[LizaJane]

I'm an occasional poster, dealing now with recovering from a laminectomy and fusion with instrumentation at L3/4/5 because of a large spinal cyst which had to come out. Saw a new spine guy today and, well, I feel like
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.

Hit over head with mallet.

So, anybody have anything offer to me? Though please, do NOT send just "hugs and fuzzies", they don't work for me. I need words. Is this all what's expected with a failure to fuse? Are there other possible ways of handling my case that anyone knows of or has experienced?

[GJZH]

LizaJane,

I feel as though you and I have been going through this fusion situation together. I have been back to see my surgeon last week. I have the cages in the front of the spine. I am fused, but they now think I am getting pain from the SI joint and want to remove the pelvic screw.

You might want to ask Dr. O'Leary if he is going to do pelvic fixation Liza....I was not told about that before my fusion. If he is going down a level they sometimes do or find they need to do pelvic fixation. It is a long screw down into the pelvis. The surgeon that did my cervical fusion told me that the screw will break at two years. In trying to determine why I still have pain I have learned that this screw often causes women pain and now may need to come out...so just know if they want to do this fixation to you it may mean another surgery after your fusion...so please ask about it before you allow surgery.

I just had SI injections this week to determine if I have pain coming from this area. If I do then they will do surgery to remove the screw. They cannot determine why I still have pain. I am fused so it is not from not being fused though I do not know how they can determine fusion when the radiologist could not read the CT scan because of arcing....

I am sorry to hear of your present dilemna...I will keep you in my prayers.

The surgeon that did my cervical fusion told me to stay away from NYC. He said if I go back they will want to go up into the thoracic spine to fuse...They have not offered that to me...but I see they are wanting to go higher and lower with you...though not up into the thoracic spine...It may be that they have no other choice..I trust the NYC surgeons and think there are none greater. I think they dare to do what others would not even consider doing...They have great confidence and surgical skills to match...I have a lot of confidence in my NYC surgeon and have no regrets ever using him. He helped me when others just turned me away...I am certain we will get to the bottom of the pain too...

Although you had a great surgeon operate on you the first time...I think you are making a wise choice in having O'Leary do your revision...