Scoliosis & Osteoporosis

[Lpowmacback]

Hi all! I am a 46 year old woman who has a not too severe case of scoliosis: a double major curve - 40 top, 35 bottom.

Although my curves are not as nearly bad as many of you here, I have had hip pain for over 15 years and it has been escalating to at first my lower back, but more recently my entire back as well as my ribs sometimes (costochondritis?).

I have another issue, however. Although I am premenopausal, I have severe osteoporosis. I have never fractured anything (knock wood!), but my hips are a -3.1 on a dexa scan.

I've been to 2 endocrinologists (one in NYC - Columbia U Hospital) who suspects I may have Celiacs Disease (although it is not confirmed - CD can be very difficult to diagnose - although 1 in 133 people have it) which is an intolerance to gluten - wheat, barley & rye, which causes the intestinal tract to not properly absorb nutrients - especially calcium in my case, perhaps. This is something I may have had since being weened.

Knowing that osteoporosis and scoliosis are thought to be somehow related, I'm wondering if anyone else here knows if they have osteoporosis without the typical reasons for having it (menopause, problems with menstruation, steroid use, etc.). I say "knows if they have osteo..." because unless one has taken a bone density test, or unless one has had fratured bones, one would not know they even had it as there are no symptoms other than fracture.


Sorry if this message is too long winded... basically just want to know if there are others out there with both scoliosis & osteoporosis (not due to the typical reasons).

Thanks!!

Lisa

[LuppieLinda]

I wish that I had answers for you! I also have both conditions, and am in a lot of pain!!!
I don't know where or who to turn to, I'm a bit dissapointed with this forum, not many answers or replys here :mad:

Have you found any help?
Hope to hear from you~~~
Linda

[JenniferG]

I've had scoliosis since age 13 and when I was 57 I had a bone density test and my results were deemed slightly better than would be expected at age 57. When I had my surgery, my surgeon told me my bones were "good". How good, I do not know. So it seems my scoliosis hasn't had a bad affect on my bones so far.

I need to keep a track of my bone density though because both my mother and grandmother had osteoporosis. My grandmother also had mild scoliosis. I take Calcium daily.

[LindaRacine]

Hi...

There's never been a definitive study showing any link between the two. There's some who contend that it's bracing in kids that causes many to suffer from low bone density. In adults, I think it's often the fact that low bone density is the cause of degenerative scoliosis.

Regards,
Linda

[jrnyc]

have had scoli since before teen years, though not diagnosed til age 31...have osteopenia now...but first bone density around age 40 showed none...i do not think my osteo & scoli are related...i am the "type" though...small, small boned, thin, etc...also i didnt eat well in my 20's on up, & didnt start taking calcium as early as i should have, so i am sure all that contributed! the gyn & G.P. always told me that osteoporosis is silent..doesnt cause pain, that is how so many can have it & not know it...everything else is causing me pain, tho...the scoli, degenerative discs, spinal stenosis & arthritis!

jess

[JenniferG]

One possible link I can think of is that scoliosis causes pain in a fair percentage of scoli patients which in turn, may make the patient more sedentary. Doing less weight bearing exercise is a contributor to osteoporosis.

[joyfull]

Hi. I have scoliosis and osteoporosis. I have a 90 degree thoracic curve with no pain. However, my osteoporosis is quite severe as well, as seen on a hip and wrist bone density scan. I recently went to an excellent doctor who did a urine test to see if I was still losing bone. The test confirmed that I was. She is treating me with a conbination of supplements and bioidentical hormones. Her name is Dr. Shahary and she is in Ridgewood, New Jersey. In three months, she is going to repeat all the tests to see if the regimen has been effective. My mom also had very severe osteoporsis, as does my sister, and neither has scoliosis. I am looking forward to finally fixing my curve this summer. All the best, Joy

[fandango]

hello, \i have kyphosis and osteopenia. I haven't yet had investigations but it seems those ladies most at risk of osteopenia/ osteoporosis are either skinny athletic types who have weight-loss dieted or inactive smokers with bad diets. I am neither of these and am thinking hyperparathyroidism or Cushings. I have started quite a rigorous weight bearing excercise regime and replaced cycling with walking to try to increase bone density/ or at least slow down loss of bone density! I believe lack of vitamin D can prevent proper uptake of calcium. And biphosphates are given to increase bone density?
apparently hyperparathyroidism is fairly common - with symptoms of exhaustion, tendency to depression, irritable, forgetfulness etc - which are pretty much symptoms of life aren't they!!! Have you been tested for this?

