Scoliosis - Introduce yourself and meet others

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?

Interested in more discussions like this? Go to the Spine Health Support Group.

Hoping the injection works well for you and makes everything settle down.
AS an ousider or is that alien?
to the american insurance system.. I sure would be screaming at the company if it insisted on me swapping surgeons. I have never understood how the healthcare culture has accepted such restrictions. Best wishes in sorting out the neck problems

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@sharon2000

Hi, anyone have chronic low back & hip pain with scoliosis? My orthopedic wants to prolong back surgery as long as possible said at my age (53) I will need surgery again in 10 years. I have degenerative disc and 4 bukdging disc. Expecting neck surgery this month. Right arm & hand go numb when I try to use and sometimes just goes numb. Anyone else had these issues? Tks.

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Hi Sharon (and Lillgrizz),

I recognize your problems with hip pain, kneeproblems and lower back pain (and degenerations of discs). I'm 48 (and from the Netherlands) and having the same problems. I have two severe curves (S) of around 54 degrees. The pain and hypermobilty became so worse, that I also went back to the orthopedic doctor a few times the last couple of years. He said, that he wouldn't do a surgery until It got so worse that I would fall to the side when walking. He'd just rather not operate, because there's no guarantee that I will be painfree afterwards. Pain is not an argument for operating, he said. Bang!
I was diagnosed with a 'snapping hip', 'trochantor major' problems and the only thing he could do was sent me to a rehab center. Last year I started to wear a kneebrace, a pelvis brace etc. But the pain on the front side of my right hip and also the right knee stayed.

Luckily, I read someting about Schroth therapy in late 2016. It's a German form of Scoliosis therapy invented by a Scoliosis patient in the fifties, Katharina Schroth. It appeared that in Holland there are a handfull of Schroth-therapists, one of them in a city 30 minutes from where I live. January 2017 I started therapy. Although it's though and difficult in the beginning, I start to see benefits of it now. It normaly takes a year, or 1,5 before you see result, but these are in general really good. For childeren and adults. It can prevent youngsters havinf to wear a brace. The goal is to prevent the curves from getting bigger, sometimes even smaller and prevent pain. It's a so called 3D therapy. You learn to derotate your Scoliosis in all directions.
This therapist also advised me to see a German doctor (from the MVZ Bad Sobernheim), and he prescribed me the Swiss Cubin brace to release pain and stretch the spine. Last week I went to Germany to get it made (you can also Google 'modifiziertes rahmenstutzkorset'. I only have to wear it when I want to, for support. The therapy has to do the rest.

For young people there is a really good alternative to the tradional Milwakee brace called the 'Cheneau brace'. This brace is based om the ideas of Schroth therapy. And must be combined. The results are much better than with the tradional brace. On a scan, my curves seem to have lessened since I started Schroth Therapy. I feel that i'm getting stronger and now I know how to correct my back.

I also discovered a doctor in my area specialised in neuro muscular therapy (sometimes called prolotherapy). I got series of thin needle injections with sugar solution as well as dry needling. After the last session, a huge subluxation happened in the area of my right shoulder and upper ribs. That worked! I've been able to walk again (long!) without pain since then! The constant hip pain is almost gone and the lower back pain due to a degenerated disc is getting better. I will continue this therapy.

I would encourage you to dig into this kind of options!

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@muffincat

Wow reading this thread I just wanna say "stop talking about me" I am not as severe as you, things do get better.[for a while] I recently bought myself a car that the one criteria was the right shaped seat so it didnt increase the angle of my hip when sitting [flat seat ] as the pain of getting out of mine and esp my daughters which is a low bucket seat was crippling and brought tears to the eyes on getting out. [and yes walking like a granny for the first 100M] I intend to go to my PCP/GP this year [N.Ys resolution] and ask for an Xray of back and pelvis to see if the twist has increased, or that uncle arthur has moved in [ arthritis]

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Hi,
I have the same problems with car seats. I avoid sitting in cars as much as I can, resulting in not going to see my family anymore...We're looking for another car now. The best options chairwise seem to be a Volkswagen Caddy and a Opel Meriva. What car did you find?

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@sharon2000

Hi, anyone have chronic low back & hip pain with scoliosis? My orthopedic wants to prolong back surgery as long as possible said at my age (53) I will need surgery again in 10 years. I have degenerative disc and 4 bukdging disc. Expecting neck surgery this month. Right arm & hand go numb when I try to use and sometimes just goes numb. Anyone else had these issues? Tks.

