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?

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.

REPLY
@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

Hello @sharon2000, I would like to add my welcome to @lilgrizz‘s. You may notice that I moved your discussion and combined it with an existing discussion on Scoliosis. I did this because I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing. If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and so you can meet some of our other members talking about living with scoliosis.

Also, here are a few other discussions about scoliosis on Connect:

– Scoliosis & Sleep Number Beds, https://connect.mayoclinic.org/discussion/scoliosis-and-sleep-number-beds/
– Degenerative discs and scoliosis, https://connect.mayoclinic.org/discussion/degenerative-discs-and-scoliosis/

REPLY
@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

@sharon2000 It surely does hurt! There is now that hump on my right shoulder too. I went from 5’8″ to 5’4″. At least I am shrinking and not melting. My pelvis is twisted as well. Doctor and grocery sum it up for me too. This cold has not helped either. Not as severe in this area as it is farther east. For now I am just working with a pain specialist and an orthopedic doctor.
My scoliosis is a result of a broken femur when I was 20-I am now 66. Did not have symptoms until 2008. At my age it is mostly deal with it. Also DDD of the neck and lower lumbar from doing a lot of lifting. Currently not taking any meds other than OTC’s when necessary.
Chronic pain is not fun and can be a lonely life because I look healthy I can’t be in pain. I know others do not understand and this is okay.

REPLY
@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

Had neck surgery as I lost my ability to write. Arms and hands almost useless. Better after surgery but not perfect. Dr not God. Entry through back. Have bulge and daily need OTC help. Would do it again as I am not ready to give up living.

Liked by Parus

REPLY

I only have mild scoliosis of the upper thoracic region with not a very large curve but it affects my hands and arms a bit now and again. I also suffer with a d fracture in the upper thoracic. I have found that using low-level laser therapy has helped. I live in the UK and some chiropractors use it here.It reduces the inflammation which for me is a really big issue and main causation of the pain.

REPLY

@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.

REPLY

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]

REPLY

I agree with the seat. They makes a big difference. I love to drive my sons car with the Lumbar & heated seats. If only the lumbar would push in just a tad bit more it would be perfect & I would never come out of the seat.

REPLY
@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

Jump to this post

To Gailb. Have the same history and manage pain with otc. Grateful for the things that I can do.

REPLY

Hello everyone saw my Ortho and he’s doing a SI injection on 1/29. I sure hope this one helps. Reading a lot about sacroiliac and it’s sounds so much where a lot of my pain lives. I can take you exactly to the spot that hurts on my hip. Anyone else have the injection & did it help?
Regardless with all the stories I’ve read I do not want back surgery unless I have no other choice. He did more X-rays on my neck. He’s trying to set up my neck surgery. My surgeon said surgery would be at Atlanta Medical Center. But that’s Wellstar and I’m not sure they would accept my insurance. So I guess I’ll wait & see what happens. I sure hope I don’t have to change doctors.

REPLY

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

REPLY
@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

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!

Liked by muffincat

REPLY
@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]

Jump to this post

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?

REPLY
@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

http://www.hunter.cuny.edu/pt/the-schroth-method-of-management-of-scoliosis
https://nmtcenter.com/description/
https://www.sanomed.de/de/korsettversorgungen

REPLY
@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]

Jump to this post

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

REPLY
Please login or register to post a reply.