As you all know, one of the ways I cope with the pn, and the back, is to learn as much as I can. Well, at some point I think I've learned enough, and I can go forward, and put myself in the doctor's hands. I become the "educated patient" par excellence. And it's still f**ing not enough. Bcause if I'd just looked harder, I would have learned that for several years now it's been clear that I was on a medication which would have prevented healing. And it still might, going forward.

Here's what I've learned since last night. Fosamax is really really awful. Our bones are made up of these two different cells, osteoblasts (builders) and osteoclasts (destroyers) The builders lay down minerals and the destroyers take it away. Bone is this living, breathing, evolving ecosystem that's in perfect harmony until we get older. Then the builders get more tired and can't keep up with the destroyers.

When doctors look at pictures of post-menopausal women, they often see thin bones. If you get a bone density done, they see the thinner bones more clearly. So, they recommend the lady takes Fosamax, and the next year, lo and behold, her bones are thicker and denser again on the films. Everyone is happy.

But after a year or so, she peaks out, and things don't get better. They don't get worse, but they don't get better.

At that point what has happened (and I definitely don't have the details right since I'm just trying to get the overall picture that's relevant, not necessarily biologically accurate) is that a generation of the osteo clan has died off. It's as if the osteoblasts were living in such a dense castle that there wasn't room for babies, and, besides, there were no osteclasts to do their business with and make more baby blasts and clasts.
The number of living breathing worker cells is nil.

The ecosystem is dead. The bone is dense, but it is DEAD. Like a sick woman with a facelift, an onlooker (think doctor) sees something gorgeous---FABULOUS Xrays and density scans-- but inside things are past sick, they're dead.

Into this ecosystem introduce a challenge. Say, the woman needs a tooth pulled. That leaves a hole in her jawbone, which the dentist expects will fill in with bone. Only it doesn't. It gets infected and he scrapes it out a bit more, cleans it up, and comes back adn the hole is BIGGER, not smaller. He tries to scrape and clean it up, and bone just dissolves under his instruments. Her jaw begins to turn to sawdust and basicall falls off. This is called Osteonecrosis of the Jaw. It's a happening thing. Each touch to the bone worsens the situation.

http://courses.washington.edu/bonephys/opjawON.html



Studies will show that women on Fosamax get fewer hip fractures. But other things happen. Other bones break, spontaneously. Legs break, ankles, or, THINK SILVERLADY BILLYE HERE--your foot breaks, then your leg then a vertebrae then your sacrum. And if the doctors want to put in hardware to hold things together, there's really nothing to hold the hardware in place. It all falls apart.

This link shows what has happened to Billye. It's a fulltext article, but skimmable.

http://jcem.endojournals.org/cgi/con.../3/1294?ck=nck

Now onto ME.

I've had years of traetment with Fosamax. In 1999 I was first given it for osteopenia (not even osteoporosis). My rheumi thought I was high risk given I'd been on steroids and have the bodytype for osteoporsos. My bone density improved and I was taken off. At some point I was put back on. I have no idea anymore how much I've been on it or off it, but I do know that I filled a prescription for it in Jan, 2006, prior to my Feb surgery. And I do know that it was continued through December, 2006, when I was told the surgery had failed.

Because that was when I first went to pubmed and put in every drug I'd been on and combined it with fusion to see if any influenced fusion.

There were four animal studies saying it hinderred fusion. No adult reports.
One study clearly showed it hindered fusion but the authors concluded that there was no reason to stop it for spinal fusion. (I assume there was a Merck grant much has happened. I was going to give this 6 - 9 months. The pain is worse and I'd move it up to 6 months, if there was a really good alternative offered by surgery.

But now I'm thinking this: I don't have bones inside me anymore. I have dead brick. Nothing will heal this; there are no living cells to heal me. If I get a larger surgery done, the same thing can happen.

If my worst fear is true, I will be Billye and have her life. Which has more suffering than I can imagine I can endure. She's got a shining light inside that allows her grace under pressure and pain. I really don't want to suffer like her. I can't carry it as well.

I see nothing on line that offers a solution to this problem.

The surgeon did give me one good piece of advice, which I didn't appreciate HOW GOOD on Friday. He asked me to write down the name of bone metabolism specialist and see him before surgery. I told him I didnt' need a bone guy because I dont have osteoporosis and dont' want osteoporosis drugs. But I think he understood. He said nobody really knew how bad Fosmax was until this year (getting his buddies off the hook), and I should see this guy.

I will call and see him ASAP. But omigod am I scared. I feel like not only was I hit over the head with a mallet on Friday, but that after the shock wore off, I discovered that I'd been being hit by mallets daily for years now and just didn't know it. The psychic numbness is leaving, but it's being replaced with terror.

So, yes, it's time to do more of what I do. Get information and try to learn. I hope the bone guy can see me soon. Hope he can make me less scared that what I have in me is just dead cement, ready to crumble if it's drilled into.

Please folks learn this about fosamax. Not good.

http://courses.washington.edu/bonephys/opmovies.html

This is an animation from a medical school class with a really dedicated teacher. She made a fabulous site. I'd suggest people click on the jpg for normal bone, then postmenopausal bone, then biphosphate bone. (that's fosamax) You will be started. The animations are only about 10 seconds each, but they are worth more words than I have used here.