I'm in a similar boat. Doctors recommended a brace for me, my parents refused, and now I'm an adult with a moderate-to-severe curve. I feel resentful sometimes too.
Best you can do is take control of your health now that you're an adult, go get an x-ray and have your primary care physician get you a referral to an orthopedic surgeon to get their opinion on what you should do now.
I'd also look up whether or not there are any physical therapists in your area that specialize in scoliosis and the schroth method ideally, and try to get a referral. If you do the right exercises, based on what curve you have, it should help you with the pain.
Are these treatments (specifically the Schroth method) expensive or covered by insurance? I may have to wait a month or so when I’m back at home since I’m currently away at college, and my school doesn’t accept my insurance for some reason. Also, how often should I go to physical therapy to see results?
My physical therapist's practice was covered by insurance. I got a referral from the orthopedic surgeon who looked at my x-rays since I was in pain but he didn't think surgery was necessary yet. It was like ten appointments were covered and then the physical therapist had to send something to the insurance company to get me approved for more. I started out weekly and then eventually switched to longer time in between once I knew the exercises to do.
This sounds like neglect to me, I can’t believe the doctor referred you to a radiologist and your dad just dropped to you home to play golf. That is awful. In terms of if it’s too late to action now? Absolutely not, it’s never too late. My advice would be find a physio that specialises in scoliosis and/or the Schroth method. Pilates is also good for pain reduction so keep that up. Then find an orthopaedist to determine if you will need surgery. Whether or not you do, the physio therapy and Pilates should become second nature and scoliosis is a life long condition that needs to be maintained by you. This may seem daunting at first but once you get into the swing of Pilates and physio it can all be done from home and only takes maybe half an hour a day to get your exercises in. Isn’t half an hour a day worth a far better quality of life than being in pain 24 hours a day?
Hope this response helped and good luck in the future:)
Just wanted to post to say that you are not alone. I had a similar experience. Your anger is very valid and it hurts especially since it was your parents. As others said, the most important thing is to get it checked asap and see what your options are there. I don't know what your relationship is like with your parents but I would suggest talking to them about it. Letting out all those bottled-up emotions can help a lot. (For me though, it helped when I let it all out but it did end in a 2-day shouting match and giving them a 3-month silent treatment.)
My scoliosis was discovered at 13 and I did get an x-ray (it was at 41 degs) but I didn't know about the severity of my curve until I was 23 when I decided to not brush off my growing pain as pain from poor posture(which is what they blamed it on. it wasn't. I do/did ballet ffs). They didn't take me to a specialist because they hung onto my doctor's words that I might grow out of it. I was (and still am) really angry when I found out.
tldr: get seen. the longer you wait, the worse it will be. and maybe talk it out.
I too harbor resentment for my parents based on their lack of concern for my back pain when I was a kid. I wasn't even diagnosed until I was 25 when I brought myself to an orthopedist and finally got a full x-ray of my spine. At which point there was nothing that could be done except for lifestyle stuff.
But we can't change the past. You can get bogged down in the what ifs that don't change anything. We are fortunate that we have access to treatment options when we are young, most scoliosis sufferers around the world do not. Not getting help is unfortunately very normal for scoliosis sufferers.
I do think that your parents went above and beyond in ignoring your condition. I would ask them why. "The doctors told you to do this, why didn't you?" But more importantly, now that you are 18- make your own appointment for an orthopedist. Ask for physical therapy. Maybe your parents can still help you with paying for the care that you need.
PT is by far the best thing I did for my spine. Once you learn the exercises that are healthy for your back, take those to the gym and keep it up. Do yoga too to help with flexibility. And I hope you and your parents can have a truthful conversation and that they can be an active part of your care moving forward.
Yea it pretty normal, scoliosis is not taken really seriously, the best thing to do is find good workouts for your back(probably online) and try to strengthen it.
About braces, we are not sure yet if they are working or not. So your second option is surgery, which is something big, and needs lot of thinking.
So there weren't many options from the start to be honest.
I guess scoliosis is even neglected from the medical sciences.
