Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Hi Sharon, thanks for the welcome. I assume that I have juvenile idiopathic scoliosis, i have never been told. This is just want i am picking up from everything i have been reading at this site. Both of my parents are pasted away so i don't have anyone to ask these questions to. Up until i started having problems i just took my back for granted. But know things have changed, since having my son and with my husband having a small lower curvature that is now giving him some problems. As to wearing that awful backbrace for 7 years at the time it was all i knew thinking back it was terrible but it held me in place until they could operate when i was 13 and 55 degrees out. Its also interesting to read thing that have been written by other members because i live in Winnipeg , Manitoba Canada. We have Manitoba medical and it covers all our medical expenses. My back surgery was covered, when i had my son 5 years ago and had to spend 6 weeks in hospital before having him and then he was in for 6 weeks after delivery it was covered. But for how long this current system will hold out is not promising we also tend to lose a lot of our doctors to you guys, and get a lot of your bad doctors. Well thanks again for the welcome and i would love to hear from you again and get to know you and others. Debbie from Winnipeg -- Re: I am very scared now. Welcome to the forum, Debbie! We're a " special " bunch all right,more special than we'd like to be, if I may speak for the group. 7 years in a Milwaukee! Wow! I had about a year, but they said it was helping one curve and worsening the other. As I recall, it wasn't too bad once I got used to it, but it was sheer torture at first. Then again, they always said I wore it too loose, or some such nonsense. I was 9 at the time and it took them months to make. I'm convinced the blasted thing was already too small (the pelvic girdle part) by the time they stuffed me in it Before and after that I had axillary jackets, and as a baby was in a plaster shell that made me look like a little turtle, if I turned onto my stomach. I have congenital scoliosis, which means some mal-formed vertebrae caused my spine to grow crooked beginning in the womb. Is yours juvenile idiopathic? (assuming you've been told) It seems most people got diagnosed later than you or I did. I'm sorry to hear you've now joined the bunch of us with surgically induced flatback. It's no picnic, but neither is untreated scoliosis, from what I hear. Best wishes to you in your pursuit of health, and please stay around so we can get to know you. Sharon in Southern New Hampshire Congenital scoliosis w/ spina bifida and other vertebral anomalies 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc. I am very scared now. hi, I am shocked to learn about this condition that i obviously have but thought i was alone. i was diagnosed with scoliosis when i was 6 years old. i wore the milwake backbrace for 7 years then had the " surgery " yes harrington rods and fussion. my hole spine except for the lower two vertabra. I started having back pain (lower)in my late teens. But in the last 15 years it was getting to the point that i was going to be not only crippled from pain but know i realize many more things could have happened. Around two years ago, my husband had to go to a chiropactor for some reason. By this point he was use to picking me up off the floor from spasms, or having to carry my infant son for me. Well i was told 26 years ago never, ever, never go to a chiropractor, ever. So when my husband told DR.Rick about me he wanted me to come see him. At first i was leary but by this point i had nothing to lose. Well as i see i am running out of room. Let me just say he saved my life. I would really like to start chatting with others who are special like myself. e-mail me Debbie Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. ----------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 -- Re: I am very scared now. Welcome to the forum, Debbie! We're a " special " bunch all right,more special than we'd like to be, if I may speak for the group. 7 years in a Milwaukee! Wow! I had about a year, but they said it was helping one curve and worsening the other. As I recall, it wasn't too bad once I got used to it, but it was sheer torture at first. Then again, they always said I wore it too loose, or some such nonsense. I was 9 at the time and it took them months to make. I'm convinced the blasted thing was already too small (the pelvic girdle part) by the time they stuffed me in it Before and after that I had axillary jackets, and as a baby was in a plaster shell that made me look like a little turtle, if I turned onto my stomach. I have congenital scoliosis, which means some mal-formed vertebrae caused my spine to grow crooked beginning in the womb. Is yours juvenile idiopathic? (assuming you've been told) It seems most people got diagnosed later than you or I did. I'm sorry to hear you've now joined the bunch of us with surgically induced flatback. It's no picnic, but neither is untreated scoliosis, from what I hear. Best wishes to you in your pursuit of health, and please stay around so we can get to know you. Sharon in Southern New Hampshire Congenital scoliosis w/ spina bifida and other vertebral anomalies 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc. I am very scared now. hi, I am shocked to learn about this condition that i obviously have but thought i was alone. i was diagnosed with scoliosis when i was 6 years old. i wore the milwake backbrace for 7 years then had the " surgery " yes harrington rods and fussion. my hole spine except for the lower two vertabra. I started having back pain (lower)in my late teens. But in the last 15 years it was getting to the point that i was going to be not only crippled from pain but know i realize many more things could have happened. Around two years ago, my husband had to go to a chiropactor for some reason. By this