Need some suggestions on where to turn next

[confusedpatient]

I'm 13 months post op from a fusion at L4/L5. I was doing great until the 8th month when I started experiencing tailbone pain. It's 6 months later & has gotten much worse. The only thing that helps some is Indocin, an Anti-Inflam. Narcotics help for the first hour or so but then it comes back.I'm taking lyrica for nerve pain from the surgery, but that doesn't seem to help with this pain. I've had 3 injections into the tailbone & SI area that didn't help. An MRI showed a mild bulge at L5/S1. I've had a CT of the sacrum & coccyx which looked normal. If I cough it can be excruciating at times. BM's are painful, and sitting is limited to 20 min. My question is what kind of test should I be asking for? Is a myleogram the next step? I'm really getting frustrated & need to do something for this pain. I have no social life because I can't sit. Any ideas?

Carol

[carol632]

Well hi there Carol from Ohio. I am Carol from Missouri! Not too far apart are we?

I'm going to make a general statement here...if you have to tell your dr. what kind of test to run, then you should probably be looking for another doctor. If the MRI is not showing the cause of pain and your doctor didn't suggest further testing, I would have to say he isn't too interested in doing detective work. Kind of like if the problem isn't obvious, he isn't gonna go digging around. If I'm wrong, I apologize. As to what test should be done...well, maybe a MRI with contrast or a c-scan with contrast. If nothing shows there, then perhaps the more invasive myelogram should be next. I wouldn't tell your doctor though; just simply ask him "what's next? I have this pain and need to know why". He should respond by suggesting more tests. If not, then another doctor is needed.

Good luck....hope you get answers soon.

Carol

[GAWZ]

What kind of doctor are you going to? What kind of injections are you having? I know a few good docs in ohio. Who are you going to now? I might be able to recomend one to you.

[Susiebird]

Hey Carol been wondering how you're doing. Sorry to hear you're still having the same old problems - don't have any answers for you because my tailbone still has the inflammation if I sit for more than 30 minutes as well. I do the best when I sit on an exercise ball instead of a chair....I'm seriously thinking of taking one to sit at on my new job.

[Justoneofus]

Hi Carol in Ohio. I am 7 1/2 mos. fused at l4/l5 also. I was doing fantastic until about a month ago, really giving it my all at PT. CT scans shows solid fusion for me. But, I have new and increased nerve pain in my left leg and now also in right. New low back pain and at l4/l5, with some referred pain in mid back at times.

My surgeon says bad part is that he has no idea where the pain could be coming from. Offered to medicate the tar out of me. Not what I want to do if I can help it. He said if I am no better by mid January, of sending me for pain management.

Well, if pain management is to FIND and TREAT the pain, fine. BUT, if it's just to try and just make me comfy by medicating me.. that is not acceptable to me this early in the game.

If I have not seen a significant improvement by January or get worse beforehand, I will be asking the doctor to start doing search/rescue work, or else refer me out to another surgeon to do so.

It's way way to early for just sending me to pain management without trying to find and treat it properly.

I hope you too take this stance as well. We have to be in total charge of our care, the docs wont do it for us.

Take care. Tammy