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?

@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!!!

Liked by muffincat

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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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@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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Hi,Have you seen this on the Schroth Method? 
USA

USA Dr. Marc Moramarco, DC Official Schroth Best Practice Advanced Instructor in the USA Provider of the Gensingen B… http://www.hunter.cuny.edu/pt/the-schroth-method-of-management-of-scoliosis

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@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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Thank you for the information, looking into it.

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@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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I've been researching for my 15 year old son who has a much more moderate curvature but there's so much horible stuff online about braces and surgery and your child is just 12 so perhaps you can avoid surgery?  I am no expert but I was disappointed to see how there doesn't seem to be an agreed upon protocol to treat scoliosis..  I may take my son to this guy for 4 days in June:
Schroth Method | Boston| Massachusetts| New England | SCOLIOSIS 3DC℠

Schroth Method | Boston| Massachusetts| New England | SCOLIOSIS 3DC℠ Scoliosis 3DC, located near Boston offers Schroth Method instruction for adults and adolescents with scoliosis.

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@sharon2000

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.

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I had my SI injection and so far it has not helped. As soon as the numbing medicine wore off that constant pain was back. But the pain in my left leg has gotten worse. I believe the doctor said my next step will be facet injections. Maybe they will work. I’m running out of options.

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@sharon2000

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.

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Sorry to hear, I did actually think they can take several days to do the trick .. lets hope that is the case Sciatic pain is so hard to cope with

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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 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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I have a very similar situation. My recommendations gor sleep include several option, not to use at the same time: 1) try drinking warm milk or hot tea at bedtime…there is actually a tea called “Sleepy Time Tea” at the grocery store; 2) take melatonin; 3) take a few drops of CBD under your tongue at night…it is calming. I bought mine at the health food store. It is the legal part of marijuiana. Sleep tight!!

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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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