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?

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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@johnjames Thank you for your input on scoliosis and especially for your 40 years of Army service !!!!!! I have been Dx with Myotonic Dystrophy type 2, so I have been in weekly therapy for over 3.5 years and I see my therapist tomorrow. I will go over with him some of the stuff you bring up. In particular you mention it was recommended to “sleep more upright and to swim as much as possible,” I reside in a retirement community and have free access to a pool and indeed I did swim and/or do prescribed exercises about 5 days a week for about 3 years. But last year I started to walk and since Aug of last year I have now logged over 100 miles. I apparently have had scoliosis for many years but just recently it has gotten worse. I got a Sleep Number brand bed several years ago and I was told since I sleep on my side to use a low number, so I had it set for 30 to 45 where 100 is max inflation of the mattress. Recently i have started to sleep with it set at 55-65. Via Connect, I recently asked if anyone has developed scoliosis or has gotten worse with a SN bed. No one responded so I assume the answer is “no”. Did they ever say anything about walking as your primary means of exercise? Though I am a female and my weight is also within the normal BWI range but on the high side, I
have to find out if I too should get to the low side of the BWI range. That thought scares me as I’d have to get a whole new wardrobe! Incidentally, though my back gets tired, I do not have pain. And yes, God bless you also. @gailfaith

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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Thank you for your kind words- My DR gave me a list to follow. ( swimming, be as thin as possible – but not to thin, Yes I have had heart pain as well- and still do- I had a heart attack almost a year ago- But The Heart Doctor from the Mayo Clinic- told me she believes it is from my over exposure to Agent Orange in Viet Nam- I was there twice and was diagnosed with Agent Orange Parkinson’s. But both issues didn’t help much either. However- She found very little damage- which is not really damage ( which sounds like a conterdiction I know) But The chemicals play a confusing role in Heart attacks-She says. And the Scoliosis also plays a role – how much she doesn’t know at this point but I see her in one month. I do swim and it is the best ( I have been told by at least 4-6 doctors over the last three years. No stress on your body or your back- I pray that helps a little- but believe me I’m not an expert- I’m still learning and I will until God takes to His home someday- but I hope I can stay around awhile to see my grand kids grow up- like all of us I’m sure. Have a peaceful night. jjames.

Hi,
I could reply to the stories above that I wish my doctors told me 15 years earlier that a specialized scoliosis training program exits, to correct your curves and posture. It’s called ‘Schroth therapy, after a German scoliosis patient Kathatrina Schroth who worked it out. I’m from Europe and this therapy is teached in a few European countries to fysiotherapists who want to specialize in woking with young and adult scoliosis patients. In the beginning, it’s quite a heavy work out, using bars, a therapy ball to sit on, strips and your breath and muscles. But, it works. My goal is to stop further progression and to diminish pain and rib and pelvical dislocations. I follow therapy in a one to one setting in the Netherlands, but I know many patients go for a intern training some weeks to Germany and then keep on training at home : https://www.asklepios.com/bad-sobernheim/patienten/anmeldung/international-patients/

@lauralee

I was diagnosed with scoliosis in 1984. I had surgery with a Harrington rod inserted. I was in my 30’s when I had the surgery and I will share I experienced much pain. Now I’m experiencing some heart pain that brought me to ER 3 times over a 4 year period. I saw a heart specialist 5 days ago who ordered a CT Angiogram; my heart is fine, however, the heart pain is musculoskeletal not from the heart. I researched scoliosis and found that my type of scoliosis can move the rib cage and press on the heart and lungs. In my opinion this is what is happening regarding the pain in my heart. I have an appt to see a scoliosis specialist in two weeks. I want to know what I could do to stop the ribs from pressing on my heart. Is anyone else having this problem? As I get older the back pain gets worse.

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I am having these problems also. It is – uh – yucky feeling and scary. (So far) no punctures or anything – just discomfort/pain. I had surgery in ’74 and now am 57. If I find a scoliosis specialist, or if I find out anything, I will report here.

@lauralee

I was diagnosed with scoliosis in 1984. I had surgery with a Harrington rod inserted. I was in my 30’s when I had the surgery and I will share I experienced much pain. Now I’m experiencing some heart pain that brought me to ER 3 times over a 4 year period. I saw a heart specialist 5 days ago who ordered a CT Angiogram; my heart is fine, however, the heart pain is musculoskeletal not from the heart. I researched scoliosis and found that my type of scoliosis can move the rib cage and press on the heart and lungs. In my opinion this is what is happening regarding the pain in my heart. I have an appt to see a scoliosis specialist in two weeks. I want to know what I could do to stop the ribs from pressing on my heart. Is anyone else having this problem? As I get older the back pain gets worse.

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Thank you

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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Hi all,
Gail is making reference to this discussion where she asks for advice about adjusting Sleep Number beds

– Scoliosis and Sleep Number beds https://connect.mayoclinic.org/discussion/scoliosis-and-sleep-number-beds/

If anyone has any thoughts or experiences, please add them.

