Have severe scoliosis-76 degree curve in lumbar area. Also spinal stenosis and nerve damage in my legs caused by the spine. Surgery isn't an option for me. I also have osteoporosis. Have avoided pain meds. I have script for percoset but Leary about using it. I just do what I can on a given day. I don't plan too many things. Distraction is the best for me. It's not easy but this is something I have to live with. I see myself eventually in a wheel chair. Doing the most I can, while I can which for most people isn't much. Stay uplifted. Don't let depression sink it
Hi @aeb1957 and welcome to Connect.
Your message is very brief. Can you tell us a bit more about you? Then I can help connect you to people and conversations, like @annieecruz@mieke for example who also live with scoliosis.
Hi Colleen,
I have been searching everywhere for any med journal papers or data on what occurs when growth rods are inserted into a child (that is still growing,) and the growth rods are subsequently not extended as per standard process (every six months - left for over 3 years)
I was wondering if you are aware of any such info or could suggest where I could look for it please?
Thank you
Linda
Hi Colleen,
I have been searching everywhere for any med journal papers or data on what occurs when growth rods are inserted into a child (that is still growing,) and the growth rods are subsequently not extended as per standard process (every six months - left for over 3 years)
I was wondering if you are aware of any such info or could suggest where I could look for it please?
Thank you
Linda
I have stenosis in 3 places, also a large curve that was never diagnosed and several disks are ruptured or are bone on bone. I was also told one of the bones off the spine is broken. I am almost 72 and pacemaker dependent. A 5 hour robotic surgery was recommended, any feedback?
I have stenosis in 3 places, also a large curve that was never diagnosed and several disks are ruptured or are bone on bone. I was also told one of the bones off the spine is broken. I am almost 72 and pacemaker dependent. A 5 hour robotic surgery was recommended, any feedback?
Who recommended the robotic surgery? I am 83 with degenerative scolosis, degenerative disc disease, 0steoporosis, spinal stenosis, and broke C-1 in my neck 16 years ago! I have a lot of pain, but find that PT helps to some extent. I recently had foot surgery to straighten a hammer toe, and it has healed nicely and no more pain in that foot!!! Don't know if I would be able to recoup from back surgery! Am interested in what you decide
Hi there, my name is Alanna, and I'm a 34-year-old woman who was diagnosed with scoliosis at the age of 15. In the first years following my diagnosis, I was advised by both my family doctor and an orthopedic surgeon that my scoliosis should not cause any pain, and that it shouldn't interfere with my functioning or with leading a normal life. Unfortunately, over time that counsel has proven to be anything but accurate. Throughout my late teens and my twenties, I felt mostly okay. My gait felt awkward due to the unevenness of my hips, and I felt some back pain while exercising, but I was still ABLE to exercise and was pain-free most of the time. Since I turned 30, though, things have changed dramatically. I now have burning pain in my back when I sit for an extended period, but the worst part is my lower body. My right hip juts out so unnaturally that the angle from my hip to my knee is very steep and puts a ton of pressure on my knee. Same with the angle from my knee to my ankle. My right leg aches and throbs incessantly; all of the muscles are extremely tight (I feel like I am never able to stretch them out to the point where they feel close to normal), and my joints throb. I know some people find that walking helps alleviate their scoliosis pain, but for me, being on my feet (anything that puts those unusual angles between the joints of my right leg into play) in any form, be it standing, walking, running, climbing stairs -- all of it makes the pain worse. This has meant that my once active lifestyle has become very circumscribed. I can't go for walks; I tend to want to avoid standing activities I enjoy, such as cooking; going out to run errands feels like too much bother because of the pain I know it will involve . . . I end up staying home, isolated, much more due to my pain. Even inside the house, I'm more likely to be lying down than in any other position, since sitting and standing both hurt. As I mentioned, I am only 34. The prospect of this reality persisting for the rest of my life is very difficult for me to accept. Because of my inability to take part in any kind of weight-bearing activity, I am especially concerned about loss of bone density and risk of osteoporosis as I get older. Doctors still tell me that scoliosis shouldn't cause pain, leaving me feeling very stuck and longing to find someone who can help me. I know surgery can be quite risky, yet I feel I'd be willing to try almost anything to regain some of my lost mobility and reduce my pain level.
