Looking for info

Posted by amyinnc @amyinnc, Jul 10 2:53pm

I am 51, have been diagnosed with severe osteoporosis and have been on Tymlos for a month now. After reading some discussions I'm realizing I haven't been taking this as seriously as I should. My primary diagnosed me; should I have a different doctor to handle this? I have terrible back pain but a doctor at the pain clinic said osteoporosis doesn't cause pain, thoughts? My dexa scan was -3.7, how often is normal to recheck? I'm afraid to exercise for fear I'll fracture something, suggestions? Any help/feedback would be greatly appreciated.

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I am a 68 year old women and I feel all women of my age have osteoporosis, of course including me. But with you have further symptoms as back pain, and some test results. I feel it would be a good idea to see at least one other doctor to see what their results would be?
I am an old gal and I have had brain cancer - at first I thought laser surgery would take care of it. It did originally
but in did return in a few years. So I went to another oncologist and we and my family talked it over with him, to see if he thought he might be able to take me on? He went over different treatments, and said due to my age he felt chemotherapy was my best bet. I was impressed with him, we did the chemotherapy, and I have been clear for five years now.

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@gently

@amyinnie,
you are on the best medication for your condition. Cheers to you PCP. It is so easy to get started on the wrong one.
You may already have a fracture and need an MRI to rule fracture out. And to discover the cause of your low back pain. Neither dexa nor x-ray are sufficient. You might ask the PCP for an MRI with and without contrast.
You'd want an endocrinologist to understand if you have a secondary cause for osteoporosis. Both you and @newenglandtransplant are a bit young to have osteoporosis. A secondary cause might indicate the need for additional treatment or a change in medication. Endocrinologists are the best informed test for secondary cause.
best wishes

Osteoporosis has been called the "silent" disease because you have it without symptoms until you fracture. To say osteoporosis isn't painful is a disconect between cause and effect that you can apply to any disease.

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@gently why is an xray insufficient? Did your doctor say only MRI's are able to pick up some fractures? My PCP (GP in Canada) ordered an xray to look for fracture, not an MRI. I will go back to her and ask for an MRI but she is not always easy to convince to test anything.

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@dianeelizabeth

@gently why is an xray insufficient? Did your doctor say only MRI's are able to pick up some fractures? My PCP (GP in Canada) ordered an xray to look for fracture, not an MRI. I will go back to her and ask for an MRI but she is not always easy to convince to test anything.

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@dianeelizabeth I think x-rays are pretty effective at finding fractures. But not in the first 24-48 hours after a fracture. So I wait after I feel a fracture or unusual pain.

MRI's are good with soft tissue injuries and distinguishing from bone injury. in my experience.

@gently curious why you suggested MRI-?

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Often fractures, expecially vertebral compression fractures, are too subtle to see on X-Ray.
MRI uses magnets to send a radiowave through the body. Protons react to the radiowave energy and create an image that details inflammation, and nerve compression and importantly the slight fractures x-ray can't delineate. These have especial importance in in osteoporosis where the fractures begin in lacy trabecular bone. When there is enough bone involved that the vertebra collapses, the x-ray can pick it up.
X- ray has more difficulty passing through dense structure such as bone. The image is produced by variations in the light that passes through. It's very useful especially for impact injuries but can miss fine fractures all together. 'Many specialists (here) require an MRI before they will schedule a patient.
wishing you luck
It is a sensible firest image because it is easier, faster and less expensive.
Your provider may be unwilling to order an MRI and may prefer to "guess" the source of your pain. There are medical doctors here too practicing the "economic feasibility." I have the impression that it is easier in the US to change doctors when the care is insufficient.
Some fractures are so slight that a CT is required to detect them.
If your physician cannot determine the cause of your pain, especially if she says she doesn't know, it sometimes helps to ask for a referral to someone who might know--a specialist.

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Go for an MRI. I had two fractures that were shown on an X-ray but an MRI gave my doctor more detailed info re to a possible Kyphoplasty surgery.

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Again, I have 7 spinal fractures and have only had x-rays. If I wanted to see if there was a hairline fracture (as opposed to compression) I might have a CT. For soft tissue evaluation, MRI. I did not consider kyphoplasty though.

