hit upside the head by surgeon update
 

I've been on the board only sporadically lately, I know, and I feel guilty about coming and posting about myself just now, because it feels selfish--like I've been involved with things going on in my own world and not meeting all the new folk here, so posting about myself feels, well, not totally right.

If you recall where I've been at medically, please just jump to the last few paragraphs, as I'm starting with the backstory.

That said, I got hit upside the head today. My old friends here know that I've had neuropathy since 1999, idiopathic, and when things seemed pretty stable, developed a cyst in my spinal canal and had surgery last February. That's one year three months ago. You guys were all amazing to me through that ordeal, a laminectomy and fusion with rods and screws.

I've had continuing pain in my rear, and in dec I learned that the screws were loose in my spine, and that there'd been no fusion. My doctor was very upset to tell me the surgery was a complete failure, but he told me, and said I'm going to need to have it done all over. He said that over time I'll have more and more pain, and when I'm ready for surgery, come back. The surgery would be removal and replacement of the current rods and screws, then flippign me over and through the front putting in cages between vertebrae and removing the disks. He'd go down one more level, to S1. (Currently, I'm "fused" at L3/4/5.)

(This procedure is called a 360 degree fusion, or a "PLIF and cages"and for those interested in carpentry--here's a link explaining it for patients, though truthfully, I can't really digest it all. )


http://www.spineuniverse.com/display...ticle1363.html


I learned through searching online that meds I was on interfered with fusion: fosamax and dexamethasone nasal spray. I also learned that bone growth stimulators, machines very similar to the rebuilder, can lead to over 60% fusion when started one year after the surgery. So I wanted to go off the bad meds and use a stimulator and hope for fusion.

In March I went to the Mayo Clinic for a quick visit to ask one question: Is it dangerous to have loose screws in my vertebrae? It seemed to me it could be, that moving screws would damage the bone and make things worse. I didn't want to do myself damage by waiting this out another year. The guy at Mayo said it's okay to use the stimulator. The screws are making only micromovements and won't hurt me. The surgeon there recommended that I use the stimulator for 3 - 6 months, followed by a CT scan to assess whether there is porgression of my fusion. If I do not have evidence of ne bone growth afater the trial and my back pain increases, I will need revision. If my pain increases before the 6 months, I should just get the revision earlier. That felt good.

In the meantime, I'd been waiting for an appointment with a spine surgeon here who considered the top man, Dr O'Leary, who I thought I'd want to use if it comes to that. I had my first appointment with him last month, and my second today.

And, over the past couple of months, even with the stimulator, I'm definitely having more pain. I'm doing Feldenkrais, which is very helpful, and I'd be much worse off without it. I've gotten acupuncture, but not recently as it seemed to have plateaud. I'm "working out", doing controlled exercises for my quads, and upper body. And I take some oxycodone at night before sleep, because turning is the most painful movement, and turning in my sleep awakens me.

BOY HAVE I GOTTEN WORDY. SORRY!

Dr O'Leary ordered a CT scan of the spine and bending and extending films. Wings is in town with his wife, and he kindly accompanied me to my appointment today, as I get flustered and forget my questions, or don't write things down, when I go alone.

Dr O'Leary shocked both of us by opening the conversation with a question: "When would you like to have the surgery?" I wasn't at all prepared for this. Now while he's got zero bedside manner, the man is NOT arrogant or cold, he's just, well, like a computer. He's following some progression in his conversation that covers his bases, but it threw both of us off. Neither of us asked much or found the opening to ask, or write much.

He just said this: That there is no chance at all that I will heal. That the bone stimulator is not going to work. That he doesn't know if the pain is coming from a screw, either one or all, or from the unfused joints, that these questions are not relevant, because the entire area is a mess, and pain could be from everywhere at once. I'm not in danger from not getting operated on immediately, but I'm not going to gain anything by waiting. He was pretty clear. He would not answer questions about prognosis, healing after surgery, or, well, anything about the surgery. He says I need a myelogram and scoliosis films, and based on them he will decide if I need a discogram. He is SURE that the surgery will be removal of the screws that are in place now and all the hardware, then replacing it. (This is done with me on my stomach). Then they'd turn me over and go in through the front and remove the disks between vertebrae and replace them with cylindrical "cages", with holes, which bone grows through to fuse. That much is definite. But depending on how the scoliosis looks, he may have to change details of it.
And depending on the vertebrae and disks above and below the current fusion, he would extend it up or down.

I feel like I was hit on the head with a mallet. A myelogram was scheduled for next week (I'm going to cancel because I am not ready). The whole plan of waiting for fusion seemed tossed.

David observed how I was moving and what I could and could not do, and thought I'm more limited and disabled than I realize, and have come to accept more pain than I realize. He thinks it's time to do the surgery, that it seems obvious to him as a layman that I'm not going to fuse with loose screws allowing movement. Another friend said that all my movements have grown more guarded over the past few months, and that I dont' walk the same, climb steps, or turn and reach the same. I think they are correct; I've come to accept this state.