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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Boy if anyone has has found a- way to sleep with Scoliosis – please let me know, I have not slept for months, only a couple hours because of the pain, and I have two the form pads on top of our mattress and I still can’t sleep. Thanks jjames

Liked by Ardi

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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Thanks for your kind words- and yes, my Dr. said walk as much as I can-along with swimming, the main reason is my spine was damages from the war, and now it is almost 40 % bend to the lower left- as of last month- so walking is hard because I’m so bend over- but we still need to try-right. You know-I believe God doesn’t give you more -than we can’t handle ( with His help) but I was depressed for weeks when I found out I also have restrictive lung disease- and there is no real treatment, except I have to use a Ventilater to breath at night- every night. Since I don’t sleep much -I try and pray over the noise of the machine, I remember king David praying to God about the nights of his depression and how God raised him up and gave him peace- that only the Lord can give. I remember in Viet Nam-when I was in the infantry- when the shooting started, I could hear soldiers praying out loud from everywhere – including my self. After one sees the face of death in any situation, only God can give us the peace we really long for- the world has nothing to offer us but pain and to depend on self- well, that does not work, trust me I tried that once and I fail on my face. The last 35 years I have served as a Army Chaplain -in this war and now I talk to soldiers who are longing for a reason to live anymore- I understand the depression and how it affects our self worth – I can’t do life alone without His help and conviction every hour. I thank God He gives broken people a second chance- and believe I’m broken and need a real Doctor- and we all know who that is. Thank you for letting me share, its humbling to be apart of this group of wonderful people- who open their lives so we all can learn from each other, jjames

Liked by Ardi

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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it will depend on everyones ‘twist’ but I find the best place is a recliner chair.. I got a huge one back 2005 and even with my now new electric bed, will on a bad day accept the falling asleep in the chair and stay there. but I have other ouchies apart from my silly back and hip
It must be really hard , I am lucky mine is mild..
this might bring a wee smile.JJ. Back when I was a teenager, and doing my nursing training. I was walking down the aisle in the church to get communion, in those days our shoes had those metal toe plates and heel plates to save the sole!! The next day I saw the priest as he was visiting patients and he said to me. I always know when you are attending mass as you dont have a balanced walk so I hear the click and then clack.. instead of click click.. That was the first time I realised that I had a ‘shorter leg than the other from the slanting pelvis.. I then had a good chiropracter who had been a physio [I think you call them PT] and he said always lie straight and walk tall, the pain will be less, and Id better control my back problems.
That of course only pertains to those at the beginning of their scoli journey and with mild trauma

Liked by Ardi

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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@johnjames Hi again. Initially I thanked you for your 40 years of serving the US in the Army. But as a Christian myself, I am so glad that you had the opportunity to lead so many to the Lord and eternal life that comes ONLY by accepting Jesus as one’s Savior. I sometimes wonder if anyone really considers how long eternity is and where they don’t want to spend it! But back to “medicine”. I assume you saw my input on Sleep Number beds. I am not recommending them or telling you to avoid them as the jury is out on scoliosis and SN beds, at least from my experience with mine. It seems I must have a high tolerance for pain, I had a huge kidney stone (16 mm) with only slight discomfort. But one of my doctors said when he had a K.stone, he was rolling around on the floor in pain. However just a few days ago, I took my new scooter to the local grocery. store over a very bumpy gravel topped path thru corn fields. It was my 4th trip to this store and I had no adverse effects from my first 3 trips, so I am not sure that was the cause of my 8/10 rating for pain the next two days on my right side from my calf to my R hip but it traveled that entire distance but was never in two places at the same time! Could not put any weight on my right leg. So maybe I don’t have a high tolerance for pain. And I’m sorry I can’t offer any suggestions as to getting a good night’s sleep as most nights I sleep VERY well, but yes, there are a few nights when I feel I didn’t sleep well at all, but that is occasional not routinely. So I am sorry to hear that you and sleep are strangers. Hopefully some others will suggest what DOES work for them! A side thought that you will appreciate: I heard someone’s definition of eternity. If all the oceans of the world were filled with sand and a solitary bird every 1 million years removed one grain and built a mountain with all that sand, that would be the equivalent to 1 second of eternity!. Incomprehensible! Isn’t it comforting to know that in heaven for that length of time we will never have ANY pain! Oh, how short our time here is in comparison. So take comfort in knowing that there will be an end to your pain. I’ll pray for you and your lack of sleep. in the here and now! @gailfaith

For the people who are in pain due to scoliosis. I was given a prescription Gabapentin 100mg for my surgical pain: I soon realized the rx helped with my back AND helped me go to sleep. I don’t know anyone who has scoliosis therefore this connect group has been helpful to me. I pray those who read this will try the rx. Blessings to all of you.

Liked by Ardi

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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I cannot find where to unsubscribe to your emails.  Will you make it easier?  This is a bunch of crap!

@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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IF you take the time to look you will see the option to unsubscribe on the email down the bottom of the post. its in the middle on my screen and been there ever since I joined.. Sorry you are having a bad day and unable to just press delete if things are that bad

@lauralee, I was prescribed Gabapentin for my back pain, 300mg. I had to get off it after about 6 months because I was losing big chunks of memory and felt stoned alot. I hope it works for you, but please be careful. I found after I withdrew from it that I had less pain without it than I did with it. I think it kept me “out of it”so much that I kept re-injuring my back by doing too much. You can find other information about Gabapentin in the Chronic Pain group. I have scoliosis, and also had a laminectomy on my L5-S1 in 12/16. My L4 is herniated as well, and I have a compression fracture at my C7. My surgery last year has resolved all the pain I was having on my left side. However, I continued to have bad pain on my right side. They talked about surgery for my L4, but it would involve rods and pins in my back, so I decided to try alternatives. The thing that had resolved nearly all my pain on the right is called Active Release Technique (ART). Do some research on it, and see if it might help your scoliosis. Good luck, Gail B

Liked by Ardi

My name isMarie and gabapentine did the same for me. It was awful. Did ART relieve your back pain?
My Dr. is talking about a 2nd fusion and I would like to find out more about ART.

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