Well I finally have answers from the Dr who did my fusion (L5-S1) and, after a thorough review of all films/discs and a series of x-rays he sent me for immediately, it looks like we are "almost" certain of non-fusion even this far out. My TLIF was 3/2009. There is more bone growth than before, but still no solid mass (in the correct place, that is). I have pretty severe damage in the disc above and have damaged discs/bones along almost all of the spine. He has given me three options at this point and a great deal of literature to review before I make any decisions. First is to start with a myleogram and then onto surgery to clean up the last fusion and fuse the level above. Second is an SCS (from one of three companies he uses on a regular basis). He says each person is different and the machines from different companies work differently on them.
Should I (we) decide on SCS, he will do the trial and the procedure himself (which makes me feel better because I trust him despite the non-fusion). He is a very good and very well known Neurosurgeon and I know he will be more cautions than a local small-town Dr just trying to sell a system. He also requires at least 50% reduction in pain during the trial before he will even consider placement of the permanent SCS. He says it is pretty easy to place them, but very hard to remove them and that anything less than 50% pain reduction is not reasonable in his professsional opinion.
The third option is to continue with the RFA's and PM as I am doing now (though I am considering a change in PM practices). I'm just not comfortable with the flip/flop attitude and strange office interworkings going on there. I will still get the RFA done on the 20th of Sept before I make any additional decisions. It will buy me time to think and to research.
This NS I saw was wonderful about me having gone to someone else a year ago for determination of why I am still in pain. He even agreed completely with the reports after he reviewed the CT's and MRI discs. He actually instructed me to go home and rest and then do some research on the internet about the SCS units and how people really feel about them. I was able to tell him about HW and how I use it to help me in situations like this because the people on HW are here to get well and to help each other. He was honestly surprised that I was even familiar with the SCS process (including psychological eval), but I explained that several of our members have tried SCS for pain control.
We did discuss a pain pump because of the damage to my stomach, but he is not in support of something like that because he is concerned about the physicians who do the refills and infections that may be caused by refilling the units so often. He also feels that pain control is not often eliminated completely by the pain pump and that breakthrough meds are often necessary.
So now I have some decisions to make. I know I can search for SCS info and see what is on HW. I have done a little of that, but I'd still love to hear opinions of others who have tried them or the other options I have been given.
Thanks my HW family for reading and for any responses you feel you can give. I know the decision is mine, but I also know many of you have already been down this road before.