It was wonderful having a braintalk friend with me, someone who could be a real support, making sure I was hearing what was said, and taking notes when I was in an emotionally shocked state.

I know there's no emergency, and I dont' have to do anything today or tomorrow, but I'm realizing that this is going to happen, even if I continue the full 6 months. It seems way too much of a job these stimulator electrodes are being asked to do, in the face of failure of the metal.

I don't know what to say, or what I'm asking for, or if I'm asking for anything at all. I feel miserable, totally miserable, like I've been in a state of denial and have been pushed out. I feel I need to spend time under my comforter watching TV, although probably, a game of ping-pong, which stresses NOTHING would be better for me.

Oh jeeze I've gone on and on and am all over the place. But it's the update.
And you guys are my neuropathy friends, not my "spiney" friends. This is the board I've bonded with, and it seems no matter what is going on, it's here that I want to share.

As an aside or PS: I'd been diagnosed with autonomic neuropathy involving the bowel. Before the surgery they did manometry to measure rectal pressures to see if the muscles were contracting properly strongly. They were not, and they said it's the neuropathy. But I've learned, mainly from looking online, that what is going on is a rectocele, or prolapsed rectum. So that's going to have to be taken care of before the back, anyway. So nothing has to happen tomorrow.

It just seemed that way in the doctor's office.

Hit over head with mallet.

sorry to hear that your back did not fuse. Its frustrating and scary. You have a lot on your plate, i hope you get on the road back soon. It is amazing how we can make adjustments to pain and limitations and not even realized the extent that we do ourselves.

((((((LizaJane)))))),

I'm sorry that the surgery has failed :hug:

But, I don't see what the great rush is to do the re-surgery (is there such a word??) now!!??

I've never had spinal surgery. But, I do know that I would be thoroughly put off by a doctor that rushed me along the 'production line'.

It sounds to me like the bone stimulator was a 'reasonable' step to take now and that's what you've gotten your head wrapped around. I wouldn't do the surgery just yet until you've accepted that it needs to be done now.

It might only be a matter of you sitting down quietly and thinking about it for a week or so. The problem (and the shock) might be totally because of the doctor's method of delivery. You might have more questions which you should write down and take to another meeting with the doctor. (I always take two of everything to my doctor when I want to discuss something -- that helps to control the flow of the discussion.)

Whatever you decide or whenever you decide to re-do the surgery, I hope that you get absolutely perfect results this time.

Hugs.

Barb :hug:

LJ

I can sure understand why it feels you have been hit over the head with a mallet. I can only say that it might be nice to start getting the "mallet" out our psyche. It is not doing any good there.

So, maybe the ping pong would be good for you, maybe you need a little more comforting right now. I know how hard it must have been to post about yourself when you feel guilty about not posting enough to help others . . . been there, done that . . . so that also tells me that you really need some good old-fashioned comfort -- climbing under your comforter (wonderful article, wonderful name) and watching TV or whatever.

I would also think you need a little distance from all this for just a bit. I am not at worried that you would just take refuge and avoid the whole problem. You would be much more likely to feel a little more refreshed while giving yourself time to renew your resources, of which your inner strength, resolve and conviction are right at the top of the list. You can let go just a bit for now and not lose any of that.

rafi

I am sorry to read that you have to go through all that again, i know you tried hard enough from your end.
After reading about the cylinder type he wants to do for you, what i could make out of it, sounded like there are higher percentage rates of successful fusions with this method, i really do hope next time will be succesfull.
all the best
Brian :)

I remember jumping BIG fences....
 

on horses and at times on the approach and going over my brain would be screaming {MOTHER!!!!!*******!!!!!!} I got over, but that dratted 'sinking' feeling stays with you, makes you cautious till the next time. It's something that sticks with you for sure. Like you I like my body.....INTACT thank you!
Do you really TRUST this doc? Sounds like he was honest, but one guy's prognosis is not another guy's and the more 'rounded' the picture, the better or the lower your expecations can be? But, this guy is talking MAJOR bodily invasion and given all in all...what are the odds? Even, win, place, show or also-ran? Trust in a doc, especially a surgeon doesn't require a winning personality. Skill and honesty vis-a-vis in expectations and outcome...realistic, I guess are paramount about now.
You weren't wordy at all! You just put it out there in a far more candid way and with lots more courage than I could admit to doing!
I am Glad David was there to see and provide some very needed 'outside' observations...It takes that at times to help you SEE what you think will need to be done, in whatever way, with a better perspective. Our bodies are 'sneaky' in that we compensate in ever so many little ways....sometimes for good, othertimes not? When I worked with the horses, you really, really had to look, as they couldn't tell you their specifics...David is astute in this.
As for possible autonomic issues, WAIT, see what surgery can do...there are, as you well know, lots and lots and more factors that could be coming into play there. Many not permanent, which I fervently hope. Good things could result-in time.
YOU are one of the most objective and clear thinkers I know, and rite now you are as I was when the doc 'found A LUMP' in my breast...wait till all the tests are done and the 'jury' is in. Do NOT, promise me, waste too much energy on the What IFs....wait till you know which bear you are wrestling with? If ya need a hand to hold there are a heap of folks here to do so...NEW YAWCK Broad HUH? Hey! I'm a Joisey Goil! [That. I understand, is sort of Bronx-speak about Jerzee-ites]
Take your time letting all the 'fudge' to sink in...Get the tests done ASAP so's you can THINK on it in a better 'window' time frame as well. In my view, get them all the heck over with ASAP! I do know what you mean about those tests in the tunnels on the tummy tho...can't breathe for spit! HAD to be designed by men! [present company excluded, naturally!] Heapers of HUGS? - j