Jump to this post

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@muffincat

Wow reading this thread I just wanna say "stop talking about me" I am not as severe as you, things do get better.[for a while] I recently bought myself a car that the one criteria was the right shaped seat so it didnt increase the angle of my hip when sitting [flat seat ] as the pain of getting out of mine and esp my daughters which is a low bucket seat was crippling and brought tears to the eyes on getting out. [and yes walking like a granny for the first 100M] I intend to go to my PCP/GP this year [N.Ys resolution] and ask for an Xray of back and pelvis to see if the twist has increased, or that uncle arthur has moved in [ arthritis]

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For me, I found the Honda Crossroads has the idea seat. its like a mini Hummer, or baby Landrover. Not sure if its available in every country, I guess its a case of going to the car sales lots and sitting, then going for a test drive. THEN check the rest of the car out

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@muffincat

Wow reading this thread I just wanna say "stop talking about me" I am not as severe as you, things do get better.[for a while] I recently bought myself a car that the one criteria was the right shaped seat so it didnt increase the angle of my hip when sitting [flat seat ] as the pain of getting out of mine and esp my daughters which is a low bucket seat was crippling and brought tears to the eyes on getting out. [and yes walking like a granny for the first 100M] I intend to go to my PCP/GP this year [N.Ys resolution] and ask for an Xray of back and pelvis to see if the twist has increased, or that uncle arthur has moved in [ arthritis]

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I actually have a truck but I drive my sons car when I can. Again, only to the doctor & the grocery store. It’s not worth the pain for me to go anywhere else. My son has a Ford Fusion. I agree on the Landrover like @muffincat I had a Rangerover Evoque & the seat was great. But dang those repair bills are high. Thus the Ford F-150 I have that I dont drive much anymore either :—(

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@sharon2000

Hi, anyone have chronic low back & hip pain with scoliosis? My orthopedic wants to prolong back surgery as long as possible said at my age (53) I will need surgery again in 10 years. I have degenerative disc and 4 bukdging disc. Expecting neck surgery this month. Right arm & hand go numb when I try to use and sometimes just goes numb. Anyone else had these issues? Tks.

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Thanks! I loved when my PT would have me on the table & twist me certain ways & pressed me down. It really stretched the muscles & usually felt really good. But it didn’t change anything. Next morning right back the same way so my doctor discontinued.

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@muffincat

Wow reading this thread I just wanna say "stop talking about me" I am not as severe as you, things do get better.[for a while] I recently bought myself a car that the one criteria was the right shaped seat so it didnt increase the angle of my hip when sitting [flat seat ] as the pain of getting out of mine and esp my daughters which is a low bucket seat was crippling and brought tears to the eyes on getting out. [and yes walking like a granny for the first 100M] I intend to go to my PCP/GP this year [N.Ys resolution] and ask for an Xray of back and pelvis to see if the twist has increased, or that uncle arthur has moved in [ arthritis]

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Does anyone know of any cushions designed specifically for car seats that actually help. In addition to my back, I find the suspension system on our Ford Escape to be totally inadequate for handling bumpy roads!!!

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@muffincat

Wow reading this thread I just wanna say "stop talking about me" I am not as severe as you, things do get better.[for a while] I recently bought myself a car that the one criteria was the right shaped seat so it didnt increase the angle of my hip when sitting [flat seat ] as the pain of getting out of mine and esp my daughters which is a low bucket seat was crippling and brought tears to the eyes on getting out. [and yes walking like a granny for the first 100M] I intend to go to my PCP/GP this year [N.Ys resolution] and ask for an Xray of back and pelvis to see if the twist has increased, or that uncle arthur has moved in [ arthritis]

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I had one of those netting lumbar supports in the car as well as on the chair for the computer, cushions didnt do it for the lower back, also they are cheap like 2x $15 NZ. I had fiddled with my daughter's passenger seat but the back just didn't come out sufficiently to push my back in, where I wanted it.

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@muffincat

Wow reading this thread I just wanna say "stop talking about me" I am not as severe as you, things do get better.[for a while] I recently bought myself a car that the one criteria was the right shaped seat so it didnt increase the angle of my hip when sitting [flat seat ] as the pain of getting out of mine and esp my daughters which is a low bucket seat was crippling and brought tears to the eyes on getting out. [and yes walking like a granny for the first 100M] I intend to go to my PCP/GP this year [N.Ys resolution] and ask for an Xray of back and pelvis to see if the twist has increased, or that uncle arthur has moved in [ arthritis]

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Thanks, muffincat. Start PT again soon - maybe they'll have a suggestion!!!

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