Dexa scan

[knittingsue]

The waiting list is SO long.

[Southerngirl2787]

Don't get down! It's just a test, keep doing what you are doing, know you are working to a better spine. I've had 10 fractures now, giving up on DEXAs...I've had 10 MRIs and CT scans in the last 13 months, throw in a SPECT CT. At every surgery, surgeon always says, even the MRIs miss how bad the fractures really are; and he has little to say on DEXAs. Mine all happened in 13 months, back in surgery Nov 9th, two more. This is what a parathyroid tumor does to you! Destroys your spine. Keep a check on labs, PTH hormone, blood calcium, and Vit D3 levels!

[Fruitandnutcase in reply to Southerngirl2787]

Gosh I am sorry to hear that is terrible. Have you had your parathyroids treated and you take or have you ever taken osteoporosis drugs?

[Southerngirl2787 in reply to Fruitandnutcase]

Nope to standard BIS osteo drugs, on Tymlos for six months now. Bones are improving per surgeon. He put me on it. I had a parathyroidectomy back in 2017. Took about a year to get my density from severe osteo to nearly normal. Then for some unknown reason, my NP errored in my hormones, bio-identical, and reduced the estrodiol by 75%! Within a year, I was back at severe OP. Not a lot of extra body fat, no my estrogens were really low when tested. Tymlos was rough start, but now fine, surgeon wants me to stay on it until we get all the fractures fixed. He looks at MRI/CT monthly, but Endo is stuck on getting a DEXA in December. I really don't see why at this point, I'm beyond a fracture "risk"! I'm T6-L3. I will not take a BIS drug, backed by surgeon. He is so against them, as they prevent fusing and bone healing...very odd if you think about it. The parathyroid tumor did so much damage, and until they are removed, the damage keeps going. One doc just wanted to watch the high calcium...makes zero sense. I've also had four fusions, tibia nerve transplants, and both wrists/hands "rewired". At this point, it's like what else can go wrong???

[MWZ3 in reply to Southerngirl2787]

It’s hard to argue against the drugs but I keep doing it. Most doctors think they are fine and safe, but I can’t bring myself to take them.

[Southerngirl2787 in reply to MWZ3]

I was so against them, it really killed me to have to start Tymlos, but my surgeon has kept me up and going since 2014, and I know he researches, understands the drugs, and has a strong opinion on if they work or not. He has only recommended a few drugs along my path with him. He likes Tymlos since it building and does not inhibit bone development and repair. I think most doctors listen to the drug reps, and follow the "guidelines" of their practice speciality. Endo asked why I'm refusing BIS drugs, and I told her. She stared at me, not believing me at all. I said, well, I'll give you the name/phone of my neurosurgeon, talk to him. I don't think she understood the irony of you wanting me on a drug that stops healing my fusions and bones! And I don't need one that has the potential to destroy my femur bones. My legs, so far, are not involved in all this destruction.

[emersee in reply to Southerngirl2787]

Hello SouthernGirl.

May I point out that the surgeon is interested, and quite rightly, in postoperative healing and fracture healing. A surgeon is not involved in the long-term management of osteoporosis. Endocrinologists and Rheumatologists are the specialists in this area. Your endocrinologist is looking at the long-term prognosis and advising you accordingly. It would be wise to heed her advice in this area.

Drug reps meet doctors to inform them of new drug developments in certain areas. Doctors research and stay up to date with international best evidence medicine and bring that best practice to their patients. They have our best interests at heart, but let us listen to the doctors who are experts in this particular field.

[Southerngirl2787 in reply to emersee]

My neurosurgeon is the one who put me on Tymlos...he has been active on my case since 2014. He is a bone expert as well as neurosurgeon. The Endo doesn't know what a bone marker test is...I asked her. She isn't monitoring calcium either, so I am doing it myself. Rheumy is furious that Endo isn't watching calcium. Rheumy sent me to Endo as I had a parathyroid tumor previously, and wanted that watched by Endo. I've had to run my own labs on those too....Endo doesn't really seem to want to do more than talk about Prolia. I cannot take someone's advice when she refuses to learn my history and talk to me. I worked in healthcare 30+ years...taught many doctors how to run their businesses.

[MayGodBlessYou in reply to Southerngirl2787]

what's a BIS drug? thanks, you are going through much

[Southerngirl2787 in reply to MayGodBlessYou]

Bisphosphonates = BIS drugs.