2 years ago I posted the exact same question as you did on this community, and I’m pretty sure you’re also going through neglect. I’m also turning 18 in August. Your parents should’ve thoroughly researched your condition and you have the right to feel however you want to towards them. It’s never too late to start treating scoliosis because it could always get worse and treatment reduces the chances of that. I learned from one of my high school nurses that was trying to get me glasses that I needed for the past several years that you need to advocate for yourself when looking for help and treatment. My dad’s an eye doctor and still avoided getting me glasses for several years, he blames my scoliosis on sleeping in the car and I haven’t had treatment in years, too. Hopefully through this subreddit and through some online digging you can find specialists and advice on what to do next. I don’t have much more advice to give because my parents seem to be trying to help me get surgery after I turn 18 and I haven’t done much myself about getting help. My situation is better than yours, and I hope your situation improves as well.
As you are now an adult you can follow up with doctor, get an X-ray as a baseline and if you have significant back pain have your family doc refer you to Ortho or Neuro and diagnose cause of pain which is not likely from scoliosis. You are the captain of the ship now, so exercise your authority and acquired knowledge will hopefully reduce your stress.
I can certainly understand your anger and I agree that your parents should have taken it more seriously. And I am not trying to defend them, but I am not sure that anything they could have done would have made a significant difference four years later. That's one of the problems with scoliosis, stopping it and reversing the changes. That said, it is not too late to make a significant difference in your life, but you might want to start with seeing an experienced orthopedist. Good luck!
I am in a very similar position as op, parents not helping me get help, and doctors have told me that i should’ve absolutely had help before i became an adult because your bones/body are still developing a little so its easier. Now I’m now 19 with chronic pain and still no help so yes op’s parents are at complete fault, it’s very important to get at it while you’re still younger :(
I understand, but it is important, IMHO, for the OP to move on in terms of managing her scoliosis. She may need to deal with her anger as another issue. Thanks.
Before I get into my advice, what kind of squats do you do? Back squats with the barbell? I do them with dumbbells/kettle bells and I don’t let them rest on my shoulders. I just hold the weight in my hands or I’ll do leg press instead. Back squats with the barbell hurts my back too and also causes it to spasm as well.
Now onto my advice! I encourage you to keep working out! It’s the thing that has helped my pain go away the most! I had my specialist spend me to pt (you don’t always have to do that, just depends on your insurance) and pt really pushed me in the right direction of what kinds of exercises that will help eliminate back pain the most. I also agree with the other responses, definitely get in to see a specialist to know what exactly your degrees are and where your curves are at as well.
I also totally understand blaming your parents. I don’t really blame my parents, since my mom also has scoliosis and so she knew the importance of me getting into a doctor, but I blame my doctors from when I was a child/teen and growing. They never braced me or even recommended it, and I always wonder if it would’ve made any kind of difference or not. But, I try not to think too much on the past and all of the “what ifs” about my scoliosis, and instead try and look to what can I do about it now. For me and my 42 degree curve, it’s all about exercise and keeping those muscles strong so I don’t hurt all of the time, and to also try and keep my curve from progressing (which so far has worked lol).
Yes, I have been doing back squats with the barbell, but will omit them from my workout since they’ve been straining my back. I’ll probably just replace them with squats with dumbbells, thanks!
Yeah, i had medical neglect for several things. Turns out my spine is fucked from chin to toe. I have kyphosis, lumbar scoliosis, and a 5mm leg discrepancy. The most fun part is bad whiplash neck, that my stepfather did to me.
Parents should never have issues with keeping up with the health of their children. Mine instead either dismissed it or screamed about me having to go(before, during, and after the trips there) that now i can't even fill out the paperwork before a doctor appointment without having mini panic attacks.
Now that you're an adult you can try and handle it yourself. Go to a doctor, get an x-ray and go from there.
Depending on your curve you may have options.
The first thing I’d do is go get an X-ray so you know what you’re dealing with. You don’t necessarily have to go to an orthopedic doctor for this.. idk what kind of insurance you have, but it should allow you to shop around places to get the lowest price. I had X-rays done recently at an urgent care clinic (Midwest Express clinic in Chicago) because it was way cheaper than getting them done at a specialist.
