Scoliosis - Introduce yourself and meet others

Posted by Justin McClanahan @JustinMcClanahan, Apr 25, 2017

Let’s talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles and Spine Health groups, I’ve noticed several members talking about scoliosis, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Get comfortable in your favorite spot, grab a beverage of your choice, and let’s chat. Why not start by introducing yourself?

@kdubois

Would love to talk about this topic! I was diagnosed with scoliosis at about age 12, but I never wore a brace. Though it never got super-bad, I don’t like my posture, so I am scheduled to begin yoga in May as I’ve read that it can help. I also bought a device that is worn that keeps reminding you to sit upright when you slouch, but I haven’t tried it yet.

Unfortunately, my daughter inherited it from me, and she was diagnosed by age 10. After wearing a brace for several years, it still progressed enough to be very visible, and it would have started damaging her internal organs, so in December 2014, at age 12, she had spinal fusion. she has two titanium rods aligning her spine with screws holding them in place. It’s a rough surgery to go through, but her surgeon made it clear that the longer we waited to do the surgery, the harder it would be on her to recover.

The fusion has helped her significantly; we no longer have to worry about damage to her internal organs, there’s no curvature visible at all, and clothing fits her much better. If you didn’t know she had the surgery done, you wouldn’t even know it because her scar is barely visible at all. She still grew some at the top and base of her spine, so she’ll be a nice height in adulthood.

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How is she doing now? I want my 13 years old daughter get the surgery but we still don't know what or where to get this done

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Hello, my name is George and I have had scoliosis for 15 or so years. Mine came about as a result of a side effect of a pharmaceutical called carbamazepine that I took to help control grand mal seizures since I am an epileptic. Unbeknownst to me, the side effect of carbenzapine is that it helps or impedes the ability of the body to absorb calcium and and in my case helps destroy some of your bones. I used to be 6ft 3 in and am now 5 foot 11 in. I guess some shrinkage is always happening with us as we age but, I did not expect that I would ever lose four total inches. The major reason that I have looked into this site is a I was trying to find out if anyone has had any experience with or any knowledge of a procedure that uses a liquid cement injection into balloons in the spine to help keep somebody erect and decrease pain. Any thoughts, suggestions, or ideas to share would be appreciated.

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This is my daughter with scoliosis. I thought maybe you would like to see a face to our discussion.

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@ghill6903

Hello, my name is George and I have had scoliosis for 15 or so years. Mine came about as a result of a side effect of a pharmaceutical called carbamazepine that I took to help control grand mal seizures since I am an epileptic. Unbeknownst to me, the side effect of carbenzapine is that it helps or impedes the ability of the body to absorb calcium and and in my case helps destroy some of your bones. I used to be 6ft 3 in and am now 5 foot 11 in. I guess some shrinkage is always happening with us as we age but, I did not expect that I would ever lose four total inches. The major reason that I have looked into this site is a I was trying to find out if anyone has had any experience with or any knowledge of a procedure that uses a liquid cement injection into balloons in the spine to help keep somebody erect and decrease pain. Any thoughts, suggestions, or ideas to share would be appreciated.

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I just messaged you a huge letter and it erased it all. You were asking me about a cement procedure and scoliosis. No I've never heard of that procedure and I'm pretty sure her doctor will not mention that procedure until she's older. Also your height declining was very good information for me so I can prepare my daughter for what is it going to happen soon. She is really have been worried about that part. I also had a question for you about how are your pain levels. Because she's been in pain almost every single day and her doctors are saying she's fine and it's getting so bad that we had to pull her from school and homeschool her. She's also in a back brace but she doesn't mind wearing thank God. She's just more worried about her height and her pain. I really do wish my messages weren't erased because I had a lot more to say. But if you ever want to talk I'm still learning this website I sent a picture of my daughter cuz I know it helps to put a face to a name. Thank you for listening to me

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@leschan5

How is she doing now? I want my 13 years old daughter get the surgery but we still don't know what or where to get this done

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My thirteen-year-old daughter has scoliosis to she's got a 47 degree angle on her spine. Also she has something called a syrinx near her spine that causes even more pain. She's in a back brace we had to pull her from school and start homeschooling her without her doctor's when school district help. They all keep saying she's fine she's fine she's fine. You as a parent knowo just like me when your kids not fine. Now on your nose about surgery depending on how bad the angle is I would stay away from surgery as much as possible. That's me. My mother was a nurse for 5 surgeons for 25 years and my mom always told me if he can walk into a hospital on your own two feet do not get back surgery. Is your child in a back brace?if not I can point you in the right direction if you live near the Houston area. My daughter got her first back brace and it cause more pain. It took us five different doctors opinions to finally find one that actually listened. And he said that she needed a new back brace that had a plate on the chest do push her shoulders back. and since her insurance already covered the first back brace they would not cover the second. And this great doctor in his own graciousness took his own money and bought her a $3,000 back brace and never charged me a Penny. I'm sorry I couldn't answer your questions but if you ever want to talk about it I'm learning this website and I'll get back to you as soon as I could. Thank you for listening to me

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@veteranspouseinpain

I just messaged you a huge letter and it erased it all. You were asking me about a cement procedure and scoliosis. No I've never heard of that procedure and I'm pretty sure her doctor will not mention that procedure until she's older. Also your height declining was very good information for me so I can prepare my daughter for what is it going to happen soon. She is really have been worried about that part. I also had a question for you about how are your pain levels. Because she's been in pain almost every single day and her doctors are saying she's fine and it's getting so bad that we had to pull her from school and homeschool her. She's also in a back brace but she doesn't mind wearing thank God. She's just more worried about her height and her pain. I really do wish my messages weren't erased because I had a lot more to say. But if you ever want to talk I'm still learning this website I sent a picture of my daughter cuz I know it helps to put a face to a name. Thank you for listening to me

