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Default Jan 19, 2020 at 05:57 PM
  #1
I am stressing hard tonight. When I was a kid I was diagnosed with Scoliosis. It was pretty bad at the time. An "S" curve with about 55 degrees each. After having to wear a full body brace for 10 years, my curves went down to 36 and 25. I was pronounced as cured.

Later I found out that the belief they had at the time that the curves would not move in adulthood was wrong. Many people did have movement.

I got them retested at 30 and was told they were stable. I kind of didn't believe it but I took it. It was a time I was having a lot of pain. And mostly since that time I haven't had any pain. I suspect the pain I was having was unrelated and in part caused by being over weight.

But now, at 50, and as menopause has happened, I am having pain again. I recently had a chest x-ray for congestion and my doctor kind of suggested I should really get it checked again. But it could be caused by menopause as it isn't back pain proper but more like side pain. (that could be breast tissue sensitivity) and or being overweight again.

I am frustrated and annoyed to find there are still almost no treatments except for a massive surgery. It is a terrifying surgery. They literally cut you down your back, straighten you out, put some rods on your back, fuse your back, and then sew you up. You are in the hospital generally 6 days (that is a lot) and then, go home. When you go home you are in dire straights. Mostly on narcotics for about a week and can hardly move. I would definitely need someone with me for weeks.

This is not a surgery that you should have as an adult but, if you don't have it your lung capacity could be shrunk and it could become life threatening.

So you should probably have the surgery before getting older (even if you aren't sick at the moment). It also gets worse with osteopenia.

It does not help that I literally have no one I could count on to help me. It is just me.

So anyway. I decided I need to start taking this seriously and I asked my doctor to set up an evaluation of the scoliosis. When I last stressed over this I didn't have a good job with benefits. I now have good insurance, and I have the ability to take off 12 weeks or so from my job to recover (though they might not pay for me) I possibly could have insurance pay for a home health aid. That is good news.

My home is not the best for this. My first floor does not have a bedroom. I would need to walk up and down stairs for that and I am not sure that is optimal.

I have a bone density test scheduled for February. If that doesn't show anything I will be happy.

I probably will have to have it evaluated though more frequently than 20 years as osteopenia is known to cause slippage in the curve. Also it is suspected that loss of Estrogen and Progesterone can cause it to move.
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Default Jan 19, 2020 at 06:49 PM
  #2
Do you have a bathroom on the first floor? You might could rent a hospital bed for the first floor.

Honestly, if it were me, i would try to lose weight and exercise exercise exercise. I was seeing a chiropractor a couple of years ago, and he "fixed" it so i could barely walk - my knees somehow got out of alignment. I stopped seeing him and i went back into my comfortable, functioning misalignment!
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Default Jan 19, 2020 at 07:08 PM
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I do but it doesn't have a shower. Just a power room. Losing weight will definitely help but that is the ONE thing that has alluded me my entire life and it getting much more difficult to achieve in menopause. Still the hospital bed thing might work. The good news is that if I decide to do it I could really prepare slowly and properly.
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Default Jan 19, 2020 at 07:11 PM
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I hope you are able to work something out. The surgery sounds like it would be scary but worth it.
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Default Jan 23, 2020 at 06:11 AM
  #5
Ugh I asked my primary care doctor for a referral and she is JUST clueless. She referred me to the health network's "spine and pain center" when I looked it up... there isn't even a doctor involved... never mind a scoliosis doctor. Just "pain" people. And frankly, all I want is someone to take an x-ray and tell me the degree of curve. I don't really care too much about pain.

A bit of good news... one reason I was really worried was that... at one point in my life I was 5'4.5 to 5'5 when I got measured. But recently someone said I was 5.35 -- that freaked me out. To lose an entire inch? Now... I know sometimes when I knew I was getting measured I would try to stand a bit straighter but I feel like that is too much to account for that. It just seemed like evidence my back was slipping.

So I looked it up and turns out according to my records I started showing up at 5'4 to 5'35 around 2016 and 2017. And I have been pain free since that time. So that sort of says any pain maybe unrelated.

But I found out that after the age of 40 it is expected that women will lose height. This doesn't mean you have osteoporosis, it is just a drying out of the discs in your back and compression due to that. I had no idea. I didn't think you lose height until you were having bone problems. In fact, depressingly, women can lose from 2 to 3 inches by age 80.

I do have a bone density test upcoming. Likely that will happen before I get in for a back x-ray.

I have decided this issue is beyond the scope of my primary care. There is a massive hospital near me, considered one of the best in the nation and I am going to make an appointment here. They have a scoliosis section. The only drawback with a big hospital and big doctors is they almost always want to operate asap and put pressure on you. But I will just have to fight that off.
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Default Jan 23, 2020 at 07:32 PM
  #6
Quote:
Originally Posted by Emily Fox Seaton View Post
I am stressing hard tonight. When I was a kid I was diagnosed with Scoliosis. It was pretty bad at the time. An "S" curve with about 55 degrees each. After having to wear a full body brace for 10 years, my curves went down to 36 and 25. I was pronounced as cured.