I use crutches and have had scoliosis all my life and was never told by my doctors that my falling was contributed by my scoliosis but now in my 60's I do find that my balance is off and when I spoke to my doctor he still does not contribute the falling to my scoliosis
I was born with scoliosis. Lately every few months I take a fall....and BAD ONES. This last one I broke my left knee and right hand. Last fall, in June, I cracked my right femur and cracked my right hip. I REALLY think my scoliosis DOES contribute to my falls. This last time, I felt my right foot hit the back of my left leg. I'm DISGUSTED! Every time I take a fall, my fiance yells at me Like I Did It On Purpose! There HAS to be an explanation for this!
I was born with scoliosis. Lately every few months I take a fall....and BAD ONES. This last one I broke my left knee and right hand. Last fall, in June, I cracked my right femur and cracked my right hip. I REALLY think my scoliosis DOES contribute to my falls. This last time, I felt my right foot hit the back of my left leg. I'm DISGUSTED! Every time I take a fall, my fiance yells at me Like I Did It On Purpose! There HAS to be an explanation for this!
@ynnep510 I just wanted to say welcome to Connect. You’ve been through a lot with fractures. Has anyone talked to you about preventing falls? Are you using an assistive device like a walker or cane? My elderly mom has no sense of balance and has had fractures due to osteoporosis and together we made a decision on a wheelchair. She wants to maintain her independence at home and can transfer from the chair and this was a good solution.
I was born with scoliosis. Lately every few months I take a fall....and BAD ONES. This last one I broke my left knee and right hand. Last fall, in June, I cracked my right femur and cracked my right hip. I REALLY think my scoliosis DOES contribute to my falls. This last time, I felt my right foot hit the back of my left leg. I'm DISGUSTED! Every time I take a fall, my fiance yells at me Like I Did It On Purpose! There HAS to be an explanation for this!
I'm so sad to hear your fiancé's response. In my experience, people who are somewhat lacking in emotional maturity (including me), will sometimes have a sort of knee-jerk type reaction of anger when anything goes wrong for any reason, because they don't know how to interpret or handle the adrenaline that floods the body when bad things happen.
Do you know of any other health conditions that you have, by the way?
I have scoliosis, too, but mine is mild enough to be almost inconsequential.
I was diagnosed with scoliosis around 4 months ago. I have a 40 degree "s" curve. I was sent to a specialist about it and basically all he said was that I had to wait and come back in 6 months. That was 3 months ago and I've been experiencing back pain daily and didn't know if that was because or just regular scoliosis pains or the curvature getting worse. Any advice?
I have scoliosis caused by degenerative disc disease and failed back surgeries cause they weren’t done properly , you name it I’ve been through it all ,finally I did have to have scoliosis surgery done from bottom of my neck to tailbone but not the neck the surgery took 14 hours to do and 4 pints of blood in ICU2 days , hospital 8 days then rehab 10 days , home health care three x’s a week four 6 weeks and now 12 weeks in physical therapy , it’s been ruff but I’m ahead of my schedule and I’m 75 so far I’m doing great can’t deny I’m still sore and stiff but that’s to be expected . Doctor said it would be a year before I can drive but I will be able to do a lot I will never be able to bend at the waist only from hips I forgot to mention I have long rods and screws in my pelvis to help hold the hardware up and had to have back pain stimulator taken out and old hardware taken out and cage built at my lumbar spine and spacers put in theistic spine because I have broken 2 vertebrae there that caused me hump over , I was 5’8” went down to 5’4” now I’m 5’6 1/2” I never realized how good it was to be tall until I had lost it . I hope I haven’t scared you but I wanted you to know what it like , it’s up to you what you want to do but for me I watched my mother go through this and was a lot worse than me , she was in a wheelchair and a lot of pain her body was in a setting position when she stood up my heart aches when I think about her and I didn’t want that for me . Good luck in making your decision and God bless you ❤️🙏
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amberpep I was given PT until I stopped growing but no doctors or PT ever made my issue of my scoliosis
Hi Colleen,
I have been searching everywhere for any med journal papers or data on what occurs when growth rods are inserted into a child (that is still growing,) and the growth rods are subsequently not extended as per standard process (every six months - left for over 3 years)
I was wondering if you are aware of any such info or could suggest where I could look for it please?
