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 group, 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?

@muffincat

Its so hard to sort ones self out when there is a bundle of problems. Just which one do we prioritise tonight and which one will be the leader in the morning. I am amazed that you can even type with that bouquet of medications. but realise you have to have them unless you could wean off with a great team. And it would take over 6mths or longer.
The only suggestion but it sounds like you are trying hard to do that is to set a goal, to have the clock organise your life, rise and do chores by a certain time, have frequent rest periods and slowly reduce them. When there is energy use it when there isn’t then sleep off the lethargy. I have days where I just write it off as my recliner is the only place that seems to give enough energy for me to just breathe. I hope someone has an answer for you

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Again…the whole body is connected.

@amberpep

Hi all ….. my oldest daughter, who is now 46 was diagnosed with scoliosis at about age 8 or 9. I knew something was wrong because one of her patellas protruded considerably farther than the other. At the time, our then Pediatrician sent us to an Orthopedic Surgeon who had a P.T. woman from Germany …. her name was Annaleise and she was a wonderful human being. Each time we went, first weekly for about a year, then every 2 weeks, and then monthly. she gave my daughter a series of exercises, adding an additional one each time we went. I sat there and wrote each on a card, and drew a stick figure showing how it should be done. She and the Orthopedic Surgeon said that if they could just get her passed the time her bone plates were growing, it would not get worse. Each time we went the P.T. “measured” her curve (it’s an “S” shape) …. you all probably know how they do that. When she went through the growth spurt (she’s now 5’10”) she had to do them 2x a day …. AM and PM. I would sit with her to be sure she did them right. They weren’t easy and they weren’t fun, but by the time she was about 18 or thereabouts, her bones had formed to the point where she only had to do them once a day. God bless her ….. she was so very faithful doing them, and I think that was because she was terrified she’d need the Herrington Rods. She obviously still has scoliosis, but nothing changes any longer. She’s careful though about what she wears in a tank top or bathing suit, making sure it’s not as obvious as it could be. She’s had 2 children and even with the pressure of the weight of the baby in her abdomen, no change. Sure, I imagine surgery would have made it straight, but no one knows it’s there unless she wears something that allows it to show.
To this day, I thank God for Annaleise, and for my daughter who was so faithful in those exercises all those years.
abby

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That sounds like it might have been the Schroth Method, as she was German. It seems to be the protocol in Europe but not to be as widely known here. Non-invasive, based on exercises people can learn and do themselves.

@mamabear17

I was born with scoliosis (adopted). I fell about 15 yrs ago & fractured my left clavicle. Broke right wrist in 1996 % developed RSD/now called CRPS. I did hand therapy, pain help, neurologist & therapy.

I fell on my face in street last 3/17. Since then, l slowly see my neck, shoulder & back issues get worse.

I am on Effexor 150 mgs, Oxycodone 325 mg 2x a day, Diazapam 10 mg, Mirtazazapine 30 mg, Metoprolol 50mg, Dilt-xr 180 mg, Melatonin 20-40 mg a day.

I feel tired all the time & doctors say it’s normal, but l feel pain every day. I do PT exercise at home & walk approx 6-8 miles a week. I meditate 2x or more a day. Limit cell time on social media/off by 9pm. My social life suffers. Damned if l do, damned if l don’t.

Have trouble sleeping. Any running out of what to do.

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@mamabear17, thank you for introducing yourself to the Scoliosis members, there are a lot of great members in this discussion and I am glad you here to meet them. I think you may also be interested in the following discussion as well as it is Connect members discussing RSD/CRPS, https://connect.mayoclinic.org/discussion/rsdcrps/.

