Wow. I'm so confused. This shouldn't be this difficult. After roughly 18 months trying to be allowed to ask a question, I finally got approval and am now trying to do this on my iPhone so I don't wake my husband using the computer. I'm new too. Wore Boston brace at age 13. It was miserable. Supposed to be 5'7" only 5'4" and now I'm only 5'3". Long story short I'm age 50 now. Been living off of pain meds and seeing pain mgt dr for 2 years. I'm so depressed from my pain I was having very dark thoughts. My outside looks better than my inside. I'm
Told I look young for my age but my spine feels otherwise. I'm 55 degrees in my thoracic spine 40 something lumbar. Neck is wrecked and presses on my cord. Supposed to have total fusion surgery to my sacrum next year at UCSF. Dr Ames is wonderful but I don't want to be disabled, not being able to put my own shoes on. I'm angry. So angry that all my hours and hours of research no one seems to care much about scoliosis. All sorts of funding for diabetes. Cancer...u name it. Not much for scoliosis. It's the spine! Pretty important in my opinion. I have one son. He's 23 years old 6'4" tall and has my back. Was told when I was pregnant I was having a son and I was grateful because of the propensity of scoliosis being more likely in girls. Well nope. My kid got my spine. Even curves the same. Recently I cancelled my 2 day surgery set for next May (3 neurosurgeons were required for my lovely spine) and I charged $4500 on my credit card for the Spinecor brace. Has anyone my age worn one for very long? Only had it 3 weeks. It's not fun but better than the Boston one I had at age 12. Right now I feel I blew $4500 on basically nothing. It holds me up better but I still have low energy. Pain and muscle spasms and worse pain in my neck because it pulls on it. I don't know what to say or do. I see specific PT in some states where Schroth exercises are taught and the CLEAR method PT for scoliosis but there's none of that in Reno Nevada. I've been to UCLA & UCSF & got two different surgical options. Who on here my age had scoliosis surgery to their sacrum. Are u glad u did? Reading the risks in my paperwork I received made me want to throw up. I was physically sick for days. I don't know what the right thing to do is. I'm grateful I finally got approved to post after 18 months, but I'm so sad depressed and anxious and angry I can't think of anything but my curved & crumbling spine. The stabbing pain kind of doesn't let me forget. I'm not sure how to navigate thru this site. Tears blurring my vision now but does anyone know how or where I can find out how to get more research into scoliosis treatments? How much money goes into it per year or is it basically surgeons doing it on their own time? It's almost 2017 and no one knows how it's caused. So upsetting. Sorry for the rant but I'm so sick of ppl saying how good I look and hearing "back problems at your age?" Um yeah. Double S curves, arthritis throughout herniated & bulging discs & pain daily that's indescribable. Any thoughts or directions to point me in is greatly appreciated. Oh and the lady who said her 11 year old doesn't show signs of it yet... my son was diagnosed pretty much by me during his well child check up with his pediatrician. I told her I saw it when he was 13. I was right. Went from perfectly straight to curves in less than 2 years. You'd think at this day & age there'd be tools to stop it.
Told I look young for my age but my spine feels otherwise. I'm 55 degrees in my thoracic spine 40 something lumbar. Neck is wrecked and presses on my cord. Supposed to have total fusion surgery to my sacrum next year at UCSF. Dr Ames is wonderful but I don't want to be disabled, not being able to put my own shoes on. I'm angry. So angry that all my hours and hours of research no one seems to care much about scoliosis. All sorts of funding for diabetes. Cancer...u name it. Not much for scoliosis. It's the spine! Pretty important in my opinion. I have one son. He's 23 years old 6'4" tall and has my back. Was told when I was pregnant I was having a son and I was grateful because of the propensity of scoliosis being more likely in girls. Well nope. My kid got my spine. Even curves the same. Recently I cancelled my 2 day surgery set for next May (3 neurosurgeons were required for my lovely spine) and I charged $4500 on my credit card for the Spinecor brace. Has anyone my age worn one for very long? Only had it 3 weeks. It's not fun but better than the Boston one I had at age 12. Right now I feel I blew $4500 on basically nothing. It holds me up better but I still have low energy. Pain and muscle spasms and worse pain in my neck because it pulls on it. I don't know what to say or do. I see specific PT in some states where Schroth exercises are taught and the CLEAR method PT for scoliosis but there's none of that in Reno Nevada. I've been to UCLA & UCSF & got two different surgical options. Who on here my age had scoliosis surgery to their sacrum. Are u glad u did? Reading the risks in my paperwork I received made me want to throw up. I was physically sick for days. I don't know what the right thing to do is. I'm grateful I finally got approved to post after 18 months, but I'm so sad depressed and anxious and angry I can't think of anything but my curved & crumbling spine. The stabbing pain kind of doesn't let me forget. I'm not sure how to navigate thru this site. Tears blurring my vision now but does anyone know how or where I can find out how to get more research into scoliosis treatments? How much money goes into it per year or is it basically surgeons doing it on their own time? It's almost 2017 and no one knows how it's caused. So upsetting. Sorry for the rant but I'm so sick of ppl saying how good I look and hearing "back problems at your age?" Um yeah. Double S curves, arthritis throughout herniated & bulging discs & pain daily that's indescribable. Any thoughts or directions to point me in is greatly appreciated. Oh and the lady who said her 11 year old doesn't show signs of it yet... my son was diagnosed pretty much by me during his well child check up with his pediatrician. I told her I saw it when he was 13. I was right. Went from perfectly straight to curves in less than 2 years. You'd think at this day & age there'd be tools to stop it.
Comment