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One advantage of MRI is the soft tissue information that can yield the cause of pain. It helps to know if you have disc degeneration, or compression fracturing or both.
A local priest fell from his bicycle and had a hairline fracture that didn't appear on the X-ray. It was a fight but he was able to get an MRI which also missed the fracture. As the fight for a CT dragged on he began taking Norco 10/325 and multiple doses of Tylenol. After his kidneys failed, autopsy revealed the hairline fracture had advanced or widened and was clearly evident.
Apropos of nothing, my friend fell off fan 18ft ladder and rushed to the ER where they x-rayed his hip. To our great relief he had no fracture, though lots of pain. Another visit to the emergency and the entire pelvis was MRId. His entire sacrum had cracked down the promentory and snapped back into place. The pubic ramus was shattered.

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I fractured my L3 in January from severe coughing that lasted over three weeks. Tip: Don't cough extensively lying in bed and certainty not twisted over the side of the bed (I was coughing up copious amounts of phlegm). This position in bed alone is enough to damage your spine. After one week of severe coughing I had woke up one morning with a painful twitch on the left side of my lower spine, above the left buttock. It got continually worse and two days later a CT scan in the ER didn't pick up anything (ER doc thought it was a kidney stone - it wasn't). Coughing continued and pain kept getting worse.

A few days later, I went to spine doc who took an XRAY which showed nothing. Pain kept increasing and now included severe pain over left outer thigh and continued to a point that a pain doc prescribed opioids (took pain down to an 8 from a 10+ so I stopped because it wasn't worth the risks. Believe me, if the opioids worked, I would have been popping them in like Tictacs. By now I had become completely bedridden. I could no longer stand for more than one minute at a time due to the severe pain. Lying down made the pain subside to a tolerable level.

So I now I'm off to another top spine doc. My husband carried me into his office because I could no longer stand or sit due to the excruciating pain. This spine doc gave me 2 emergency epidurals. All he had to go by was the CT scan from the ER which he says he believed the vertebrae looked slightly compressed (the ER radiologist didn't notice anything). Five days later, I had an MRI which confirmed not only a compressed vertebrae but a vertical fracture through L3 as well. Next visit, the spine doc looked at the MRI results and said this was the cause of my extreme pain which, interesting enough, was never felt near my spine. The severe pain that lasted for weeks was a stabbing pain above the left buttock and also on the outer left thigh. Anyway, the two epidurals kicked in after 4 days and I started to be able to stand more. Interestingly, spine doc was adamant about no bracing - basically said to take it easy and start PT when I was ready. So no real direction about what to do other than it takes 3 months to heal and that I had no limitations (what??!!) But my pain doc and a friend who's a radiologist told me the no bending, no twisting, etc. rules so that's what I did.

Here's the interesting part. A few months later, I went to my physiatrist (a rehabilitation MD) to get clearance to start PT. This doc is known to be a brilliant diagnostician and still teaches at Columbia University medical school. He looks at my MRI and gets upset when I told him about the two emergency epidurals. He said based on where the pain was, the intensity of the pain and my MRI, he was positive that it didn't come from my fractured vertebrae (he did acknowledge that vertebrae fractures can certainly cause excruciating pain but the location of my pain and MRI report brought him to this conclusion). He said that the MRI showed multiple bulging discs in the lumbar spine as well as the fracture (thanks to the extreme coughing) and that it was those discs that were impinging on the exiting nerves that caused my extreme pain and not the fracture. He wanted to speak with the spine doc because he felt the pain was totally misdiagnosed but I told him to let it go because I had been in such bad shape when the (2nd) spine doc first saw me. The spine doc had only a CT scan to go by so I don't question the epidurals.

Bottom line: Xray had shown nothing so it's safe to say that the fracture didn't happen yet. CT scan showed faint outline of vertebra which looked compressed. MRI clearly shows the damage to the vertebra (vertical fracture as well as a compression fracture as well as multiple bulging discs).

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If anyone suspects a fracture and is going to first try an x-ray, do not have it in the first day(s) after the fracture. At least 48 hours. If the x-ray doesn't catch anything, it seems very reasonable to do CT scan or MRI. MRI is good for soft tissue. All 7 of my spinal fractures have been caught on x/ray as well as scoliosis, disc issues and other degenerative changes. For some of us, insurance requires an x-ray first since it is cheaper.

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