HILSY – I wonder why it isn’t used more here? It’s effective. I guess once again because we are so far behind some of our European counterparts.
abby

@muffincat

Its so hard to sort ones self out when there is a bundle of problems. Just which one do we prioritise tonight and which one will be the leader in the morning. I am amazed that you can even type with that bouquet of medications. but realise you have to have them unless you could wean off with a great team. And it would take over 6mths or longer.
The only suggestion but it sounds like you are trying hard to do that is to set a goal, to have the clock organise your life, rise and do chores by a certain time, have frequent rest periods and slowly reduce them. When there is energy use it when there isn’t then sleep off the lethargy. I have days where I just write it off as my recliner is the only place that seems to give enough energy for me to just breathe. I hope someone has an answer for you

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MUFFINCAT ….. I agree with you …. she (or he) is really on a huge dose of strong medications. Like you said about typing, I’m amazed she can walk …. to me that seems overload, but then I’m no doctor.
abby

I did find some additional information about the Schroth method being used in the U.S. here:
https://www.hss.edu/conditions_schroth-method-treatment-for-scoliosis.asp

@amberpep

Hi all ….. my oldest daughter, who is now 46 was diagnosed with scoliosis at about age 8 or 9. I knew something was wrong because one of her patellas protruded considerably farther than the other. At the time, our then Pediatrician sent us to an Orthopedic Surgeon who had a P.T. woman from Germany …. her name was Annaleise and she was a wonderful human being. Each time we went, first weekly for about a year, then every 2 weeks, and then monthly. she gave my daughter a series of exercises, adding an additional one each time we went. I sat there and wrote each on a card, and drew a stick figure showing how it should be done. She and the Orthopedic Surgeon said that if they could just get her passed the time her bone plates were growing, it would not get worse. Each time we went the P.T. “measured” her curve (it’s an “S” shape) …. you all probably know how they do that. When she went through the growth spurt (she’s now 5’10”) she had to do them 2x a day …. AM and PM. I would sit with her to be sure she did them right. They weren’t easy and they weren’t fun, but by the time she was about 18 or thereabouts, her bones had formed to the point where she only had to do them once a day. God bless her ….. she was so very faithful doing them, and I think that was because she was terrified she’d need the Herrington Rods. She obviously still has scoliosis, but nothing changes any longer. She’s careful though about what she wears in a tank top or bathing suit, making sure it’s not as obvious as it could be. She’s had 2 children and even with the pressure of the weight of the baby in her abdomen, no change. Sure, I imagine surgery would have made it straight, but no one knows it’s there unless she wears something that allows it to show.
To this day, I thank God for Annaleise, and for my daughter who was so faithful in those exercises all those years.
abby

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I had spinal fusion with the Harrington rod in 1974 when I was 14. Military doctors performed the 6 hr surgery at Walter Reed hospital. It was a very long year of recooperation for a developing teenager. I could not sit down for a year because my rod went so far down the bottom of my spine. I am now in my late 50s and I am forever grateful for what they did for me. Although in the 70s spinal fusion was so much more primative than it is today.. mine has been in me for 44 years now and my spine is fused into a solid bone. I have awesome posture and am very proud of my scar that is the entire length of my back. I call it my battle scar. The doctors that operated on me were my heros. I had a very badly s shaped spine and it is pretty much straight today. You learn to adapt to what you can or can’t do after this surgery and even though at 14 it was humiliating I am forever grateful to the doctors and my parents for making me have the surgery.

@amberpep

HILSY – I wonder why it isn’t used more here? It’s effective. I guess once again because we are so far behind some of our European counterparts.
abby

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There seem to be a few places around the country including that provided by the volunteer mentor. However, the orthopedist my son saw said there’s nothing he can do about his condition or to prevent it from getting worse. He’s only around 20 degrees as I mentioned but may still grow as he’s 15 years and 5 months old only. In any case, we’ll try Schroth this summer because I want a tool for him to manage this that he can use his whole life, if needed. https://schrothbestpractice.com/