[Back-out]

One possible link I can think of is that scoliosis causes pain in a fair percentage of scoli patients which in turn, may make the patient more sedentary. Doing less weight bearing exercise is a contributor to osteoporosis.
That's how I figure it too.

I used to run, bike, swim and lift weights heavily. I sometimes wonder what my bone density was then (about twelve years ago). Exercise came to a stop (numerous reasons, among them pain) until last October when I restarted floor exercises. At the same time, I developed a lot of pain, lost 4" and my curve progressed from "mild-moderate" to "severe" along with developing severe lumbar kyphosis.

The floor exercizes reduce pain, but don't know anything else it's doing. My bone density it not that bad at wrists and hips (arthritis prevented checking my lumbar spine). but a recent QCT (Quantitative cat scan) shows my T- spine to be markedly osteopenic.

If only my docs had measured my height as well as my weight right along, even without X-rays, I'd have a good idea what was going on and which caused what. I take calcium and vit D3 out the wazoo now along with Fosamax. Hope that helps! It looks like at the very least, I will need a lot of extra screws for my long fusion (T4 to pelvis).

[Back-out]

joyfull
I recently went to an excellent doctor who did a urine test to see if I was still losing bone. The test confirmed that I was. She is treating me with a conbination of supplements and bioidentical hormones.

What kind of doctor is Dr. Shahary and what did she test? Parathyroid hormone? I think taking somewhat too much thyroid worsened my bone density.

Thank you!

[jrnyc]

hey Joyful
i have been on thyroid meds for about 30 years...i have been on bio-identical hormones for about 5 years, give or take...the Suzanne Somers type...estradial, progesterone, testosterone....
now my hormone doctor wants me on HGH and something else....pregnenalone or something, temporarily for 6 months...not sure about those last 2...but the others...i couldnt live too well without!

i have osteopenia...had to go off the fosomax kinds of meds due to having dental implants...dont think i'd be able to be on fosomax with surgery...something about bones not healing well .......not worried yet as my surgery will be some months away...

none of the meds i've been on have made any change in my osteopenia...not in one direction or the other!


jess

[kootenaygal]

Hi...I'm a 60 year old woman with Osteo, Scoliosis, a kyhposis, and lumbar lordosis, and I'm in constant pain. My T-12 is now collapsed, and my lumbar wedged, and I have some compression fractures in my Thoracic.My ribs, now touch my hips, I've lost 5 inches. I have been trying to manage my curvature, with massage, physio therapy, IMS ( intermuscular stimulation), acupuncture, and you name it, I've tried it. The IMS seemed to help the best, but even that hasn't kept " the wolf " away. I'm now on Morphine, slow release, and break through.
I have seen a surgeon, who has given me 2 options...do nothing, but deal with the collapse, & Pain OR have extensive surgery with rods, screws and pins. I have another consult with him in December, after he as studied my MRI, with other surgeons. I'm anxious to hear what he has to tell me.
There is no doubt, that this scares me horribly...but have been told, that once you make it through the recovery, you feel so much better. I have had afew replies from others...But would like to hear from others who have osteo, and have had surgery. Oh yes, my doctor wants me to have the urine test as well, to see how much bone I am losing. I have had 1 fracture....lost my balance, and fell against our wooden bed frame, fractured my 9th rib. Since then...everything seemed to get a whole lot worse.

Thankful for any reply...Kootenaygal

[Roxanne1979]

Hi,
Back in the late 80’s my grandmother started having spinal compression fractures, and I freaked out about it and insisted my doctor test my bone density (I was under 35 at the time, S curve, fused no instrumentation - 1976,T67, L 66). It must have been before DEXA’s were around, I had to travel three hours to a major health center and they used some kind of a bone scan machine. The result was osteoporosis. My GP sent me to an endocrinologist. Apparently, my body loses more calcium than it should for the amount I ingest. The endocrinologist experimented on me for awhile to no avail. Then on my own I tried progesterone cream with diet and exercise. Believe it or not my density increased a modest amount. My endocrinologist was ecstatic, told me to keep doing what I was doing, but did not want me to tell him what it was. Twenty six years later, and I’m just slightly better than osteoporosis. Thoracic curve is now 90. I don’t know how helpful any of this is. I too would be interested in hearing from someone with low bone density that has been fused with instrumentation. Regards,
Roxanne