Thank you
Linda
Hi Linda, you’ll find resources shared with you in the discussion you started here:
- What occurs if Harrington rods aren’t extended? https://connect.mayoclinic.org/discussion/what-occurs-if-harrington-rods-arent-extended/
I have stenosis in 3 places, also a large curve that was never diagnosed and several disks are ruptured or are bone on bone. I was also told one of the bones off the spine is broken. I am almost 72 and pacemaker dependent. A 5 hour robotic surgery was recommended, any feedback?
Who recommended the robotic surgery? I am 83 with degenerative scolosis, degenerative disc disease, 0steoporosis, spinal stenosis, and broke C-1 in my neck 16 years ago! I have a lot of pain, but find that PT helps to some extent. I recently had foot surgery to straighten a hammer toe, and it has healed nicely and no more pain in that foot!!! Don't know if I would be able to recoup from back surgery! Am interested in what you decide
Hi, @alannaj, did you ever find any solutions for your pain?
I was born with scoliosis. Lately every few months I take a fall....and BAD ONES. This last one I broke my left knee and right hand. Last fall, in June, I cracked my right femur and cracked my right hip. I REALLY think my scoliosis DOES contribute to my falls. This last time, I felt my right foot hit the back of my left leg. I'm DISGUSTED! Every time I take a fall, my fiance yells at me Like I Did It On Purpose! There HAS to be an explanation for this!
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1 Reaction@ynnep510 I just wanted to say welcome to Connect. You’ve been through a lot with fractures. Has anyone talked to you about preventing falls? Are you using an assistive device like a walker or cane? My elderly mom has no sense of balance and has had fractures due to osteoporosis and together we made a decision on a wheelchair. She wants to maintain her independence at home and can transfer from the chair and this was a good solution.
Do you have someone who helps you at home?
I'm so sad to hear your fiancé's response. In my experience, people who are somewhat lacking in emotional maturity (including me), will sometimes have a sort of knee-jerk type reaction of anger when anything goes wrong for any reason, because they don't know how to interpret or handle the adrenaline that floods the body when bad things happen.
Do you know of any other health conditions that you have, by the way?
I have scoliosis, too, but mine is mild enough to be almost inconsequential.
I have scoliosis caused by degenerative disc disease and failed back surgeries cause they weren’t done properly , you name it I’ve been through it all ,finally I did have to have scoliosis surgery done from bottom of my neck to tailbone but not the neck the surgery took 14 hours to do and 4 pints of blood in ICU2 days , hospital 8 days then rehab 10 days , home health care three x’s a week four 6 weeks and now 12 weeks in physical therapy , it’s been ruff but I’m ahead of my schedule and I’m 75 so far I’m doing great can’t deny I’m still sore and stiff but that’s to be expected . Doctor said it would be a year before I can drive but I will be able to do a lot I will never be able to bend at the waist only from hips I forgot to mention I have long rods and screws in my pelvis to help hold the hardware up and had to have back pain stimulator taken out and old hardware taken out and cage built at my lumbar spine and spacers put in theistic spine because I have broken 2 vertebrae there that caused me hump over , I was 5’8” went down to 5’4” now I’m 5’6 1/2” I never realized how good it was to be tall until I had lost it . I hope I haven’t scared you but I wanted you to know what it like , it’s up to you what you want to do but for me I watched my mother go through this and was a lot worse than me , she was in a wheelchair and a lot of pain her body was in a setting position when she stood up my heart aches when I think about her and I didn’t want that for me . Good luck in making your decision and God bless you ❤️🙏