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Moderator

Scoliosis - Introduce yourself and meet others

Posted by Justin McClanahan, Moderator @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?

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

lauralee | @lauralee | Jul 20, 2017
In reply to @gailfaith "@gailb, gailfaith here. I think we almost put too much faith in busy doctors, not that..." + (show)
@gailfaith

@gailb, gailfaith here. I think we almost put too much faith in busy doctors, not that that is an excuse. But I am now disabled due to a Dr.'s mistake but I don't blame him completely. Several years ago before I had one of my knees replaced, the Dr was giving me cortisone and Synvisc to hold off on the replacement as long as possible. One Friday he had injected such and I was fine for the weekend but woke up Monday morning very weak. I basically did nothing much physically except sit and read and by Friday I was back to my "normal." The next time I met with him I mentioned it and he said we'll never give you another big dose of cortisone again. Two years later I had my other knee replaced and at a post surgery follow-up, he had to aspirate the joint to remove fluid. He left that job for his resident to do, but the resident couldn't do it, so the Dr. came in and did it. Of course when I am lying down I can't see what they are doing. I was again fine for the weekend, but again on Monday morning I was very weak again and realized he had probably injected cortisone again. I figure,d since the resident started it, apparently their routine is to inject cortisone following an aspiration, so after the Dr. successfully removed the fluid, he saw the other syringe and per routine, injected it. I thought again by Friday I will be OK again, but this time the damage was permanent. So now I am fighting to stay out of wheelchair as even the Doctors at Mayo told me I can get worse but never better. So the lesson is......don't assume a doctor remembers every detail about every patient ....or even thinks you are someone else.. Several yrs ago I made an appt with another doctor in a totally different field. I had only seen him several times previously. Looking a "my" chart", he started asking me about some medications and I had no idea what he was talking about. Finally he asked my name and then he realized he had someone else's chart! So......if you have thoughts or ideas that any doctor or other professional may be thinking you are someone else, even though you both may be embarrassed ........ASK. They probably won't thank you verbally but I'm sure they will at least think about it later and be grateful for your questioning....even if they were correct in the first place. In your case, maybe he had the right person in mind, but had not updated himself with YOUR records. It doesn't cost anything to ask and it may save........who knows what!

Jump to this post

@gailfaith. I do have pain and have been in pain for much of my adult life. Sharing with others I believe my body has a low tolerance for pain. I found a few places that do ART for curved spines. I will try a few sessions to determine if I can tolerate this technique. I am not wheelchair bound and try to keep a strait posture as much as I can. Few people are aware I have a curved spine probably because I wear clothes that cover the curve.
The older I get ( 72) the less active I can be do to the pain. There are many things I want to do and want to accomplish. I keep pushing ahead and know I can do all things through Christ who strengthens me.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 20, 2017
In reply to @lauralee "@johnbishop. Do you have scoliosis!" + (show)
@lauralee

@johnbishop. Do you have scoliosis!

Jump to this post

Hello @lauralee, I don't have scoliosis but do have some pretty poor posture issues from years of sitting at a computer and not focusing on good posture. I do have some degenerative spine issues in the lower back and "thin bones" as my doc called it - osteopenia.

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lauralee | @lauralee | Jul 20, 2017
In reply to @lauralee "@johnbishop. Do you have scoliosis!" + (show)
@lauralee

@johnbishop. Do you have scoliosis!

Jump to this post

@johnbishop. I'm sorry to hear about your back issues. What have doctors prescribed or told you what to do that will help?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jul 20, 2017
In reply to @lauralee "@johnbishop. Do you have scoliosis!" + (show)
@lauralee

@johnbishop. Do you have scoliosis!

Jump to this post

I really haven't had that chat with my primary care yet. She suggested I add more calcium - 1200 mg a day to my regimen but I'm trying to get it through food intake and not the pills which tend to cause constipation ☺ She was more concerned about falling down and breaking a hip, etc. due to the thin bones. To be honest the lower back pain is more of an ache and just keeps me from doing to much manual labor. So I just move a little slower and take it easy when I'm doing outdoor tasks. The last thing I want is back surgery due to all the horror stories I've heard.

REPLY
gailfaith | @gailfaith | Jul 20, 2017
In reply to @gailfaith "@gailb, gailfaith here. I think we almost put too much faith in busy doctors, not that..." + (show)
@gailfaith

@gailb, gailfaith here. I think we almost put too much faith in busy doctors, not that that is an excuse. But I am now disabled due to a Dr.'s mistake but I don't blame him completely. Several years ago before I had one of my knees replaced, the Dr was giving me cortisone and Synvisc to hold off on the replacement as long as possible. One Friday he had injected such and I was fine for the weekend but woke up Monday morning very weak. I basically did nothing much physically except sit and read and by Friday I was back to my "normal." The next time I met with him I mentioned it and he said we'll never give you another big dose of cortisone again. Two years later I had my other knee replaced and at a post surgery follow-up, he had to aspirate the joint to remove fluid. He left that job for his resident to do, but the resident couldn't do it, so the Dr. came in and did it. Of course when I am lying down I can't see what they are doing. I was again fine for the weekend, but again on Monday morning I was very weak again and realized he had probably injected cortisone again. I figure,d since the resident started it, apparently their routine is to inject cortisone following an aspiration, so after the Dr. successfully removed the fluid, he saw the other syringe and per routine, injected it. I thought again by Friday I will be OK again, but this time the damage was permanent. So now I am fighting to stay out of wheelchair as even the Doctors at Mayo told me I can get worse but never better. So the lesson is......don't assume a doctor remembers every detail about every patient ....or even thinks you are someone else.. Several yrs ago I made an appt with another doctor in a totally different field. I had only seen him several times previously. Looking a "my" chart", he started asking me about some medications and I had no idea what he was talking about. Finally he asked my name and then he realized he had someone else's chart! So......if you have thoughts or ideas that any doctor or other professional may be thinking you are someone else, even though you both may be embarrassed ........ASK. They probably won't thank you verbally but I'm sure they will at least think about it later and be grateful for your questioning....even if they were correct in the first place. In your case, maybe he had the right person in mind, but had not updated himself with YOUR records. It doesn't cost anything to ask and it may save........who knows what!

