LizaJane,
I don't have much to add. I'm pretty much of a dumbbell where it comes to any involved surgical things. But I'm sorry that its come to this. Yup, like someone hit you upside the head with a 2x4 (or mallet). I'd been following the posts about the screws loosening and the healing not going well and was wondering what a solution would be. This is the only solution?
Well, my quadriplegic son had a surgical cage placed in his fractured neck within 24 hrs of the accident last Sept. I've seen the x-rays and it looks just like a wire mesh cage, but it helps support his neck (along with the titanium plates & screws) and also allows for bone regrowth. He has some limited ROM in his neck now, but not severe. (I wish it were true for the rest of his body).
LizaJane, I was glad to hear that David was with you to act as a helping hand, but I hope that you'll take a bit of time to mull this over. Decisions like this are incomprehensibly intense & complex. If you do have this done,(rather - when...) I hope that it is with a group or team, rather than place all your trust in just one surgeon. They all have their specialties, and your case is mighty complex. Lotsa things going on. I think you need to gather a surgical team to help you.
I dunno what else to say, except that I'm sorry you are going thru all this.
Climb under that comforter and watch some old Bogart or Carey Grant movies-(the B&W ones- not colorized)- 'zone out' for a while.
I'm thinking of you.

Oh no
 

I am so sorrry about this. Just one more opinion,or at least gently
sit down and think it through. That Dr. seems so cruel with his words.
And that's so sad,i hope he gets a big ,old ugly, nasty boil on his but.
Good luck,LJ :( Sue

Hold the Mallet
 

So sorry that it looks like more surgery in the future - and thank goodness for extra support with you (David) - dont blame you for wanting to curl up and hide....

At least this isnt emergent - you can take some time to prepare - and get second opinnions - I know nothing ever guaranteed in medical world but hopefully this next surgery will do the job..... you know you have all of us to lean on...

Hang in there.... snuggle up with your fuzzy kids and let them share some purrs and realaxation with you....

Thinking about you......:hug:

Okay you guys, you helped already..
 

After spending most of last night vegetating under the covers and watching TV (why is there never anything light to watch when you need it?) I began getting back my ability to remember the bigger picture. It was like I'd forgotten I'd gone to the Mayo Clinic, and today I got out the report the Mayo surgeon had sent me, and re-read it. He'd agreed that there are people who have "late fusion" and that bone growth stimulators can be helpful. He reassured me that the loose screws were not going to do me harm.

He suggested using the stimulator for 3 - 6 months and getting a repeat CT scan to see if fusion was occuring. He said if the pain increased before then, I could have a re-do, and if no fusion occurs and the pain increases, I could get a re-do. He thought I'd end up with surgery, but thought the plan of waiting this out was just fine.

So I'm taking a step back. The pain I have is tolerable. It really is. It's not fun, but I'm okay with it becauses it's mostly about changing positions, twisting, reaching. As soon as I stop, the pain is gone. For instance, I'm not in pain justs now, but as soon as I try to get out of the chair, I will be. My back will be cramped and stiff and hurt. But after a couple of steps, it will be fine again. I can sleep through the night with meds. I can walk up to a mile and half wearing a brace. Overall, as I think about it, it's tolerable. So I'm going to wait this out a bit longer. It's only two months that I've been off the fosamax, steroids, and using the stimulator.

Thank you all so much for helping me to get my center back.

I showed David and his wife the report from Mayo today, and he agreed that it seemed more thought out than what the surgeon said, and laid out a nice plan. So I feel even safer.

Can you imagine---People I have met here have become so real that we've met in the "real world?" It's totally amazing to me.

I see that he has been in practice a very long time. I think I would consider getting an opinion from someone younger and less likely to be so set in his ways and also who is more open to discussing all of the ramifications of this with you. He is, no doubt, a capable surgeon, but his manner makes him sound like a hard *ss unwilling to consider other alternatives or even talk about them.

Cathie

Sue:

You DO have a way with words here.... Heh heh heh...

Cathie

Wow, the phrase "life isn't fair" hardly covers it, does it? You have just really had some really crappy stuff happen to you. I am so sorry. My heart goes out to you. It sounds like you are a testament to the tenacity of the human spirit, however. What a strong person you are, and an inspiration to me! Which doen't mean you can't take a little time off to climb into be with a big bowl of Cherry Garcia ice cream and watch tv for a couple of days without showering or changing clothes or combing your hair. That usually helps me a lot. By then I feel so gross I have to get up, and after a shower I can sort of face living again. Well, this just stinks, and I wish it wasn't happening to you. I will be sending positive vibes your way,and holding your internet hand and stroking your internet brow. Wish we could make this go away for you. Best of luck for recovering emotionally from all this news.

Soo every once in a while..
 

our personal 'gyroscope' gets knocked to the floor.
We get up, re-orientate and re-balance. Then teeter on as best as we can.

It's a good thing to BE or NOT be in a hospital by our own choice. Able to learn and make clear choices and make informed ones.

I guess that's why I'm urging you to get the TESTING out of the way ASAP, so you have a better handle on the NOW of things. Then, it gives you more time to decide what to do and by whom. Also by the specialist you and trusted docs deem to be THE BEST for your situation. It's a choice you need to make and only you, but expert 'input' and 'info' improves the quality of your decision. Finding docs you trust with YOUR life is a challenge for all of us. Being a 'hot potato' isn't fun and doesn't go away, unless you're very, very careful.

That twisting, turning stuff? I've had it for years after a few fractured ribs....what always comes to mind is the 'Men in Black' zombie character that always has to sort of 'gronch' all over before he can move.. Yep, GRONCH! is a sound I hear IN my brain when I do those twists/turns and other motions!
[Rib incident long prior to PN, horse I was on fell, I hit hard ground at about 12-15mph -I don't recommend it]

Hugs good person! This time what happens will be the 'charm' - Think positive? - j

LizaJane
 

I'm really sorry that you are battling on so many different fronts w/ no real respite on any. I'll only echo many of the other members that as long as you are not in an immediate emergency amd can live w/ and manage the pain to tolerable levels then to get whatever tests need to be done in the immediate future and then to decide as Dahlek said on what to do and when. Like Glenntaj and Bob said I think that a skilled surgical team would offer you the best opportunity to have your situation addressed right.

Since I'm still new to the forum I probably missed this from one of your earlier posts but would bone morphogenetic protein be at all helpful to you or did it not work - sorry if I'm retracing old steps. I do hope you will get some lasting relief soon - many good thoughts to you.

Alkymst

frightened and angry and I don't know
 

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.