Hi Liza
 

I have had spine surgery too. Not like you, I had a discectomy but at 2 levels.

I am just as bad today as I was back then before I had the surgery. My father has had 2 back surgeries and 2 neck surgeries, and we agree on one thing, back pian is generally chronic, to some extent even after surgery.

I don't like being in pain, and often entertain the idea of having another surgery, but I have alot of scar tissue, and this is a concern for the surgeon.

If you have the surgery will it fix you? And for how long? If the answer is "yes" it will fix the problem, and you will not be in pain anymore, than I would embrace it.

If it's not likely to fix the problem or your pain levels will be similar, than I would try the other more conservative approaches first.
I know your a tough girl but just listening to your description of the procedure gave me the "willies"!:eek:

It's nice that David was there with you, that's great that you have that support!

Time...
 

Well, this is a bummer.

By coincidence I attended a 10 hr seminar yesterday on chronic pain.(mostly headache and fibro).

One brilliant speaker, was explaining some hypothalamic neurostim experiments and shared with the audience (many doctors in the mixed audience), that TIME is an essential factor to consider. In treating certain intractable HAs, neuro stim was tried in the hypothalamus, and when no effects seemed apparent dropped. However, in Europe they left the electrodes in and over a YEAR, improvement occurred. Now here they are going to try again. They never expected up to a YEAR to be needed at least for this procedure. So he cautioned all in the audience to be paitent with patients...give TIME a chance. His name is Todd D. Rozen MD. If you Google him there are many articles on the net which he used in his portion of the program.
Here is a sample of the content of the lecture I attended...
http://www.achenet.org/articles/84.php
The melatonin information was fascinating! I will be putting that up on the Headache forum here soon.

I am now preparing a very interesting thread on Fibromyalgia, to share what was said yesterday which I found very interesting and helpful. I'll be putting that up here at NT this weekend.

But back to TIME. What concerns me is that you wll have to "fuse" the new
surgery --and what if your assumptions as to fusion failure are not complete....in that there may be other physiological factors involved besides the drugs you took, by accident? This procedure seems very extreme and invasive. I can't see you being flexible at all after it. (you are not flexible now)


I have never had invasive procedures in my back...I am not very flexible due to arthiritis/spurring etc and some spondo... but I live with it. Some days I have pain..others not. I have chronic pain from falls, PN, etc. I manage. I don't expect much now at my age...so just being able to get around, do most things is my goal. I don't use opiates, but I use patches (Salonpas and Lidoderms), some Tylenol on some days, and 600mg Ibuprofen on days I work. My knees are painful, my leg injury and now my lower back/pelvis is acting up some. (my job involves lifting weight and moving around)
I use AlkaSeltzer several times a week as well. I rest alot, some days and now see positive results with my light visor.

Liza...you need to balance your goals, with careful thought to the highly invasive nature of this new proposed procedure. I personally would measure the TIME and see if you really get worse. You may not. Doctors are very fallible. If you deteriorate significantly with TIME...then you can be prepared for those alternatives.

I could get really complicated/technical with you about this issue--
 

--Lord knows I have in the past :D --but it occurred to me that Aussie rather succinctly summed up the situation. If in the end it does not seem you can avoid the surgery (although second/third opinions on that question would not hurt), it's time to concentrate on getting it done correctly this time, with a surgical team you feel comfortable with. It does seem at least on the surface that the deleterious results of not having surgery overmatch the potential deleterioius results of the surgical process. (We all want you movin' and groovin' for the rest of your days.)

I'm glad David was there with you to act as "wingperson" during the visit--sometimes it does take an outside perspective to get handle on the pros and cons, plusses and minuses, of major medical procedures.

And, look at it this way. It's pretty much guaranteed that if you have surgery you'll be inundated with Dove bars by me. (And Melody will bury you in muffins.)

Oh Liza Jane.

I read your post with such interest and such caring. You have been so kind to me and listened when I spoke.

Of course all the others have given you good advice, they know what they are talking about. All I can do is nourish your soul. Send you loving hugs and thoughts and.... what I will suggest is that, because are all stressed out, why not light some beautiful candles, put them around the bathroom, (and if you can get in a tub, get in a tub of hot water and soak), or get in the shower and let the hot water fall over you. Use some lavender soap.

