Almost forgot to mention, my rheumatalotist called me last night in an attempt to clarify how/why a bone density exam and one other exam I had (can't remember name of it at the moment) can give false readings of the state of ones bones/health. I wish I had a recording of what he said, to pass along the information, because there is no way I can duplicate his response. And I'm sorry about that. But the bottom line is, the dexa scan is still not a fool proof diagnostic tool, by any stretch, as a barometer of the health of our bones. For me personally, even tho each test has shown me to have "normal" bone, "normal" levels of calcium in my urine, "normal" levels of vitamin D in my urine, I still am being diagnosed with osteoporosis of my spine, since Dr. B said my bones were soft and porous during surgery. I am immediately boosting my calcium/D intake with a supplement, and have to go on a prescription calcium booster, Fosomax. This should help strengthen my bones over time. I never would have imagined in a million years I could have osteoporosis, but believe you me, I am on it. Especially for women in my age bracket (I'm turning 55 on Sunday), remember to take your calcium and vitamin D, and still have a dexa scan, since that is, it appears, the best tool available at this time, to read our bone health, albeit far from perfect.

Cindy, I am sorry about the news. And to pick up on your point – too many folks in their 40s and 50s have osteoporosis! Isn’t the question to the right medical professional – what is the cause and diagnosis? And you are right, in that the DEXA Scan results are to be questioned, as we've discussed the inconsistent results many times. http://adrsupport.org/groupee_common...icon_frown.gif

Relating this to a recent conversation, I agree completely with Don’s and Sue’s points in this topic:

Cause of rapid spine degeneration?
http://adrsupport.org/eve/forums?m=2...c&f=7701036081

I am sorry to be cynical, but the chance of you finding a U.S. doctor that correctly identifies the root cause of your osteoporosis is statistically small (at least that’s what I have observed). Perhaps there are many reasons why this is so, but all the reasons are tragic if you ask me! Folks, if you know a stellar bone doctor that helped you, please share here or send me an email. This is a very serious and apparently widespread issue. http://adrsupport.org/groupee_common...icon_frown.gif

Ideally, you would have a diagnosis before your start you prescription (subscription is a better word) with the pharmaceutical companies. As well, taking vitamins like D may or may not help. My layman’s opinion is that if you have a chronic inflammatory disorder (which may be causing a bone growth issue) "D" may actually worsen the condition. Again, this is something I’ve observed through a cohort of patients and is just my concern. There’s more here in this recent topic:

weak bones....fusion or ADR ?
http://adrsupport.org/eve/forums/a/tpc/f/7501036081/m/6...081087672#3081087672

Perhaps you and Bill can talk offline about this issue. I encourage all of you to talk and communicate, one can learn much by emailing and talking live. That’s what this forum is all about!

Good luck in this very complicated journey. And please come back and share your learnings.

I'm sorry to hear that you were diagnosed with osteoporosis. I've got it also and that's one of the reasons that I've not been able to have surgery. Even Dr. B said that my T Score was too low.

I think you said (can't see your post while I write this) that you had to go on a calcium booster, Fosamax. It is a bisphosphonate and has side effects that you may want to read up on. The side effects especially stomach problems and jaw necrosis are unfortunately real and scary. I don't believe it keeps your calcium regulated as another newer medication, Forteo does which I was previously treated with.

I do agree with you that the DEXA scan is not the ultimate measure of bone density. There are several other factors such as bone strength, age of the patient, other medical condition, etc.,

I'm glad you were able to have surgery. I wish you well with your recovery.

Hi Spotty.....I am in a similar position to you ....ie wanting surgery but unnable due to bone density problems....may I ask what your DEXA score was exactly ? and also whether Dr B. offered you bone cement to help compensate for weak bones ? thanks.

Hi William,
My T Score was initially -3.1 spine and and improved with Forteo to -2.6. Dr. B had wanted the T score to be at least -2.5. There was no mention of using cement but even at -2.5 I would want to have this used. The main concern is that as soon as I got off the Forteo which is limited to 2 years of treatment, my bone density got worse within 6 months. So, I am concerned that even if I could get to the acceptable bone density and have surgery with the cement that I would be at a big risk for substenance if my bone density doesn't stay stable. I understand your concerns.

Spotty14 & William, I am sorry you are not able to have ADR surgery at this time, due to your T scores. I imagine it is very possible, had my T score truly reflected my bone health, Dr. B. would not have operated on me. So, for that, I am very fortunate. He did use bone cement for my 3 levels. At this time, I don't know what else to do but take the Fosomax, take extra calcium supplements w/ D, and beef up my weight bearing exercises as my body allows. If uncomfortable side effects present themselves along the way, then I will have to readjust, reconsider, and possibly take a sharp right turn. Osteoporosis is not something to mess around with, that's for sure. Good luck to both of you in your pursuit of pain management.

Cindylou,
Thank you. Some new medications are currently in clinical trials so let's hope there's new treatments on the way.