@amberpep

Hi all ….. my oldest daughter, who is now 46 was diagnosed with scoliosis at about age 8 or 9. I knew something was wrong because one of her patellas protruded considerably farther than the other. At the time, our then Pediatrician sent us to an Orthopedic Surgeon who had a P.T. woman from Germany …. her name was Annaleise and she was a wonderful human being. Each time we went, first weekly for about a year, then every 2 weeks, and then monthly. she gave my daughter a series of exercises, adding an additional one each time we went. I sat there and wrote each on a card, and drew a stick figure showing how it should be done. She and the Orthopedic Surgeon said that if they could just get her passed the time her bone plates were growing, it would not get worse. Each time we went the P.T. “measured” her curve (it’s an “S” shape) …. you all probably know how they do that. When she went through the growth spurt (she’s now 5’10”) she had to do them 2x a day …. AM and PM. I would sit with her to be sure she did them right. They weren’t easy and they weren’t fun, but by the time she was about 18 or thereabouts, her bones had formed to the point where she only had to do them once a day. God bless her ….. she was so very faithful doing them, and I think that was because she was terrified she’d need the Herrington Rods. She obviously still has scoliosis, but nothing changes any longer. She’s careful though about what she wears in a tank top or bathing suit, making sure it’s not as obvious as it could be. She’s had 2 children and even with the pressure of the weight of the baby in her abdomen, no change. Sure, I imagine surgery would have made it straight, but no one knows it’s there unless she wears something that allows it to show.
To this day, I thank God for Annaleise, and for my daughter who was so faithful in those exercises all those years.
abby

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wow, I remember reading about the Harrington rod and the restrictions with them. So good to hear tho’ very hard at the beginning it has allowed you to have a modified freedom for all those years. My daughters were born in 1974, so it was a special year for many reasons

@besaple

Hi my daughter was just diagnosed with Scoliosis and i am scared to death. she has a 70 rotational curve i think that is right . and the first doctor we talked to wants to do spinal fusion and rods she is 12 and i am worried about all the pain and 50% of movement loss.. they said they would have to go down to the L3. I have been looking around on the internet and have come to terms with some sort of surgery for the degree of curve she has but i found something called VBT Vertebral Tethering.. does anyone know about this and the outcome? also if they could do it on a rotational curve? any advice or your own experience would be great . Thanks

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For reasons that I don’t understand, I receive posts re: scoliosis— and I am not interested.  Please help stop this particular traffic.Thank you,

@besaple

Hi my daughter was just diagnosed with Scoliosis and i am scared to death. she has a 70 rotational curve i think that is right . and the first doctor we talked to wants to do spinal fusion and rods she is 12 and i am worried about all the pain and 50% of movement loss.. they said they would have to go down to the L3. I have been looking around on the internet and have come to terms with some sort of surgery for the degree of curve she has but i found something called VBT Vertebral Tethering.. does anyone know about this and the outcome? also if they could do it on a rotational curve? any advice or your own experience would be great . Thanks

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Hello @shenriq – if you click the View & Reply in the email notification and scroll to the top of the discussion, then you can click the +Following link and you can select to unfollow the discussion. You can also click the Unsubscribe link at the bottom of the email notification you receive.

John

@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I went to a neurosurgeon yesterday. He is the first doctor I’ve seen in the past years that ask to look at my back and within 5 minutes of meeting him. However he is the only neurosurgeon the other doctors I’ve seen were orthopedic surgeons. The other doctors only wanted to look at my MRI’s. My new doctor who had already looked at my images & then my back told me I have flatback syndrome. I have never had back surgery it just happened naturally. Having CT’s of neck & lumbar next week. Already know I need surgery but if it’s scoliosis flatback surgery I will need to go to Atlanta for the surgery. If it’s a bone turned up he said he could do that here at the local piedmont hospital but if I need rods he said they can’t do that kind of surgery locally. Any advise? I’m 52 female.

@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I would suggest seeing Neurosurgeon, Dr. Jeremy Lee Fogelson at the Mayo Clinic. He is honest and accurately diagnosed me with failed back surgery syndrome. I do not advise rods. My scoliosis rod surgery took 23 hours and I had several complications. I now have radiculopathy, a painful coccyx, my back hurts, my left foot is purple and cold, I have costochondritis, I have ischial tuberosity pain . . . It has been 8 years.

@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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Thank you for posting this. I am trying to decide about proceeding with spinal fusion (c6-7) as well as lumber fusion (L4-L5). Where did you have your back surgery done?

@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I have never had back surgery but still wound up with flat back syndrome. I’m sure it is from the scoliosis. From what I understand they will be taking a section of my spine out like a wedge to straighten up spine & the rods will help hold in place. I was thankful this doctor actually looked at my back. I have had 8 injections in 9 months & none have helped. Tired of being prodded with no result.

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