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I usually post on the "Back Problems" part of the board, but happened to see your thread. I've had two lumbar fusions, but mine were from the posterior. The pain should not be increasing at 19 months post surgery. If you are fused and you know that for certain, you may want to look for an additional issue that is causing nerve pain.

Are you having the same symptoms of nerve pain that you had prior to surgery? If so, did you feel better for awhile and then the symptoms returned? Or, is this a new pain or in a new location?

Sometimes if there is permanent nerve damage, the symptoms will not necessarily improve...but it shouldn't get worse if the nerve has been adequately decompressed through surgery.

Have you had a recent MRI to see if there is a new issue or perhaps scar tissue is pressing on a nerve?

The bladder or bowel involvement is a big source of concern. I assume you have contacted your surgeon about this.
Thank you so much for your thorough and thoughtful response to my post. I think I have answered all the questions and comments and am open to suggestions. If I can't find a new way to explain my symptoms or the right kind of doctor to be talking to, I have reached a dead end.

I DO have nerve pain that I did not have before the surgery and it has been determined that it is NOT scar tissue (not sure I believe them, to tell the truth).

Yes, I did improve for about 3 months--I thought I was home free and feeling great, finished PT meeting all the goals. Then things started going downhill until I landed in the ER with a "total back sprain" when the nerves set off muscle spasms so bad I could not move. This was something that had been happening a lot, but not to such an extreme. The pain and inability to move usually start to let up after 5-10 minutes and I have learned to carry a pain pill and a muscle relaxant in a tiny bag in my bra.

Three doctors have now told me that the unusually long surgery (unexpected problem with a congenital malformed sacrum that did not show in MRI) left the incision, the peritoneal sac and the back muscles all with damaged nerves. The ab. scar is 7 inches long and 1/4-1/2 inch wide, and I can't wear anything except loose dresses and yoga pants because I can't bear pressure anywhere on that 7 inch line or from that line to my navel.

I see a pain management doctor and he does not expect ANY nerve regeneration at this point. He gives me spinal injections that do help a bit, but I can only get 4 per year. And he is a spinal surgeon who does not see any new problems in my spine. He checks with the fluorscope (sp?) for new signs when he gives the injections.

Yes, I have recently seen bladder and rectal/colon specialists. Testing showed weak muscles and extreme sensitivity in nerves and muscles, but no defined problem. Both said those problems likely stem from the neuropathy and problems may be permanent. I have a cystoscopy scheduled in 2 weeks and a RX for bladder leaks (new in past 6 months). Both Drs. recommended PT--one rectal and one vaginal. I'm taking a while to wrap my head around what is required for those, having researched them. I nearly passed out during my pelvic exam and could not move the next day (nerves fired back spasms again worse than usual, and he was VERY gentle and familiar with ALIF problems),so anyone who wants to put something up there 3 times a week is not on my "comfort" list. My last MRI was in August, after which my neurosurgeon turned my care over to the chronic pain management doctor. The fusion is fine and it DID stop the sciatic pain. The general feeling I am getting from doctors now is that I need to stop seeing doctors and get on with the life that is left to me.

One doctor told me at least 4 times that I would be OK if I got off "all those narcotics," and no amount of explaining would make him understand I wrote I take an average of 1.5 per week and not 15 pills per week. Now I know that doctors and decimal points don't mix ;-). I need to be taking more medication for the pain, but I am afraid of addiction. I may have many years of needing room to add more medication. Thanks for answering and thanks for listening.

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