Scoliosis - Introduce yourself and meet others

Good morning all, I was kicked in the lower back by my sister when I was aged around 10, I still remember the months of pain at the time. Then the on going problems. AS a teenager I put it down to having 'nurses back' in those days no lifting gear available.
The first mention was when I was around 40 and an Xray mentioned mild scoliosis, and then when 55 an Xray reported twisting scoliosis.
Ive never had special treatment for it, apart from physio to keep me going from acute episodes.
Now Im about to hit 70, and finding that its getting more restrictive,
hoping to get to know you all and learn the tricks to keeping on keeping on!
MuffinCat

Hi, my Connect name is @gailfaith and I apparently have had slight scoliosis for years, (no discomfort). I have a chronic "bad back" since 1963 when I drove 14000 miles in 4 months working with blind kids and smooth collies throughout the eastern US - and slept 4 mites in a bed - otherwise on the front seat of my car or someone's couch, In the beginnings ('63) I slept on the floor (anything hard) and that seemed to help. Now I am 81 and with myotonic dystrophy "precipitated" by a doctors mistake that was Dx at Mayo in 2013. SInce my Mayo adventure, I have been in weekly PT, hoping to stay out of a wheelchair. Currently I have a walking project and since Aug 23, 2016, I have now walked 75 (actually measured) miles with 2 canes with my therapist's blessing.. During the years I have tried hard and softer mattresses, but within the last 4 or 5 years, I purchased a Sleep Number Bed (so I can go from hard to soft at no additional cost !!!). However, the sales people at the store told me if I sleep on my back or side, to keep it on the soft side. It seems a setting at 35 is/was OK. But recently, my spine has decided to move to the right and my scoliosis can be seen by my right hip protruding. I can't help but wonder if my Sleep Number Bed set between 35 and 45 or thereabouts had been responsible for the progressed scoliosis, Has anyone else had any experience with SN beds and the degeneration of scoliosis? However, one benefit of my SN bed is that I can now stretch my back with the setting at 100 and I no longer have to get on the floor to do so from which it is difficult for me to get back up!

Hi mollyb. Not leaving the subject of scoliosis, but I did noticed you have a high Ca level due to your parathyroid. Have you considered surgery for your parathyroid? I went to Mayo in MN in June of this year and had successful surgery done there. Now we are just monitoring my Ca levels, trusting it stays in the desired range. Has anyone suggested Ca for scoliosis? @gailfaith

No one has suggested surgery as I am 69 on 5/5. I have been told not to take Ca due to my levels always being high. I quit going to the endocrinologist due to the long drive. I am curious to know if the high Ca levels and hyperparathyroidism has anything to do with the cirrhosis of the liver. If you have any suggestions, please let me know @MollyB.

Hi mollyb, I was 80 this past April when I had the surgery to reduce the Ca levels that have been high for years. Now that I am in a retirement community the Dr. here brought up he subject, but also recommended that I my age not to do anything about it! After looking at recommendations on the internet, i decided to ignore him. Recommendations that I found were to find a surgeon that does at least 3 parathyroidectomies a week, does them in 15 minutes, all successfully. I went straight to Mayo where after many tests the surgeon assigned to me did the surgery. I asked her how many she had done and she said over 45000 and that is all she does and operates 3 days a week. She did the surgery on a Tuesday afternoon and I was on the plane heading home the next morning. I had asked a neighbor who was a general surgeon, what was the surgical risk on that surgery and he said you can loose your voice. I had two of the 4 parathyroids that were enlarged, but she removed one, did blood tests during surgery and since that brought the CA levels right away (!) to within normal range, left well enuf alone with the other one. Last blood work recently, the Ca was within normal levels. However I still have to limit my Ca supplements to 600 mg/day but I do eat a lot of low fat cheese for the protein for my myotonic dystrophy also Dx at Mayo in 2013 and osteoporosis (despite the high levels of Ca previously!!!)t. Not that Mayo is easy for me to get to, it is 3 separate flights, but I think I would in go back in a heartbeat if needs be. My local endocrinologist orders the blood tests and he, my GP, and the Mayo surgeon gets the reports. Have you had any kidney stones as a result of your high levels? I did not before the surgery, but one right after the surgery because the body was trying to get rid of the previously high Ca that was also removed under anesthesia because of its size. I thought I was having a VERY, VERY mild attack of diverticulosis that I haven't had for years. However, after a week, I went to the ER where they said it was a kidney stone. No problems since.

Thank you for the information gailfaith. I have been wanting someone to talk with about this. I had an endocrinologist that wanted me to go on calcium medication Sensipar but I could not afford $300.00 a month for the meds. So she told me I was non-compliant. I also have type II diabetes, cirrhosis of the liver and heart blockages. My question is are they all inter-related somehow. I quit going to the endocrinologist as she was very rude. It is not that I don't want to take medication but if you can't pay for it, I think they should understand. I am 69 in just a few days. No one else has mentioned having surgery. My family doctor says he will wait until I start having kidney stones (which I have not had). PTH is up and down and is normal right now. I so appreciate talking with you about this as the doctor just ignores it. I live in West Virginia and don't know if we have a qualified surgery here. Please keep in touch and let me know how you are doing. Do you feel any different after the surgery.
Thanks again, MollyB

Have been looking for information on this topic as I have scoliosis with chronic pain! Thank you. I live in Boston and would like to know if there is medical help for me here.

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I would rather not be a part of the discussion because while it is one of my diagnoses, I have no symptoms. I don't feel I would have anything valuable to this particular discussion. Thanks for the consideration.

Hello @123zale,

I just posted a moderator's note about Zero Pain Now. Thank you for asking us to look into this resource.

We were unable to find an affiliation between Zero Pain Now and Mayo Clinic. This is not intended to discourage your inquiry or personal success with seeking alternative therapies. We appreciate your bringing it to our attention and asking the question about whether or not there was any research being done in conjunction with Mayo Clinic. I look forward to your continued participation on Connect, and specifically in the Scoliosis discussion.