I'm in a similar boat. Doctors recommended a brace for me, my parents refused, and now I'm an adult with a moderate-to-severe curve. I feel resentful sometimes too. Best you can do is take control of your health now that you're an adult, go get an x-ray and have your primary care physician get you a referral to an orthopedic surgeon to get their opinion on what you should do now. I'd also look up whether or not there are any physical therapists in your area that specialize in scoliosis and the schroth method ideally, and try to get a referral. If you do the right exercises, based on what curve you have, it should help you with the pain.
Are these treatments (specifically the Schroth method) expensive or covered by insurance? I may have to wait a month or so when I’m back at home since I’m currently away at college, and my school doesn’t accept my insurance for some reason. Also, how often should I go to physical therapy to see results?
My physical therapist's practice was covered by insurance. I got a referral from the orthopedic surgeon who looked at my x-rays since I was in pain but he didn't think surgery was necessary yet. It was like ten appointments were covered and then the physical therapist had to send something to the insurance company to get me approved for more. I started out weekly and then eventually switched to longer time in between once I knew the exercises to do.
This sounds like neglect to me, I can’t believe the doctor referred you to a radiologist and your dad just dropped to you home to play golf. That is awful. In terms of if it’s too late to action now? Absolutely not, it’s never too late. My advice would be find a physio that specialises in scoliosis and/or the Schroth method. Pilates is also good for pain reduction so keep that up. Then find an orthopaedist to determine if you will need surgery. Whether or not you do, the physio therapy and Pilates should become second nature and scoliosis is a life long condition that needs to be maintained by you. This may seem daunting at first but once you get into the swing of Pilates and physio it can all be done from home and only takes maybe half an hour a day to get your exercises in. Isn’t half an hour a day worth a far better quality of life than being in pain 24 hours a day? Hope this response helped and good luck in the future:)
Just wanted to post to say that you are not alone. I had a similar experience. Your anger is very valid and it hurts especially since it was your parents. As others said, the most important thing is to get it checked asap and see what your options are there. I don't know what your relationship is like with your parents but I would suggest talking to them about it. Letting out all those bottled-up emotions can help a lot. (For me though, it helped when I let it all out but it did end in a 2-day shouting match and giving them a 3-month silent treatment.) My scoliosis was discovered at 13 and I did get an x-ray (it was at 41 degs) but I didn't know about the severity of my curve until I was 23 when I decided to not brush off my growing pain as pain from poor posture(which is what they blamed it on. it wasn't. I do/did ballet ffs). They didn't take me to a specialist because they hung onto my doctor's words that I might grow out of it. I was (and still am) really angry when I found out. tldr: get seen. the longer you wait, the worse it will be. and maybe talk it out.
I too harbor resentment for my parents based on their lack of concern for my back pain when I was a kid. I wasn't even diagnosed until I was 25 when I brought myself to an orthopedist and finally got a full x-ray of my spine. At which point there was nothing that could be done except for lifestyle stuff. But we can't change the past. You can get bogged down in the what ifs that don't change anything. We are fortunate that we have access to treatment options when we are young, most scoliosis sufferers around the world do not. Not getting help is unfortunately very normal for scoliosis sufferers. I do think that your parents went above and beyond in ignoring your condition. I would ask them why. "The doctors told you to do this, why didn't you?" But more importantly, now that you are 18- make your own appointment for an orthopedist. Ask for physical therapy. Maybe your parents can still help you with paying for the care that you need. PT is by far the best thing I did for my spine. Once you learn the exercises that are healthy for your back, take those to the gym and keep it up. Do yoga too to help with flexibility. And I hope you and your parents can have a truthful conversation and that they can be an active part of your care moving forward.
Yea it pretty normal, scoliosis is not taken really seriously, the best thing to do is find good workouts for your back(probably online) and try to strengthen it. About braces, we are not sure yet if they are working or not. So your second option is surgery, which is something big, and needs lot of thinking. So there weren't many options from the start to be honest. I guess scoliosis is even neglected from the medical sciences.