The other day, my girlfriend who is having a horrible marriage and her son is an alcoholic, well she wanted to just end it all. I listened and listened as she was downing a glass of wine. That's how SHE copes with her stress.

I told her "put down the glass of wine, get your candles (she has quite a few), go in and take a hot bath and light the candles and let the glow of the candlelight just soothe you. Breathe in the aroma of the candles.

Close you eyes and let your mind drift off.

She did this and told me it was amazing. Of course she still has the same problems, but now she just goes into that place in her head where she goes "away" for a spell.

Thankfully, you have pain meds which you can take advantage of.

When you come to the right decision (the one that is right FOR YOU), hopefully, you'll share it with us and we can send you much love and hugs .

You are in my heart.

Melody

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.

studies for the interested
 

1: Spine. 2005 Nov 15;30(22):2516-22.Click here to read Links
Alendronate inhibits spine fusion in a rat model.

Hospital for Special Surgery, New York, New York 10021, USA. huangr@hss.edu

STUDY DESIGN: A posterolateral lumbar fusion model in rats.
OBJECTIVE: To study the effects of alendronate on posterolateral lumbar fusion in rats.

SUMMARY OF BACKGROUND DATA: To our knowledge, there are no studies that show a significant inhibition of manual palpation-assessed spine fusion by alendronate.

METHODS: A total of 75 Sprague-Dawley rats underwent intertransverse fusion with 7-tailbone autograft at L4-L5. Animals received saline (control), alendronate equivalent to human dose (dose1, 5 microg/kg/day), or 10 times the human dose (dose10, 50 microg/kg/day) via subcutaneous osmotic pumps starting the day of surgery. Eight weeks after surgery, animals were euthanized, and fusion was assessed by manual palpation. Radiographic area and optical density of fusion masses were calculated. Histomorphometry was used to assess the percentage area of fusion masses occupied by bone or marrow tissues. RESULTS: Manual palpation fusion rates were lower in alendronate groups (50% and 40%, respectively) than in the control group (95%, P = 0.002). Interobserver and intraobserver kappa values were high (0.97-1.00). There were dose-dependent and statistically significant (P < 0.001) increases in fusion mass area and optical density with increasing alendronate dose. Fusion masses in dose10 animals had significantly higher percent area of bone tissue (P = 0.01) and lower percent area of marrow elements (P < 0.001) when compared to control animals.

CONCLUSIONS: Alendronate inhibits spine fusion in rats. Fusion masses in alendronate-treated animals appeared radiographically larger and denser than those in control animals despite lower fusion rates. Quantitative histomorphometry confirmed that alendronate inhibited bone graft resorption and incorporation. We recommend that patients undergoing spine arthrodesis should not take alendronate until fusion is achieved.

PMID: 16284589 [PubMed - indexed for MEDLINE]
Spine. 2005 May 15;30(10):1116-21.Click here to read Links
The influence of alendronate treatment and bone graft volume on posterior lateral spine fusion in a porcine model.
* Orthopedic Department, Institute for Experimental Clinical Research, Aarhus, Denmark. xueqingyun@hotmail.com

STUDY DESIGN: An experimental animal study with randomized, paired control design was conducted using a porcine model.

OBJECTIVES: The aim of this study was to evaluate the influence of alendronate treatment and the significance of different amounts of bone graft on posterior lateral spine fusion.

SUMMARY OF BACKGROUND DATA: Treatment with bisphosphonates inhibits osteoclast-induced bone resorption and increases bone quality and density. It has been widely used clinically for treatment of osteoporosis. Bisphosphonates have been reported to elongate the callus remodeling process during fracture healing. Bisphosphonate treatment may modify bone graft healing and the remodeling process in spine fusion. The bone resorption phase exists during the healing process. Extensive bone graft resorption could reduce the basis for new bone formation, which could be an important factor for failure of spine fusion. Furthermore, different amounts of initially applied bone graft may influence spine fusion rate and bone graft incorporation process.

METHODS: Twenty-two pigs were included in the study. Eleven pigs in the treatment group received alendronate 10 mg/day p.o. for 3 months after surgery. The other 11 pigs received no bisphosphonate and served as control group. Posterior lateral fusion with the CD Horizon system was performed on the lumbar spine using different amounts of autograft (4 g on one side and 8 g on the other side) in all animals. The fusion was evaluated using radiograph, CT scan, and histomorphometry at 3 months after operation.

RESULTS: There was no statistical difference in either fusion rate or fusion mass volume between the two groups. The fusion rate based on radiograph was 75% on the 8-g autograft side and 45% on the 4-g side (P < 0.05). The mean volume of fusion mass was 2.36 cm3 on the 4-g side and 3.29 cm3 on the 8-g side (P < 0.01). No difference was found in either trabecular bone volume or fusion rate between treatment and control groups using histologic evaluation.The treatment group showed a higher fibrous tissue volume(P < 0.05), higher proportion of woven bone structure(P < 0.001), and lower bone marrow volume (P = 0.088) in the fusion mass. Different amounts of bone graft did not change the tissue composition of the fusion mass.