[wnorm]

have had scoli since before teen years, though not diagnosed til age 31...have osteopenia now...but first bone density around age 40 showed none...i do not think my osteo & scoli are related...i am the "type" though...small, small boned, thin, etc...also i didnt eat well in my 20's on up, & didnt start taking calcium as early as i should have, so i am sure all that contributed! the gyn & G.P. always told me that osteoporosis is silent..doesnt cause pain, that is how so many can have it & not know it...everything else is causing me pain, tho...the scoli, degenerative discs, spinal stenosis & arthritis!

jess

I am a 59 year old woman who has had scoliosis probably since I was an adolescent. It was diagnosed when I was 19. When I had my first bone scan at 50, it showed osteopenia. I only entered menopause at 56. I am small, and small boned . Although I am not athletic, I walk a lot and always drank ~ 1 litre of milk a day. At 50 I started calcium and vit.D and fosamax.A few years ago I switched to actonel. Last year I started getting 2x yearly injections of Prolia, a new bone metabolizing med with excellent results. My t scores improved significantly. It's expensive, ` $400/injection. Initially my insurance didn't cover it, but now it does. I'm living in Quebec, so drug coverage is different then in the rest of Canada as well as the US.

What I've read about the scoliosis/osteoporosis or osteopenia connection is that it is possible that individuals now presenting with scoliosis may have had low bone density from birth which then contributed to a weakness in the bones and the resulting structural imbalance. If we had had a bone density taken at, for example, 15 years it may have shown that we actually had a significantly low density relative to values expected for that age group. Something to consider! I don't know if low bone density is genetically inherited, or even as a result of poor pre-natal care. Anyone have any thoughts on this?

[Spring72]

What I've read about the scoliosis/osteoporosis or osteopenia connection is that it is possible that individuals now presenting with scoliosis may have had low bone density from birth which then contributed to a weakness in the bones and the resulting structural imbalance. If we had had a bone density taken at, for example, 15 years it may have shown that we actually had a significantly low density relative to values expected for that age group. Something to consider! I don't know if low bone density is genetically inherited, or even as a result of poor pre-natal care. Anyone have any thoughts on this?

This is an interesting theory, I was diagnosed with scoliosis at age 5....at age 25 I broke my first rib, from laughing...yes laughing...over the next 12 years I would break 5 more for ridiculous reasons. At 38 pain brought me to check on my back, new diagnosis of kyphoscoliosis. I was now in need of surgery and a dexa scan was ordered. Low and behold I have osteoporosis under 40 yrs of age. I really believe this has some connection and that I have always had low bone density, it was just never checked....I wonder if there is any on going research on this theory, hmm...

[wnorm]

Dear Spring72,
Sorry to hear about your orthopedic problems. Another thing to consider is Vit.D levels. This has been in the news lately. It is very possible that those individuals with low bone density may be poor VitD absorbers or may just have very low levels of Vit. D. It would be interesting to investigate whether there are more cases of scoliosis in Canada than, for example, in the Southern U.S.

Best wishes,
Harriet

[Spring72]

Another thing to consider is Vit.D levels. This has been in the news lately. It is very possible that those individuals with low bone density may be poor VitD absorbers or may just have very low levels of Vit. D.

Oddly enough I also have low vitamin D levels and am on an 8 week prescription to get my levels up as I am having my surgery on Monday, thank you Harriet ;)

[jrnyc]

my bio identical hormone doc has me on daily Vit D dose,
as the northeast US doesn't get a lot of sun much of the year, and as a born New Yorker,
i am not used to being out in the sun all that much, unless on vacation at the beach...

i think the comparative norms for the bone density testing are set
on older women....not sure how that would work out for testing large scale
populations of 15 year olds, but would love to see it done...
of course, i'm sure insurance companies in the US would have something
to say about paying for all those bone density tests....

i used to go on crazy "diets" as a teen and woman in my 20's, 30's....
finding out i had osteopenia was not as shocking as it could have been
to my inner psyche, at least...

best of luck with the surgery and recovery....

jess

[wnorm]

Dear Spring72,
Good luck with your surgery.
I was wondering about other health issues often found in people with scoliosis. Have you heard of any link between scoliosis and colitis? It is possible that the 2 condition can occur together.Any thoughts?

Best wishes,
Harriet

[Spring72]

Thank you both....ditto on the crazy diets and I have not heard of any correlation with colitis...I'm certain there are many conditions that scoli's my have together though...just another mystery, hoping someday that someone will find the answers and put a stop this needless suffering.