Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 , I don't know why they say it's too hard to measure if the cast is on. You get the same quality of x-ray with or without the cast on. I know at Erie they always measure RVAD with the cast on. I don't know what to say other than, I also feel frastrated for you here in the US. I want to get the BEST treatment available, and wish all these orthos. would wake up. Have you ever thought about coming to the us for casting? Know that we are thinking of you. /Cole moniquetiagarcia <moniquetiagarcia@...> wrote: Hi everyone again, it's from Australia. Last night I emailed the London Orthopedic surgeon for s RVAD measurements from his last two casts. He told me it was too difficult to measure with he cast on. That was his answer. I'm sorry, but doesn't that mean he is flying blind, not knowing how the rotation is being affected?! I also expressed my concern on the loose cast, which for some reason tonight is much tighter, and he said it must be that has lost weight. I asked if I should get an x-ray and he agreed this would be a good idea. Australia do not measure in RVAD either. They see it as a guideline only. Why are these people so completely blind? Honestly, I am furious yet feel so helpless. It may take some time, but eventually they are going to have to recognise the early treatment process as a superior treatment and will have no choice but to provide it here. Take care everyone. --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Lets try and get you and to the U.S. for treatment. Have you been in contact with Shellie? Let me know how we can help. HRH IT GETS WORSE Hi everyone again, it's from Australia. Last night I emailed the London Orthopedic surgeon for s RVAD measurements from his last two casts. He told me it was too difficult to measure with he cast on. That was his answer. I'm sorry, but doesn't that mean he is flying blind, not knowing how the rotation is being affected?! I also expressed my concern on the loose cast, which for some reason tonight is much tighter, and he said it must be that has lost weight. I asked if I should get an x-ray and he agreed this would be a good idea. Australia do not measure in RVAD either. They see it as a guideline only. Why are these people so completely blind? Honestly, I am furious yet feel so helpless. It may take some time, but eventually they are going to have to recognise the early treatment process as a superior treatment and will have no choice but to provide it here. Take care everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Yes, I think we are going to come to America. of all the days for my computer to crash, it was yesterday. , I read Moriahs story and understand she also has a heart condition. Can you tell me about the facilities in Denver childrens hospital and maybe tell me who I should contact cardioligy wise? You can email me direct on briangchef@... I have been flat out orginising things here. , there is something I need to find out. I know I need a lot of money in the bank if I am coming over for medical treatment for . I remember being told I need like hundreds of thousands of dollars, is that right? I am seeing s cardiologist tomorrow, so will ask him, I remember him saying America was full on with their insurance, and would be high risk with his heart condition, so he advised London. However, after Mr Noordeen told me he doesn't measure the RVAD, I just lost it and went " no matter what it takes, this kid is getting the right treatment " , so we are quite willing to sell our house, a small sacrifice, does anyone have any idea? Bert, did you get my email? Anyway, Shellie, hope to hear from you soon. infantile scoliosis treatment , " heather hyatt " <heather@...> wrote: > > Lets try and get you and to the U.S. for treatment. > Have you been in contact with Shellie? > > Let me know how we can help. > > HRH > IT GETS WORSE > > > Hi everyone again, it's from Australia. > > Last night I emailed the London Orthopedic surgeon for s RVAD > measurements from his last two casts. > > He told me it was too difficult to measure with he cast on. That was > his answer. I'm sorry, but doesn't that mean he is flying blind, > not knowing how the rotation is being affected?! > > I also expressed my concern on the loose cast, which for some reason > tonight is much tighter, and he said it must be that has lost > weight. I asked if I should get an x-ray and he agreed this would be > a good idea. > > Australia do not measure in RVAD either. They see it as a guideline > only. Why are these people so completely blind? > > Honestly, I am furious yet feel so helpless. It may take some time, > but eventually they are going to have to recognise the early > treatment process as a superior treatment and will have no choice > but to provide it here. > > Take care everyone. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Thankyou so much , I could feel the sincerity in your email. God, I am so frustrated it has reduced me to tears. I mean, I have dealt with worst case, is on palliative care due to his heart condtition. (although the oldest survivor lives in the US and is in her 20s) I dealt with those fears a long time ago. This time, I am fighting through red tape and egos, and I am fighting with everything I have, but it isn't good enough. Time is ticking for , and these people are literally messing around with it. I asked the plaster technician (in London) why the ortho in london keeps telling me to come back in 6 months and not three, even though I didn't listen and went back in three, and she just said it without thinking. She said.... " Because he doesn't want to do it " and there is the answer. She then tried to explain herself, but her first response was so clear. Poor little is the only loser. You are right , they are going to have to listen eventually. Take care, Hi everyone again, it's from Australia. > > Last night I emailed the London Orthopedic surgeon for s RVAD > measurements from his last two casts. > > He told me it was too difficult to measure with he cast on. That was > his answer. I'm sorry, but doesn't that mean he is flying blind, > not knowing how the rotation is being affected?! > > I also expressed my concern on the loose cast, which for some reason > tonight is much tighter, and he said it must be that has lost > weight. I asked if I should get an x-ray and he agreed this would be > a good idea. > > Australia do not measure in RVAD either. They see it as a guideline > only. Why are these people so completely blind? > > Honestly, I am furious yet feel so helpless. It may take some time, > but eventually they are going to have to recognise the early > treatment process as a superior treatment and will have no choice > but to provide it here. > > Take care everyone. > > > > > > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Hi I'm afraid I don't have much advice to offer, but I want you to know that you, and all your family are in our thoughts. I can't begin to imagine what you are going thru - My heart goes out to you, and how frustrated you must feel. We tried to persuade my daughter's ortho here in Canada to cast Siobhan when she was four yrs old - He refused! Saying that we should " humour him " , and that he wouldn't consider casting her until her curve was 60 - 80 degree's!!!!!!! (It was 45*). We were lucky enough to get an appointment with Dr D'Astous at the Shriner's in Salt Lake City - He is now Siobhan's doctor, and we LOVE him! We knew casting wouldn't be a long term " cure " for Siobhan - Which is why I haven't written earlier, with a testomonial for your Australian Orthos. But it got us a couple more years of important growth - Which is what we were looking for all along - Until something better (than permanent fusion) came along. Siobhan now has the VEPTR (first patient at The Shriner's in Salt Lake), and is doing wonderfully. Hopefully when Bert returns from her family holiday, she can offer more help??? Hugs to you and . Jacki > > > > Lets try and get you and to the U.S. for treatment. > > Have you been in contact with Shellie? > > > > Let me know how we can help. > > > > HRH > > IT GETS WORSE > > > > > > Hi everyone again, it's from Australia. > > > > Last night I emailed the London Orthopedic surgeon for s > RVAD > > measurements from his last two casts. > > > > He told me it was too difficult to measure with he cast on. That > was > > his answer. I'm sorry, but doesn't that mean he is flying blind, > > not knowing how the rotation is being affected?! > > > > I also expressed my concern on the loose cast, which for some > reason > > tonight is much tighter, and he said it must be that has > lost > > weight. I asked if I should get an x-ray and he agreed this > would be > > a good idea. > > > > Australia do not measure in RVAD either. They see it as a > guideline > > only. Why are these people so completely blind? > > > > Honestly, I am furious yet feel so helpless. It may take some > time, > > but eventually they are going to have to recognise the early > > treatment process as a superior treatment and will have no > choice > > but to provide it here. > > > > Take care everyone. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 , I will get Dr. e's info to you in a separate email soon. I will get it looked up. You might research which insurances accept new applicants with pre-existing conditions. We have switched a few times with my husband's employer. So far Aetna U.S. Healthcare and Wellmark Blue Cross Blue Shield of Iowa have accepted Moriah with her pre-existing heart and spine diagnoses. I'm glad you got to read her story. When I email you off group I'll include my phone number as well. Shellie moniquetiagarcia <moniquetiagarcia@...> wrote: Yes, I think we are going to come to America. of all the days for my computer to crash, it was yesterday. , I read Moriahs story and understand she also has a heart condition. Can you tell me about the facilities in Denver childrens hospital and maybe tell me who I should contact cardioligy wise? You can email me direct on briangchef@... I have been flat out orginising things here. , there is something I need to find out. I know I need a lot of money in the bank if I am coming over for medical treatment for . I remember being told I need like hundreds of thousands of dollars, is that right? I am seeing s cardiologist tomorrow, so will ask him, I remember him saying America was full on with their insurance, and would be high risk with his heart condition, so he advised London. However, after Mr Noordeen told me he doesn't measure the RVAD, I just lost it and went " no matter what it takes, this kid is getting the right treatment " , so we are quite willing to sell our house, a small sacrifice, does anyone have any idea? Bert, did you get my email? Anyway, Shellie, hope to hear from you soon. infantile scoliosis treatment , " heather hyatt " <heather@...