CONCLUSIONS: Alendronate treatment in this study decreased fusion mass remodeling without inhibiting fusion rate. Increased amounts of autologous bone graft could improve the fusion rate in this experimental spine fusion study.

PMID: 15897823 [PubMed - indexed for MEDLINE]

: Spine J. 2004 Jan-Feb;4(1):36-43. Links
The effect of alendronate sodium on spinal fusion: a rabbit model.

Department of Orthopaedic Surgery and Rehabilitation, Walter Reed Army Medical Center, Washington, DC 20307, USA. Ronald.Lehman@NA.AMEDD.ARMY.MIL

BACKGROUND CONTEXT: Bisphosphonates affect bone remodeling and increase bone mass through the inhibition of osteoclasts. Their effect on osteoblasts, and the balance between osteoblastic and osteoclastic activity on bone turnover and healing, is not completely understood. Specifically, the effect of bisphosphonates on spinal fusion has yet to be determined. With the increasing use of bisphosphonates in the elderly population, this effect needs to be delineated.

PURPOSE: To evaluate the effect of alendronate sodium after an intertransverse process spinal fusion in a rabbit model.

STUDY DESIGN/SETTING: Randomized double-blinded in vivo study of the effect of alendronate sodium in a spinal fusion model.

METHODS: Fifty New Zealand white rabbits underwent a posterolateral L5-L6 intertransverse process arthrodesis with autogenous iliac crest bone graft. The rabbits were then randomly divided into two groups. Group I received 3 cc of saline placebo per oral gavage, and Group II received 200 micrograms (approximately 0.05 mg/kg/day) of alendronate sodium dissolved in 3 cc of saline per day for 8 weeks. Upon completion, the rabbits were sacrificed and the lumbar spines harvested, radiographed and graded for motion across the fusion site with manual palpation. Two independent pathologists then prepared and sectioned each left and right fusion mass. Three random x10 fields were examined and graded for both the cephalad and caudad ends of each section (516 fields). Fusion quality was graded using an established histological scoring scale (score 0 to 7 based on fibrous and bone content of the fusion mass).

RESULTS: Two rabbits died on the day of operation, and 48 rabbits survived the operation. Five additional rabbits died within the first 2 postoperative weeks. Thus, 43 rabbits (21 in Group I, 22 in Group II) completed the 8-week course of treatment. Grading each side separately, 26 of 42 fusion masses (62%) in Group I and 24 of 44 fusion masses (55%) in Group II had radiographic evidence of fusion (p=.76). With gross palpation, 11 of 21 motion segments (52%) in Group I versus 13 of 22 motion segments (59%) in Group II were determined to have a solid fusion (p=.76). Histologically, Group I had a higher median score (6.0; range, 0 to 7 vs. 1.0; range, 0 to 7; p<.0001) and a higher fusion rate (76% vs. 45%; p=.004) than Group II.

CONCLUSIONS: Alendronate sodium appears to inhibit or delay bone fusion in a rabbit model. Presumably, this occurs as a result of uncoupling the balanced osteoclastic and osteoblastic activity inherent to bone healing. These findings suggest that a discontinuance of alendronate sodium postoperatively during the acute fusion period may be warranted.

PMID: 14749192 [PubMed - indexed for MEDLINE]

yuk...
 

evidence is mounting I guess on these drugs. You know, Liza, that bone
necrosis occurs with them too? That is the dark underside that is coming to
light.
http://annonc.oxfordjournals.org/cgi...full/16/7/1207
http://www.cancerpage.com/news/article.asp?id=8122

I am worried that this may occur in non chemo patients at a slower rate, and
with time more will show up with negative results from these drugs!

So, given this--
 

--what might the dietary/supplement/exercise options be, to minimize bone loss and see if we can wake up some of the cells?

Can you put together a weight-bearing exercise program of any kind? What will your sinews/muscles tolerate? (Light weights/high reps?)

And (I'm sure Mrs. D will have suggestions here)--what kind of calcium/magnesium/Vitamin D3 regimen would optimize your bone condition?

