blood was replaced (Im O+ so my mother and brother (who was 19 at the time) were able to donate) as the blood is filtered in as the blood is lost during the operation. They ask for somewhere around 8 or 9 bags of blood I believe to be safe. I was also on a heart, pulse ox monitor, and all my vital organs were watched carefully during the operation. The doctor makes an incision from the top of the neck down to the crack of your rear end, and then another through the muscle layer. Several very special metal cord type things (not sure what they are called) are carefully placed beneath the spine. There is also very careful monitoring to make sure no damage is done to the spine, as well of course. The doctors carefully use the wire to maneuver the spine into a more linear direction, they can usually get it fairly close to straight. Two metal rods are set along the sides of the spine and are screwed in around it with screws and nuts and bolts to hold the spine in place as well as wire wrapping around the rods to keep it effectively in place so it does not move. The patient is then sewn back together with dissolvable sutures. They are put on an oxygen machine. It was quite the scary sight for my parents seeing their child unable to breathe for themselves, and you swell up from fluid retention, which eventually goes down thanks to catherization. Most are put in a cast and are in it when they wake up (however I was too swollen to so I was placed in a supportive brace on my back, that could be removed) and a plaster removable brace within the sixth day which I had to wear whenever I was out of bed for six months). A steady drip of medicine keeps the patient sedated, as well as out of pain. I was on a steady morphine drip for three days and weaned off of it the fourth and given Tylenol III. I was also taken off the breathing machine (tube down my throat) after two days, which was immediately replaced by oxygen through my nose (which helped me relearn how to breath on my own). I was removed from the oxygen within day five, and breathing fine on my own. I was also uncathed within two or three days. My upper back healed beautifully and all that is left as reminder is a faint scar. I will tell you, yes there are risks to this surgery, but my doctor refused to do the surgery if I didnít agree as well. He let me in on all the decision-making. He always does that, the child and the Parent have to agree together or he won't do it (unless the child is quite young and unable to make the decision of course). It was a joint decision and let me tell you I was terrified, and I know you must be scared as well, but with everything there is a chance and if it can improve the life of your child, is taking the chance worth it? I don't know, each person is different but I hope this information explains the operation in a little more detail.


  Joyce Reeder- Almost all of the kids and parents I have dealt with over the last now 23 years have all benefitted from the bracing. Moreover, 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. Everything I have read deals primarily with the babies. This surgeon has experience with these kids and fusions. Dr. Lehnerís # is (937) 226-8300. Ask for Dr. Lehnerís office. He may be willing to just send you info. He gets really upset when doctors ignore this. In addition, you don't want to wait until it is fixed. You won't get the best correction. It still needs to be flexible. 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. In addition, it gives an e-mail contact for questions. 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 knows of the complications. I have pictures of Melissa before her bracing and the curve, the bracing and the after surgery. 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. However, 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 had to fight the whole Air Force. They didn't want to do it and at first wouldn't let us go to a doctor who could. My husband and I had to separate for me to get it done. However, oh, was it so the right thing to do.


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