> wrote: > > Lets try and get you and to the U.S. for treatment. > Have you been in contact with Shellie? > > Let me know how we can help. > > HRH > IT GETS WORSE > > > Hi everyone again, it's from Australia. > > Last night I emailed the London Orthopedic surgeon for s RVAD > measurements from his last two casts. > > He told me it was too difficult to measure with he cast on. That was > his answer. I'm sorry, but doesn't that mean he is flying blind, > not knowing how the rotation is being affected?! > > I also expressed my concern on the loose cast, which for some reason > tonight is much tighter, and he said it must be that has lost > weight. I asked if I should get an x-ray and he agreed this would be > a good idea. > > Australia do not measure in RVAD either. They see it as a guideline > only. Why are these people so completely blind? > > Honestly, I am furious yet feel so helpless. It may take some time, > but eventually they are going to have to recognise the early > treatment process as a superior treatment and will have no choice > but to provide it here. > > Take care everyone. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Jacki, thanks so much for your support. I have sprung into action and feel I am actually getting something achieved now. The ortho who casts in Australia is a man called Angus Grey, and he currently treats another child with infantile scoliosis. That's a bonus already. I made an appointment with him about 2 months ago to discuss bringing this to Australia generally, but now I desperatly need him to cast . I called today and tried to get another appointment close, but he is soooo booked up, so thankgod I booked that appointment, which is in 4 weeks time. He doesn't do the early treatment process, but maybe he will listen when I show him all this evidence, testimonials etc and give it a try for us. As far as spinal fusion is concerned, I was told once had a spinal fusion, he would be fixed. Since I began researching, I've discovered that it is not exactly the case, depending on how young they are when they have a fusion. I told my ortho that here in Australia, and he then admitted would most likely still end up with major deformities if he were fused when it was scheduled for. Already we have bought him about 4 years. Anyway, take care! > > > > > > Lets try and get you and to the U.S. for treatment. > > > Have you been in contact with Shellie? > > > > > > Let me know how we can help. > > > > > > HRH > > > IT GETS WORSE > > > > > > > > > Hi everyone again, it's from Australia. > > > > > > Last night I emailed the London Orthopedic surgeon for s > > RVAD > > > measurements from his last two casts. > > > > > > He told me it was too difficult to measure with he cast on. > That > > was > > > his answer. I'm sorry, but doesn't that mean he is flying > blind, > > > not knowing how the rotation is being affected?! > > > > > > I also expressed my concern on the loose cast, which for some > > reason > > > tonight is much tighter, and he said it must be that > has > > lost > > > weight. I asked if I should get an x-ray and he agreed this > > would be > > > a good idea. > > > > > > Australia do not measure in RVAD either. They see it as a > > guideline > > > only. Why are these people so completely blind? > > > > > > Honestly, I am furious yet feel so helpless. It may take some > > time, > > > but eventually they are going to have to recognise the early > > > treatment process as a superior treatment and will have no > > choice > > > but to provide it here. > > > > > > Take care everyone. > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Hi , <<As far as spinal fusion is concerned, I was told once had a spinal fusion, he would be fixed. Since I began researching, I've discovered that it is not exactly the case, depending on how young they are when they have a fusion.>> This is very true. Fusion in a small child should be an absolute last resort. There is a time and a place for fusion, but for small children with severe scoliosis, there are other advances in medical technology that should be considered first. My Braydon had a fusion surgery when he was 11 months old (fused from T5-L1, no instrumentation). It stopped the progression of his congenital scoliosis, but it also stopped the vertical growth potential of that part of his spine. He is now 11yrs old. He trunk is much shorter (compromised) than it should be. At age 6yrs old, Braydon had 2 VEPTR rods placed to support his spine and to improve the capacity and function of his right lung. He is doing VERY well now. You'd never know by looking at him what his little spine looks like. My point is to please make sure you have considered all the recommendations before making a decision as huge as fusion surgery, or any surgery. You're doing great. Keep up the good work. BTW, Braydon's doc is in SLC and works closely with Dr. D at Shriners. You'd be in great hands if you came here for a visit to check out more options. My best, Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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