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

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

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

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

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"!

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

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.

--Lord knows I have in the past --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