Jump to this post

@lauralee Thanks, now I know you are addressing me! Amen to you last sentence! When I was in high school and college, each month I had a lot of pain and in college I had a standing order for demerol i.m. for pain. So I can't help but wonder if that help me get a high tolerance for pain. However in 1976, I was going to a chiropractor who was good for me, but one day as I got out of my car felt something move in my back, so I sent to see him. He didn't re-diagnose me and used the same treatment and I ended up with severe sciatica and was out of work for over 3 months as I was in constant pain and couldn't[ sit down. I had a Myelogram and he said regardless of those results, he'd go ahead with the spinal surgery anyway, but after the myelogram, before they even took me back to my room in the hospital, he asked if I had seen my orthopod but I hadn't since this was the bicentennial weekend and no doctors were around. THe surgeon said that he was back now and sent him up to my room. The orthopod told me to stand up but I had been told not to raise my head off the pillow and he said," I HAVE to see you stand." so I did. His exact words were, "I think you can hack it this time without surgery" and he was very RIGHT. Yes I was out of work for 3 months, but after that I went back to technical rock climbing, etc. with no problems. But now 40 years later I am getting scoliosis, ( and I am not sure if my Sleep Number bed is responsible for that) .and I am glad I never had that surgery. But now I have no pain, unless I move in a weird way, and I can't describe how I move to cause that as it happens so quickly, I don't have time to analyze it! But I probably made you "jealous" talking about my lack of pain and I apologize for that! But I will pray for you. Handy how prayer can "work" long distance! I am toying around with the idea of getting a Craftmatic bed as I am not sure if the Sleep Number bed is good for me. But both beds are in the 2-3 + thousand dollar range and my SN bed is only about 3-5 years old. gailfaith

REPLY
bernese53 | @bernese53 | Jul 20, 2017
In reply to @lauralee "@bernese53. Do you have scoliosis?" + (show)
@lauralee

@bernese53. Do you have scoliosis?

Jump to this post

Yes as well as degenerative arthritis and two severely herniated disks. Oh, spinal stenosis too! Saw an orthopedist at Mayo last year who told me I would need surgery sooner rather than later. I am in the second year of a master's degree program in theology; I started the program at age 63 and I am trying to finish before surgery.

REPLY
lauralee | @lauralee | Jul 20, 2017
In reply to @gailfaith "@gailb, gailfaith here. I think we almost put too much faith in busy doctors, not that..." + (show)
@gailfaith

@gailb, gailfaith here. I think we almost put too much faith in busy doctors, not that that is an excuse. But I am now disabled due to a Dr.'s mistake but I don't blame him completely. Several years ago before I had one of my knees replaced, the Dr was giving me cortisone and Synvisc to hold off on the replacement as long as possible. One Friday he had injected such and I was fine for the weekend but woke up Monday morning very weak. I basically did nothing much physically except sit and read and by Friday I was back to my "normal." The next time I met with him I mentioned it and he said we'll never give you another big dose of cortisone again. Two years later I had my other knee replaced and at a post surgery follow-up, he had to aspirate the joint to remove fluid. He left that job for his resident to do, but the resident couldn't do it, so the Dr. came in and did it. Of course when I am lying down I can't see what they are doing. I was again fine for the weekend, but again on Monday morning I was very weak again and realized he had probably injected cortisone again. I figure,d since the resident started it, apparently their routine is to inject cortisone following an aspiration, so after the Dr. successfully removed the fluid, he saw the other syringe and per routine, injected it. I thought again by Friday I will be OK again, but this time the damage was permanent. So now I am fighting to stay out of wheelchair as even the Doctors at Mayo told me I can get worse but never better. So the lesson is......don't assume a doctor remembers every detail about every patient ....or even thinks you are someone else.. Several yrs ago I made an appt with another doctor in a totally different field. I had only seen him several times previously. Looking a "my" chart", he started asking me about some medications and I had no idea what he was talking about. Finally he asked my name and then he realized he had someone else's chart! So......if you have thoughts or ideas that any doctor or other professional may be thinking you are someone else, even though you both may be embarrassed ........ASK. They probably won't thank you verbally but I'm sure they will at least think about it later and be grateful for your questioning....even if they were correct in the first place. In your case, maybe he had the right person in mind, but had not updated himself with YOUR records. It doesn't cost anything to ask and it may save........who knows what!

Jump to this post

@gailfaith. I'm not at all jealous, rather I'm happy for your lack of pain. I'm happy for those who don't have scoliosis too.
Thank you for sharing some of your experiences: I learn from others.
Blessings to you and all who are connected to Mayo Connect.

REPLY
lauralee | @lauralee | Jul 21, 2017
In reply to @lauralee "@bernese53. Do you have scoliosis?" + (show)
@lauralee

@bernese53. Do you have scoliosis?

Jump to this post

@bernese53
I encourage you to try finishing your Masters degree in theology before looking

at surgery. It is a thrill to accomplish a feat like that. I received my Doctorate in Practical Ministry 15 years ago. I wanted to attain this high level degree for myself and not for others. I'm delighted I did and you will be as well. Are you interested in teaching this subject?

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