BTW, I certainly empathize with your situation, and absolutely want you to avoid the kind of bone breakdown that Billye is suffering, but you're wrong about one thing. You also carry off these situations with grace. Maybe wry, sarcastic grace, but grace nonetheless. :hug:

I fully understand the
 

delemma--danged if you do, danged if you don't take the adrenolates.
I too am/have been learning the 'hard way' about bone loss [far more than I ever could have imagined].
I fear that physicians are not as up to date on the newer cautions in the prescribing info as necessary. In my case I've been taking the adrenolates for over 10 years and a recent 're-read' of the info NOW includes the suggestion to take a 'break' at a 5-year mark. The info does not say for how long tho [I suspect 'THEY' don't know].
I am told and have read that other therapies are be available so there is hope. I will be finding out very soon tho, after more tests and a visit to the endocrinologist. I am sure that Billye is in that process of 'finding out' as well.
Every medication has the potential to help or hurt us. We usually find out after a precious price has been paid.
Liza Jane, I emphasize with your concerns and fears. Your concerns are far, far greater than mine. Below is a link on thyroid activity and how it can relate to other issues and conditions, particularly medications and supplements:
http://www.powerofprevention.com/thyroid/links.php
It seems that the whole endocrine system is linked to bone development and retention. The more I learn, I understand some, and am amazed by how complicated we humans are!
As I find out more, I'll post resouce sites.
For now have a couple of these::hug: - j

Fosamax
 

I'm so glad you brought that up didn't know you have been on that.
All my Drs. and Bob's Spine Dr. believe it or agreed on something,
which is a miracle in itself, no Fosamax. Well all of them to many
serious side effects. Fosamax is very bad for people with certain
heart conditions. And not everybody knows they have the heart
problem. It was so odd to hear this from 4 different Drs. They all
reccomended high does of calcium,vitamin D and Magnisium also
a lot of green leafy vegetables.

The Spine Dr. said a lot of people see these ad's on TV and think or
lead to believe these are miracles. Yes they say the side effects at a
fast pace at the end. He really feels they can do damage.This does
bother me,1 don't thing i've ever heard 4 Drs. agree on the same thing.

You are a very brave lady,You do your homeword and in retun we benefit
from it. Thank you so much..:hug: :hug: Sue

osteoporosis
 

I have never been real enthused about the osteoporosis drugs out there. My family history of osteoporosis is very strong. My mother, who became very inactive, had a hysterctomy, refused HRT (prior to fosamax) lost about 6 inches in height. She now had pretty bad Alzheimers, so we dont really know how much pain she is in, but she denies it if we ask....on the other hand she doesn't know who we, her kids are.

You have to weight bear to prevent osteoporosis, and you need adequate intake of not just calcium, but vit. D and other minerals...It is good to take a balance.

Weight bearing can be as simple as walking a few miles even if painful, and lifing soup cans in the kitchen. A good clinical exercise specialist or physical therapist can help with exercises. They are essential. I know, that I at times have not followed thru as well as I should have, but something is better than nothing. Also, have your gait analyzed, in case you need orthotics...also that needs to be done every two years.

I stuck with an estrogen patch, very low dose, but that works OK for me, it isn't for every one....I have not had a bone density since my go around with IV steroids back in the fall of 2005, but I am not going back on them unless it is a matter of life or death. I dread having the bone density scan. I feel like I can't take any more bad news.

My gastroparesis will likely prevent me from taking any fosamax like drug as well.

Drugs are often dumped on the market too fast, especially if there is a market for them, and then other drugs which are potentially life savers for orphan diseases sit on the shelf because there isn't money to be made.

Men get osteoporosis too, but at a later age. Osteoporosis is more common in people who weigh less than 127# that sounds so specific...127!

This is one issue that speaks to pain control....if you don't have good pain control, you can not be active. I don't care if it takes morphine to keep some one upright and walking around, it is justified. When adequate pain meds are withheld and people become immobile, osteoporosis and pathological fractures occur, and this is devastating. I brought this up to my physician, and have had fairly good luck with pain control, although, I don't require morphine... yet. Without pain meds that work, whatever they may be for your specific case, discuss your immobility with the doctor, and make sure you get help, before disability increases.

I am wondering if there are any class action suits on the alendronates?

Knowing what to do is tough. We are all looking for breakthrus and ways to alleviate suffering, and sometimes, what gets recommended to us only contributes to suffering....It is a really hard road to travel.

Speaking of interventions to alleviate suffering....there are morphine pumps...I know they have a lot of downsides and contraindications, but some spinal patients have had good luck with them. It won't work for me, but maybe some of you could benefit, just be very very informed before you make any decisions. Consider all the downsides of spinal intrusion.

good advice
 

I just saw my feldenkrais person, and told her about the recommendations and my worries. She had referrals to people who specialize in bone "Bones for Life" a subgroup of practitioners with her training, and a machine the WBV which is supposed to stimulate bone growth.

But the most interesting comment she had was why get surgery like they suggest when I could just continue to wear a brace? If the brace works from the outside, why not use it for life?

This is a good thought. I'm going to stay with it for a bit.

Good support
 

I have often wondered about a brace myself. I bought a pretty expensive 'support' and you can melt this piece of plastic to conform to your spine...I just haven't gotten around to it....I didn't have a professional look at it though, and I am sure a PT might have some ideas.

I really should inquire about having a PT eval regarding something like that.

Great tip, thanks...It might really help. A brace might beat surgery for you, and gives me some hope that I can get some relief from my dessicated disc thingie too.

perspective
 

I'm trying to take a step back from Friday's doctor's appointment and my latest education from the web regarding fosamax. I feel I got myself too upset, and funny, it was one of those things where the more I learned the worse I felt.

