Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Joyce, Thank you so much for sharing with me. I enjoyed the long post. Feel like I know you better than a one liner. Cam said to me in a post today that she used this site to journal her feelings and experiences - how wonderful we have each other. I have been praying, minute by minute. It's the only way for me to get through. I am thankful for your prayers as well. Did you have revision surgery? If so, how long ago? How are you feeling now? Are you pain free? What a blessing the new bone graft doesn't hurt. I had bone taken from the front of my hip for neck fusion as well and it hurt for about a day and has never bothered me since. But this back of the hip thing for the scoliosis is a real problem. No children, husband at work and unable to drive. I hear your lonliness and understand it fully. We need to hear from you more often! Do you have any hobbies at home? Sending you a hug - Alpine -- In , " joyce edmonds " <bichon4me@...> wrote: > > Alpine, > I have a lot of pain and burning in my left hip from the bone graft site of a surgery in 1988. The bone was taken to place in my neck at C1-C2 so the pain has nothing to do with scoliosis or flatback surgery. > > In 2004 when I found out I needed surgery for scoliosis I was not a happy camper when Dr Lenke said he was going to take bone from my right hip. I voiced my concern but he brushed it off saying that at least my pain would be distributed. I don't think he realized the magnitude of my pain. He did take bone from my right hip and I have not had any pain what so ever from it. > > I just read your post of how depressing it can be when you are home alone with your thoughts. I don't have any children, my husband works and I can't drive at the present time. It's not fun, especially when you are limited with how much time you are allowed to sit at your computer without making your back and hip pain unbearable. This is the first post I have made to the group in over a month but I just wanted to tell you that taking bone from the hip doesn't necessarily mean you will have pain from it. > > You wanted suggestions for easing the pain. My doctor had me on Neurontin until the first of this month (I'm not sure if it helped) at which time he switched me to a new drug called Lyrica. I think it is helping but I have dozed off 3 times while typing this post. One of the side effects. > > I know your surgery is right around the corner and I know you are scared out of your wits but, for me, the closer the time came the calmer I got. Just pray about it and I will pray for you. > > I'm sorry for the long post but I feel like I was just released from my cage. > > Joyce E > > > [ ] Question about bone harvesting > > > I was wondering if any of you have pain from the bone harvesting from > your original harrington rod procedures. 21 years out I still have so > much pain from the bone graph site in my lower left hip in the back. > My curve was low enough in my back that Dr. Dawson was able to take > bone out of my backside instead of the front of my hip. Dr. LaGrone > said that there is nothing he can do for this pain. Is anyone > suffering from this? Does anyone have suggestions on how to ease this > pain? Dr. LaGrone also said that he would use cadaver bone for the > revision surgery. Is there any concern about contracting disease? > Does anyone know how this cadaver bone is cleaned/prepared before it's > inserted into our backs? > > > > > > scoliosis veterans * flatback sufferers * revision candidates > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 I think the study that showed no pain from the bone graft site after one year just didn't look at patients far enough out Even though I had surgically induced flatback since the time of my original surgery in 1973, I really did not start having much pain until 20 years later. And where did the pain start? Right under the scar on my hip where they harvested the bone. When I saw Dr Sachs at the Texas Back Institute (the only doctor I have seen who seemed to know what he was looking at -- or at least the only one who would be honest with me), he said it was hard to tell from my xrays exactly what was causing the pain. I definitely got the impression that pain at the site of the bone harvesting would not be that unusual. But, I have the bizarre third rod that ends very near there, and the SI joints were named as a third possibility for the cause of my pain. I think that is why SI joint injections were his next step in the diagnosis process. Unfortunately, it took me about a year to find a local doctor to do the injections and to get the MRI and bone tests, and by then, my insurance had changed and won't pay for me to go out of state. My pain management guy said that he thinks the end of that third rod is part of my pain, so he injects some of the numbing stuff there as well as in my SI joints and the L4, L5, and S1 nerve roots. What seems odd to me is that I assumed the SI joints were the crack looking things in the pelvis near the end of my rod, but now I am having pain on the right side, and the doctor said that is SI joint pain and it is closer to my spine. The pain on the left is more like halfway between my spine and my side (and under the scar). All I know for sure, is that Dr Eckman injected some dye into my SI joints to see if they were fused because from the xray he thought they might be, but they are not. He also thinks that I am not fused all the way to S1, which I had thought I was. He agreed that it would have made sense since my rods go all the way down, but is not sure if it just didn't fuse properly or if they were left unfused on purpose. I do know that pseudarthrosis was mentioned by my original doctor when I got my first disability parking permit back in 1974. Whether it was at the bottom of my fusion, or closer to the area where the rod is broken, I don't know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Alpine, You asked if I had revision surgery. No, I had my first scoliosis surgery in July and August of 2004. I am not pain free but all of my pain is from the neck surgery I had in 1988. I had a lot of nerve damage and also a stroke on the operating table. My left side is weak. In 2003 I developed Charcot's Joint in my right shoulder and have limited strength in that arm. That is when I had to give up driving. I know what I need to drive again I just can't find anyone to do it. Not that I have put forth a whole lot of effort to find that someone. It is called "effortless steering." When the weather gets warmer I'll see what car dealerships can do for me. You take care and I hope you find an inner peace about your upcoming surgery. Joyce E [ ] Question about bone harvesting> > > I was wondering if any of you have pain from the bone harvesting from > your original harrington rod procedures. 21 years out I still have so > much pain from the bone graph site in my lower left hip in the back. > My curve was low enough in my back that Dr. Dawson was able to take > bone out of my backside instead of the front of my hip. Dr. LaGrone > said that there is nothing he can do for this pain. Is anyone > suffering from this? Does anyone have suggestions on how to ease this > pain? Dr. LaGrone also said that he would use cadaver bone for the > revision surgery. Is there any concern about contracting disease? > Does anyone know how this cadaver bone is cleaned/prepared before it's > inserted into our backs? > > > > > > scoliosis veterans * flatback sufferers * revision candidates > > > > Quote Link to comment Share on other sites More sharing options...
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