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.