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Beautiful daughter with incredible red hair.
I am 80 years old and a compulsive reader and researcher. Sings to me no matter what ails us these days; there is won or to universal things that always saying to help.
Specifically exercise to keep the muscles strong and support the body. 2nd lay eating a good diet rich in vegetables, multi colored that shtables throats with minimal red meats. Seems like a bit of Turkey or chicken and fish twice a week is preferred. But keep in mind, that comes from a layman and not a physician. I suggest you do your own research and perhaps you will find my guy ideas or not necessarily always true. Best of luck to you and
your daughter. George

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@ghill6903

Beautiful daughter with incredible red hair.
I am 80 years old and a compulsive reader and researcher. Sings to me no matter what ails us these days; there is won or to universal things that always saying to help.
Specifically exercise to keep the muscles strong and support the body. 2nd lay eating a good diet rich in vegetables, multi colored that shtables throats with minimal red meats. Seems like a bit of Turkey or chicken and fish twice a week is preferred. But keep in mind, that comes from a layman and not a physician. I suggest you do your own research and perhaps you will find my guy ideas or not necessarily always true. Best of luck to you and
your daughter. George

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Pardon my dictation, but I think you get the gist of what I'm trying to say.

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@ghill6903

Beautiful daughter with incredible red hair.
I am 80 years old and a compulsive reader and researcher. Sings to me no matter what ails us these days; there is won or to universal things that always saying to help.
Specifically exercise to keep the muscles strong and support the body. 2nd lay eating a good diet rich in vegetables, multi colored that shtables throats with minimal red meats. Seems like a bit of Turkey or chicken and fish twice a week is preferred. But keep in mind, that comes from a layman and not a physician. I suggest you do your own research and perhaps you will find my guy ideas or not necessarily always true. Best of luck to you and
your daughter. George

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My mom I'm always persistent. LOL. It took me for 5 or spine doctors define the one that actually made sense. Thank you for listening. and thank you for saying my daughter's beautiful

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Does a mild S curve cause any issues?

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@rarelybees2889

Does a mild S curve cause any issues?

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I really don't think so bc I don't have one it's my daughter that has it. At hers has been all the way up to I think ,37 degrees and she wears ba back brace. But what I've been told if you have a minor one you have a chance of growing out of it as you get older and have very little very little pain. Like for example standing or sitting for long periods of time. So if yours is minor I think I'll be okay just do things to prevent it from getting worse. Like getting a good expensive bed, learning how to sit up straight like in the olden days stuff like that.

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Hello, I’m Bob 62 y.o. with right thoracic, left lumbar double curve scoliosis. My last measurement in 2017 revealed my curve increasing and at 63 degrees. I am have attending yoga classes for over a year. Last week the instructor stated that I may be developing a third curve in the cervical spine area. I never heard of this before. My Orthopedic has retired. I l live on the southside of Chicago. I can’t get to Mayo until the summer. Any recommendations

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@bobwieler

Hello, I’m Bob 62 y.o. with right thoracic, left lumbar double curve scoliosis. My last measurement in 2017 revealed my curve increasing and at 63 degrees. I am have attending yoga classes for over a year. Last week the instructor stated that I may be developing a third curve in the cervical spine area. I never heard of this before. My Orthopedic has retired. I l live on the southside of Chicago. I can’t get to Mayo until the summer. Any recommendations

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Hello @bobwieler, welcome to Connect. You may notice I moved your discussion and combined it with the existing "Scoliosis – Introduce Yourself" discussion. I did this so the many members actively discussing scoliosis would have a chance to see your message and respond. @bobwieler, how are you doing with the side-effects of your scoliosis? It sounds as though you are quite active, does that help your pain? Did you notice you were having more issues before your instructor mentioned you may be developing a new curve?

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@JustinMcClanahan

Hello @bobwieler, welcome to Connect. You may notice I moved your discussion and combined it with the existing "Scoliosis – Introduce Yourself" discussion. I did this so the many members actively discussing scoliosis would have a chance to see your message and respond. @bobwieler, how are you doing with the side-effects of your scoliosis? It sounds as though you are quite active, does that help your pain? Did you notice you were having more issues before your instructor mentioned you may be developing a new curve?

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Hello Justin, Thanks for moving my discussion to a spot where people can respond. I am active, but have been slowed down by heart Afib. Took over 3 years to diagnose. Low level case, could not see any irregularities on several EKGs. Taking medication, feeling much better, able to take walks, and do yoga. Noticed about a year ago the left side of my back in the center along the left side of spine becoming increasingly painful. Also headaches began occurring about the same time. I also noticed my breathing becoming very difficult. (I have had shortness of breath since I was young ) Instructor asked if I had any headaches and if I did were they located on the left side of my head. Yes I replied to both. I now do poses to help support better breathing and decrease muscle stiffness and started new poses for the cervical area. Pain does decline momentarily but returns in a day. Aspirin is not working like it used to. Sorry about the slow response. Last thing; Spine curve last measurement was September 2017, 63 degree curve.

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My daughter has severe scoliosis and we were considering spinal fusion, but then my mom saw the VBT procedure on the news and I would like more information. She is 15-almost 16 with an S shaped curve 52 degrees on the top and 30 on the bottom curve.

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