So, I'm wearing a brace and it definitely helps the pain. Definitely. The person who fitted me in the surgical supply store said that the cloth braces with laces are better than the plastic molded ones because the molded ones tend to ride up, and the support is needed low down. It's pretty comfortable, just ugly. Plus, with only one prescribed and gotten, it gets ratty before I wash it, and it's looking a bit tattered. I think getting a couple more and dying them red or black would do me better!

Second, I spoke with another doctor today who said maybe somebody could just scrape the vertebrae up a bit again, like when it was initally done, and off fosamax, and maybe on Forteo (I'd have to check this out but they do seem to think that this one helps grow bone the correct way), I could fuse without having another major op.

I've an appointment with a bone specialist, but not until late June.

There's good evidence that vibration grows bone, and that exercise sets up vibrations which set up electrical fields, or something like that, that stimulates osteoblasts. So there seems to be a connection between why exercise helps and why the electric stimulator works. But also, doing exercises on a vibrating platform the VBV, seems to be the best for promoting bone health.

"Bones for Life" seems a good group.

I'm stressed out, and taking a step back.

My brace is cloth, with a pocket to add this plastic molded device if I want it, just over the low thoracic-lumbar region...the cloth support covers the whole thoracic and lumbar region. I bought the cloth support first, then later thought maybe I needed the plastic, but you are probably right...it probably feels pretty uncomfortable and could cause skin injury.

I do feel better when I use it, I just hate getting all fixed up in it...mine has velcro...it is super duper velcro and it doesn't move at all, but yours sounds like a better brace than mine. Mine wasn't cheap...I think over a hundred bucks, plus $35 for the molded plastic piece which I still have in its package...only problem is my brace has these shoulder harness pieces that after a while hurt my shoulders too...but it beats going without.

I can't help it?
 

I don't want to make light of the issue, but doesn't this all sound like the CORSETS of the late 1800's-early 1900's? Without the velcro, of course.
NOW GUYS! NO JOKES HERE! THIS IS SERIOUS STUFF! It's a middle-body equivalent of a knee imobiliser! Can anyone here really say they are comfy? Doubt it.
I mean, fabric, eyelet ties, the equivalent of 'stays', WHO CARES IF IT WORKS?

I think there are some class action suits about Fosamax and others 'hatching' -not enuf evidence in yet to create fear and discontent? [check out www.breastcancer.org to see if there are...those ladies are ON TOP OF IT ALL!]

I do recall my endo mentioning Forteo...and similar alternatives, but, I've got to wait & see if my stuffing my face w/MANY extra otc supplements mite do the job...tests to follow next week, week after results...maybe? Sigh!

I do know many cancer folks take such treatments/therapies, either during or because of chemo and rads....Seems that what can kill the goose, also does in the gander to many with many conditions/issues...compounded by other treatments or meds meant to do us GOOD but not knowing any of the peripheral 'other things' that make current things, more, well complicated?

This whole thing mite be useful or totally useless, but the Fosamax issue IS going on for those with other conditions....I'll check out what there is between epilepsy [meds], Fosamax and bone loss as well, I'm not unselfish here, I may be facing major molar removal in the future.. I for one, do NOT want my jaw disintegrating on top of other stuff? Maybe this is one of those...we'll know once we 'Get in there' moments.. I sure don't want to find out THEN?

Hugs Liza Jane, you've LOTS to cogitate on... - j

Liza Jane, maybe--
 

--we could get you one of those vibrating chairs Melody's Alan likes so much? :D

Do you know how much of an electrical voltage is recommended in these bone growth devices? I assume we're talking non-implanted device (that would be covered by insurance).

Also, what about the ultrasound bone stimulation route? Have you seen anything on this for failed fusions? (I know there's a lot more on electrostim for that category of failed bone knit.)

I've been pulling up a lot of Internet stuff along these lines:

http://www.fchp.org/NR/rdonlyres/DAE...GrowthStim.pdf

--and the stuff on Spine Health and Spine Universe (which I imagine you've seen); but I can't seem to get specific references to ultrasound and spine, other than many insurance plans will not cover it, and I haven't been able to find sites that explain why or what contraindications are involved.

cycleops---Yes, there are many suits against Merck for fosamax. When you google fosamax, the lawyers sites are prominently placed.

Glenntaj: I have an EBI stimulator, and insurance paid for it. They are apparently used to accepting insurance as payment in full, becaue they haven't bothered me particularly about the copay. I got one bill for a copay and reminded them they told me not to worry about paying for it, and I've gotten no more. I don't know much about the electric current or electricity in general, just that there were studies on it which made me optmistic. You might pubmed on bone growth stimulators AND fusion, or bone growth if you're interested.
I've never heard of ultrasound being used.

