Scoliosis - Introduce yourself and meet others

Hello, and thank you Justin for making a discussion about this!

I had a Harrington rod and spine fusion in 1974 when I was 14.
I am 57 now and I have not had problems until now. BUT I didn't know about "taking care of yourself" and I have always done manual labor, been in a car wreck, did drugs in my youth that kept me up for days. It's amazing I have done as well as I have.
I went to an orthopedic surgeon last year because of pain, and he practically pushed me out the door, saying "We don't do that surgery anymore, these days."
I told him that if I was reincarnated, I would remember his wisdom; but what could I do now? He said he could send me to a pain clinic.

I came here looking for exercises for people with Harrington rods, which I can't find anywhere. But I feel I should report what that doctor said, even though I don't want to. BUT he was not a scoliosis expert or anything.........and doctors certainly make mistakes also.

One more thing - my back has become more crooked in the last few years, in x rays one can see it also. Curving above and below rod. General prac doc said bone deterioration above and below rod, from time. One leg is now shorter, which I never noticed before. My ribs are what feel scary. I am going to try to google what people mean in here when they say their ribs get dislocated.

@ardi, welcome to Connect and thank you for joining the scoliosis discussion and sharing a bit more about yourself.

I would like to invite @sutherlin, @suee, and @recoverychris to share their thoughts on exercises for people with harrington rods, as well as continued health problems around the top and bottom of the harrington rods.

@ardi, I can tell you have a bit of sarcasm to you when you said you told your docotor, "If I am reincarnated, I will remember your wisdom." I have to admit as a sarcastic person, that gave me a chuckle. You also mentioned that your general practice doctor said he or she has noticed bone deterioration above and below the rod and that one leg is shorter. What has your general practice doctor recommended as next steps? Have you told them about your rib pain?

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.

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

Thank you Johnjames for sharing your experience. Is your spine curving in the upper spine to the right? left? Or is the curve below the waist line? Or perhaps the curve has created a type of 'hump' on your upper back? Each of these types of curves has a different set of exercises.
My spine started curving when I was 15. With 6 siblings I had to wait till I started working to pay to see a doctor. I was told at age 18 that the curve was most likely from polio- but I was never diagnosed with that disease. The dr also told me there was nothing medically that could be done for me. My back pain grew worse after giving birth to my two children. It wasn't until I was 30 that I learned about scoliosis and that there might be help medically. May I ask a few questions?
Have you experienced any heart pain as of yet?
Did your dr tell you if there was any exercise that could slow the progression of the curved spine so the ribs wouldn't crush the heart?

@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

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/

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.

Thank you