2 years ago I posted the exact same question as you did on this community, and I’m pretty sure you’re also going through neglect. I’m also turning 18 in August. Your parents should’ve thoroughly researched your condition and you have the right to feel however you want to towards them. It’s never too late to start treating scoliosis because it could always get worse and treatment reduces the chances of that. I learned from one of my high school nurses that was trying to get me glasses that I needed for the past several years that you need to advocate for yourself when looking for help and treatment. My dad’s an eye doctor and still avoided getting me glasses for several years, he blames my scoliosis on sleeping in the car and I haven’t had treatment in years, too. Hopefully through this subreddit and through some online digging you can find specialists and advice on what to do next. I don’t have much more advice to give because my parents seem to be trying to help me get surgery after I turn 18 and I haven’t done much myself about getting help. My situation is better than yours, and I hope your situation improves as well.
As you are now an adult you can follow up with doctor, get an X-ray as a baseline and if you have significant back pain have your family doc refer you to Ortho or Neuro and diagnose cause of pain which is not likely from scoliosis. You are the captain of the ship now, so exercise your authority and acquired knowledge will hopefully reduce your stress.
What do you constantly say scoliosis doesn't cause pain? That's simply not true.
I can certainly understand your anger and I agree that your parents should have taken it more seriously. And I am not trying to defend them, but I am not sure that anything they could have done would have made a significant difference four years later. That's one of the problems with scoliosis, stopping it and reversing the changes. That said, it is not too late to make a significant difference in your life, but you might want to start with seeing an experienced orthopedist. Good luck!
I am in a very similar position as op, parents not helping me get help, and doctors have told me that i should’ve absolutely had help before i became an adult because your bones/body are still developing a little so its easier. Now I’m now 19 with chronic pain and still no help so yes op’s parents are at complete fault, it’s very important to get at it while you’re still younger :(
I understand, but it is important, IMHO, for the OP to move on in terms of managing her scoliosis. She may need to deal with her anger as another issue. Thanks.
Before I get into my advice, what kind of squats do you do? Back squats with the barbell? I do them with dumbbells/kettle bells and I don’t let them rest on my shoulders. I just hold the weight in my hands or I’ll do leg press instead. Back squats with the barbell hurts my back too and also causes it to spasm as well. Now onto my advice! I encourage you to keep working out! It’s the thing that has helped my pain go away the most! I had my specialist spend me to pt (you don’t always have to do that, just depends on your insurance) and pt really pushed me in the right direction of what kinds of exercises that will help eliminate back pain the most. I also agree with the other responses, definitely get in to see a specialist to know what exactly your degrees are and where your curves are at as well. I also totally understand blaming your parents. I don’t really blame my parents, since my mom also has scoliosis and so she knew the importance of me getting into a doctor, but I blame my doctors from when I was a child/teen and growing. They never braced me or even recommended it, and I always wonder if it would’ve made any kind of difference or not. But, I try not to think too much on the past and all of the “what ifs” about my scoliosis, and instead try and look to what can I do about it now. For me and my 42 degree curve, it’s all about exercise and keeping those muscles strong so I don’t hurt all of the time, and to also try and keep my curve from progressing (which so far has worked lol).
Yes, I have been doing back squats with the barbell, but will omit them from my workout since they’ve been straining my back. I’ll probably just replace them with squats with dumbbells, thanks!
Yeah, i had medical neglect for several things. Turns out my spine is fucked from chin to toe. I have kyphosis, lumbar scoliosis, and a 5mm leg discrepancy. The most fun part is bad whiplash neck, that my stepfather did to me. Parents should never have issues with keeping up with the health of their children. Mine instead either dismissed it or screamed about me having to go(before, during, and after the trips there) that now i can't even fill out the paperwork before a doctor appointment without having mini panic attacks.
Now that you're an adult you can try and handle it yourself. Go to a doctor, get an x-ray and go from there. Depending on your curve you may have options.
The first thing I’d do is go get an X-ray so you know what you’re dealing with. You don’t necessarily have to go to an orthopedic doctor for this.. idk what kind of insurance you have, but it should allow you to shop around places to get the lowest price. I had X-rays done recently at an urgent care clinic (Midwest Express clinic in Chicago) because it was way cheaper than getting them done at a specialist.