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I need help figuring out where to turn/go next.
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<blockquote data-quote="Marguerite" data-source="post: 363667" data-attributes="member: 1991"><p>I wouldn't give up on Duke necessarily. Their apparent disbelief could also be "Wow, we can't even see te evidence of past work on his body any more." But not necessarily disbelieving you. Or even if they were - stick around. It's when you walk away that they never learn they were wrong, and continue with the arrogant attitude that got them out of a challenging patient last time.</p><p></p><p>The records have to be there. Also his previous doctor is there, even if he's not doing shoulders any more. So I would persist and make it clear- if they can't find his files, they have to admit his files are there somewhere. And in the meantime, you have some information plus there is a doctor who may have some recall of what he did from memory. The thing is - he is in pain, he is suffering, he needs help. Surgery done when very young does tend to heal amazingly well. I've heard where babies with mild/low spina bifida can be operated on in utero, and later in life they can't find any scars.</p><p></p><p>Another button to push - there could be a research paper in this case. A chance to write it up and get some recognition in the peer journals.</p><p></p><p>But if you need to move on, only do it after you've really tried to educate these guys. Because every time you move on, you have to start the whole education/information thing form scratch. And if a place like Duke are behaving this way, don't expect other places to necessarily be any better.</p><p></p><p>It's going to take patience and effort on your part. it shouldn't, it's not fair, but Cory needs help so you take the crud you have to take, in order to get him the help.</p><p></p><p>Touching toes at 23 - he shouldn't be able to do this well by now. Although his range of movement may well be more limited than it should be. But we get misled by various physical fitness videos in the things we're made to feel guilty about not being able to do. But we learned this one from husband's doctor - because husband CAN touch his toes, and the doctor said, "Being able to do this at your age is bad. It is just one more bit of evidence that your joints are too loose and this is causing osteoarthritis." difficult child 1 can also still touch his toes and again, the doctor says it's a concern. This doctor is a rheumatologist. Being able to reach down a long way - yep, we need to do that. But not actually touch the floor, not once we're adults. Unless we happen to be very long in the limbs.</p><p>I'm very flexible (especially for my age) but because I'm long in the torso and short in the limbs, I haven't been able to touch my toes since I was about 14 years old.</p><p></p><p>I hope you can get some help for him. What about getting him into a pain clinic at least, for now? He needs to get his pain under control fairly quickly, it sounds to me. Then let the other doctors get their act together, while Cory at least has less pain to put up with in the meantime.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 363667, member: 1991"] I wouldn't give up on Duke necessarily. Their apparent disbelief could also be "Wow, we can't even see te evidence of past work on his body any more." But not necessarily disbelieving you. Or even if they were - stick around. It's when you walk away that they never learn they were wrong, and continue with the arrogant attitude that got them out of a challenging patient last time. The records have to be there. Also his previous doctor is there, even if he's not doing shoulders any more. So I would persist and make it clear- if they can't find his files, they have to admit his files are there somewhere. And in the meantime, you have some information plus there is a doctor who may have some recall of what he did from memory. The thing is - he is in pain, he is suffering, he needs help. Surgery done when very young does tend to heal amazingly well. I've heard where babies with mild/low spina bifida can be operated on in utero, and later in life they can't find any scars. Another button to push - there could be a research paper in this case. A chance to write it up and get some recognition in the peer journals. But if you need to move on, only do it after you've really tried to educate these guys. Because every time you move on, you have to start the whole education/information thing form scratch. And if a place like Duke are behaving this way, don't expect other places to necessarily be any better. It's going to take patience and effort on your part. it shouldn't, it's not fair, but Cory needs help so you take the crud you have to take, in order to get him the help. Touching toes at 23 - he shouldn't be able to do this well by now. Although his range of movement may well be more limited than it should be. But we get misled by various physical fitness videos in the things we're made to feel guilty about not being able to do. But we learned this one from husband's doctor - because husband CAN touch his toes, and the doctor said, "Being able to do this at your age is bad. It is just one more bit of evidence that your joints are too loose and this is causing osteoarthritis." difficult child 1 can also still touch his toes and again, the doctor says it's a concern. This doctor is a rheumatologist. Being able to reach down a long way - yep, we need to do that. But not actually touch the floor, not once we're adults. Unless we happen to be very long in the limbs. I'm very flexible (especially for my age) but because I'm long in the torso and short in the limbs, I haven't been able to touch my toes since I was about 14 years old. I hope you can get some help for him. What about getting him into a pain clinic at least, for now? He needs to get his pain under control fairly quickly, it sounds to me. Then let the other doctors get their act together, while Cory at least has less pain to put up with in the meantime. Marg [/QUOTE]
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