Later I found out that the belief they had at the time that the curves would not move in adulthood was wrong. Many people did have movement.

I got them retested at 30 and was told they were stable. I kind of didn't believe it but I took it. It was a time I was having a lot of pain. And mostly since that time I haven't had any pain. I suspect the pain I was having was unrelated and in part caused by being over weight.

But now, at 50, and as menopause has happened, I am having pain again. I recently had a chest x-ray for congestion and my doctor kind of suggested I should really get it checked again. But it could be caused by menopause as it isn't back pain proper but more like side pain. (that could be breast tissue sensitivity) and or being overweight again.

I am frustrated and annoyed to find there are still almost no treatments except for a massive surgery. It is a terrifying surgery. They literally cut you down your back, straighten you out, put some rods on your back, fuse your back, and then sew you up. You are in the hospital generally 6 days (that is a lot) and then, go home. When you go home you are in dire straights. Mostly on narcotics for about a week and can hardly move. I would definitely need someone with me for weeks.

This is not a surgery that you should have as an adult but, if you don't have it your lung capacity could be shrunk and it could become life threatening.

So you should probably have the surgery before getting older (even if you aren't sick at the moment). It also gets worse with osteopenia.

It does not help that I literally have no one I could count on to help me. It is just me.

So anyway. I decided I need to start taking this seriously and I asked my doctor to set up an evaluation of the scoliosis. When I last stressed over this I didn't have a good job with benefits. I now have good insurance, and I have the ability to take off 12 weeks or so from my job to recover (though they might not pay for me) I possibly could have insurance pay for a home health aid. That is good news.

My home is not the best for this. My first floor does not have a bedroom. I would need to walk up and down stairs for that and I am not sure that is optimal.

I have a bone density test scheduled for February. If that doesn't show anything I will be happy.

I probably will have to have it evaluated though more frequently than 20 years as osteopenia is known to cause slippage in the curve. Also it is suspected that loss of Estrogen and Progesterone can cause it to move.
I was misdiagnosed at fourteen of having scoliosis and found out in my late twenty I never had it but my mom believe that I did because of all the back problem I have.
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Default Jan 23, 2020 at 08:07 PM
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Originally Posted by Buffy01 View Post
I was misdiagnosed at fourteen of having scoliosis and found out in my late twenty I never had it but my mom believe that I did because of all the back problem I have.
The insane irony is that I have pretty bad Scoliosis 36 curve in the thoracic and 25 in lumbar and I have never had ANY back pain. I mean I actually have a noticeable hump back there and I have never had any serious back pain. Until now and it isn't serious.

But my sister, who doesn't have it, is on disability for that.
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Default Feb 19, 2020 at 06:14 AM
  #8
So good news. Yesterday I had a Dexa Scan. This is a full body X-ray. I wasn't expecting to see the X-ray but the moment I got off the table I saw it. I could see my curves. No doubt in my mind they haven't progressed significantly. My lumbar looks like it has hardly any curve. This is good because lumbar is the most complicated. Thorasic doesn't look bad either... but weirdly.. my cervical seems the worst. Now we never paid attention to that when I was a kid. I was told that the cervical was the least problematic because it was most easily fixable and it didn't cause issues with organs. Thorasic can cause trouble breathing if it progresses enough and both Thorasic and lumbar can cause bad pain.

Also good, if I did choose to get surgery I think I could be a candidate for the minimally invasive surgery. As that is considered ok for people with upper body curves as opposed to lumbar.

I think I will have it officially checked out in about a year (try to avoid the X-ray overload) but I am pretty confident it hasn't moved much.

Also, the Dexa scan measures your bone mass and mine is in relatively good shape. Everything is "normal". This is great because I hardly do anything for my bones and I have a good measurement now.

The only frustrating part is that my back still hurts. Not sure why. But since I am pretty sure now that my bones and curves are not progressing... I feel like it is time to look to metabolic issues. The pain is in the upper lumbar / lower thoracic so I am pretty sure it is not related to the scoliosis.

It measured my fat mass. Yikes.. but at least now I know.

Finally the guy was nice enough to measure my height. This kicked everything off as I noticed that my height had dropped from 5'4.25 to 5'3.5. On my records this happened 2 years ago. Though I can't be sure when because my doctor told me they way they do records (and this annoys me) is that they use the last measurement to compute BMI and only do actual measurements for a physical or some other type of new exam (new doctor). So it is possible this happened way before the two year ago measurement. But this guy put me at 5'3.75. I think 1/2 inch loss is reasonable.

This was absolutely worth it. I had been trying to get a regular bone scan at my medical institution but first they cancelled on me and then they didn't have another appointment until April. This place I got the Dexa scan had an immediate appointment and I got a TON of info about my health. I did have to pay out of pocket but who knows what the insurance would have paid for on the regular bone scan.
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