point he was use to picking me up off the floor from spasms, or having to carry my infant son for me. Well i was told 26 years ago never, ever, never go to a chiropractor, ever. So when my husband told DR.Rick about me he wanted me to come see him. At first i was leary but by this point i had nothing to lose. Well as i see i am running out of room. Let me just say he saved my life. I would really like to start chatting with others who are special like myself. e-mail me Debbie Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. ----------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Hi Debbie, I live in BC but I have corresponded with another person in Winnipeg, who has scoliosis. If you would like to e-mail (mad.monk@...) privately, I'm sure that she would like to talk with you. I'm in the process of starting a chapter of the Scoliosis Association and has sent her some of the information that I have obtained. I was in a Milwaukee brace for 5 years, after being in the body cast for 8 months and before having the surgery at 15.This happened in Saskatchewan, with the surgery in Toronto. Llweyn Re: I am very scared now. Welcome to the forum, Debbie! We're a " special " bunch all right,more special than we'd like to be, if I may speak for the group. 7 years in a Milwaukee! Wow! I had about a year, but they said it was helping one curve and worsening the other. As I recall, it wasn't too bad once I got used to it, but it was sheer torture at first. Then again, they always said I wore it too loose, or some such nonsense. I was 9 at the time and it took them months to make. I'm convinced the blasted thing was already too small (the pelvic girdle part) by the time they stuffed me in it Before and after that I had axillary jackets, and as a baby was in a plaster shell that made me look like a little turtle, if I turned onto my stomach. I have congenital scoliosis, which means some mal-formed vertebrae caused my spine to grow crooked beginning in the womb. Is yours juvenile idiopathic? (assuming you've been told) It seems most people got diagnosed later than you or I did. I'm sorry to hear you've now joined the bunch of us with surgically induced flatback. It's no picnic, but neither is untreated scoliosis, from what I hear. Best wishes to you in your pursuit of health, and please stay around so we can get to know you. Sharon in Southern New Hampshire Congenital scoliosis w/ spina bifida and other vertebral anomalies 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc. I am very scared now. hi, I am shocked to learn about this condition that i obviously have but thought i was alone. i was diagnosed with scoliosis when i was 6 years old. i wore the milwake backbrace for 7 years then had the " surgery " yes harrington rods and fussion. my hole spine except for the lower two vertabra. I started having back pain (lower)in my late teens. But in the last 15 years it was getting to the point that i was going to be not only crippled from pain but know i realize many more things could have happened. Around two years ago, my husband had to go to a chiropactor for some reason. By this point he was use to picking me up off the floor from spasms, or having to carry my infant son for me. Well i was told 26 years ago never, ever, never go to a chiropractor, ever. So when my husband told DR.Rick about me he wanted me to come see him. At first i was leary but by this point i had nothing to lose. Well as i see i am running out of room. Let me just say he saved my life. I would really like to start chatting with others who are special like myself. e-mail me Debbie Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. -------------------------------------------------------------------------- --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Hi, Debbie. I know what you mean about taking your back for granted. Those were the days! My 1971 fusion surgery was done for free at a Shriners' hospital, so my parents got around insurance deductibles that way. Such charity facilities do wonderful work, without the burden of public beaurocracy. It will be interesting to say the least to see what happens to the medical system in Canada. Socialization sounds good in theory; the problem is that it doesn't take human nature into consideration. People will only do their best work if they are appropriately compensated. And our system of " managed care " and its ever-tightening grip is a serious problem as well. We have problems here with doctors making an expdus from states with high malpractice insurance, and with the better doctors refusing to settle for insurance reimbursement. I don't think anyone really has the answers. Take care, and I'm glad to see you're still with us. Sharon I am very scared now. hi, I am shocked to learn about this condition that i obviously have but thought i was alone. i was diagnosed with scoliosis when i was 6 years old. i wore the milwake backbrace for 7 years then had the " surgery " yes harrington rods and fussion. my hole spine except for the lower two vertabra. I started having back pain (lower)in my late teens. But in the last 15 years it was getting to the point that i was going to be not only crippled from pain but know i realize many more things could have happened. Around two years ago, my husband had to go to a chiropactor for some reason. By this point he was use to picking me up off the floor from spasms, or having to carry my infant son for me. Well i was told 26 years ago never, ever, never go to a chiropractor, ever. So when my husband told DR.Rick about me he wanted me to come see him. At first i was leary but by this point i had nothing to lose. Well as i see i am running out of room. Let me just say he saved my life. I would really like to start chatting with others who are special like myself. e-mail me Debbie Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. ----------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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