Dahlek: The corset is actually incredibly comfortable. It's huge and encasing, and if there were no velcro, very victorian. But I can see how they LIKED wearing these things---you can just let go and let the stays do the work of holding you up. I'm going to see if there's a corset shop which has something similar but prettier.


Forteo: I've been hearing more about this--just another doctor saying, Maybe you should be on Forteo, has anyone suggested it? So I have an appointment with a bone doc in June.

Jane, yes...
 

I should imagine such a 'corset' would do a bit more than 'keep one together' so to speak.

About Forteo...this is interesting:
http://www.ccjm.org/pdffiles/DEAL703.PDF
I'd be cautious jumping onto the bandwagon as lots of info on current known s/e's are sort of vague and for myself, my concerns are related to peripheral fractures...not to mention the cost per month.

I'll do some more searching to see what other options there are...If I recall correctly, there are several options-for the life of me tho, I'm drawing a blank rite now? Guess I'll have to read up more on the 'parathyroid'! - j

I have had a tibial plateau fracture with a rather 'iffy' explanation. It was a non-union for over a year, and they finally ordered one of those electric coils...supposedly it worked...I am not sure how exactly they know that as the fracture was diagnosed on MRI, and they never repeated it. (First they told me it was paid for...then they told me it wasn't...then I told the company that brought it, to take it back if it wasn't going to be paid for...it was a fortune...but then they worked it out, and it was paid for.) I think they work really well on healthy people, but I wonder if they work as well on PNers.

It still kind of hurts there, but my gait is quite off, and I am pretty reliant on orthotics, and it may be time for new ones. I have a pretty nasty case of pronation. I have been tripping and twisting my ankle a lot lately, which means something is off.

I am one of those PNers who doesn't feel their feet well, except when standing for a while and then they feel broken...like broken bones.

I have spinal problems which can not be addressed surgically, so, I don't have much choice other than some exterior support....the braces can be quite hot in the summer which is a big draw back, not to mention, not attractive, but, if it helps you do what you gotta do.

I can't take fosamax--gastroparesis...I have no option other than HRT.

Corsets??? What about Platex Girdles!!!
 

Anybody remember them??? I was 18 and had my first job and my mother told me "you have to buy a Playtex Girdle". I didn't even know what it was.

But I got one. A full one with the legs down to the knees.

Imagine wearing underwear, pantyhose, and then a playtex girdle.

I do not know how I breathed, wearing all those things.

I know it took 10 lbs off of you but where do the 10 lbs go when they GO!!!

Jeez, we women really suffered to look good.

Liza Jane, if you haver to wear a corset, then buy an outfit that shows the rest of you. I mean, if you have to, you have to, but flaunt it girl, flaunt it!!!!!

lol
Mel

wow
 

Hi, I don't know you but ,your amazing. You remind me of my husband. Two years ago his scaffolding broke, he went down eighteen feet. He broke his back in three places ,among other things. Of course it changed his life forever, but he just goes on. People like you encourage people like me to go on. I'm sorry to here about all of this and I will pray for you.

Hey
 

Just got out of the hospital just trying to find out what's going on, got to read this again..Thake care to ever needs it...:hug: Sue

Thanks for the Forteo link, dahlek. I've printed it out and will look before I leap, for sure.

I'm glad to have been there to provide Liza Jane with emotional support, because she was verbally battered. I found the doctor cold to the extreme and uncaring and unfeeling in his approach and demeanor. He controlled the brief discussion from beginning to end and was unforthcoming to the extreme. He refused to discuss pluses, minuses, pros, or cons. The conversation consisted of him opening the meeting with "When do you want to have the surgery". Beyond that, he was only willing to discuss additional presurgical testing to be done. We both had questions prepared but he refused to answer any but the most trivial of them (yes, she can take a vacation before the surgery). I really had nothing to write down except the names of the tests he mentioned.

Poor Jane having to deal with him and with the prospect of another surgery! To me, that surgeon's technical skills are meaningless given his disrespect and arrogance (as opposed to confidence). The thought of being unconscious in a room with my life and welfare in his hands would be unthinkable, but maybe Jane feels otherwise.

We all need a "wingperson" for critical appointments and hospital stays. I'll post an article about the topic, and then add a link to it to this posting.
------------------------
Well, I can't find the article. I'll continue looking for the article, but I don't think our newspaper archived it. Too bad. It was by a retired pediatrician. The problem she wrote about is that doctors often don't think through what they are doing, records are lost or not read, and hospital care is often shoddy. She advocated:

1) Asking for and keeping copies of ALL your medical records. They must be provided by law. Just by your asking, doctors will be more careful and thoughtful with you.

2) Having an advocate in the room with you for all important doctor appointments. Again, that makes it more likely that the doctor will actually think through your situation instead of taking the lazy, easy, automatic path.

3) Having a person in your hospital room with you at all times. With the shortage in nursing staff, post-surgical and medical mistakes are far more common than you'd like to believe, and problems can become critical or fatal before the overworked nurses notice a problem.