Hi Baileysmom and welcome to Healing Well!
It's so nice to have you here!
Yes, I can understand exactly how you feel and I think many others will come along who understand too. I don't mean to speak out of turn, but you may have to "dumb down" the medical terms for some of us...like me...to fully understand. None of us here are Dr's and few have had medical training. Most are just simply chronic pain patients and a great number are back pain sufferers. L5-S1 was my first back problem too and where my surgery was done...now I look like a zipper that went bad, but I do not intend to have additional surgery if there is any way possible to avoid it.
I found that surgery did stop the majority of nerve pain going down my legs and into my feet, but caused so many other problems that I am worse off now in many ways than I was before. Of course, I wasn't given a choice in the matter of the surgery because the damage was so severe and it was done on an emergency basis. It was a TLIF about 4 years ago. Now everything else is going wrong and the back seems to be the starting point for it all.
I know you mentioned in one of my threads that you don't recommend xanax for patients, but I also noticed you have GAD...which is no doubt not making things better for you right now with the pain and the worry about what to do when nothing else works. Noone can prepare for that. I know I never expected to stop working at 40 years old, but I did have to and I am blessed that I had worked for so long before that (so I could medically retire and receive SSD). Not everyone is so lucky.
Do you have RFA's or trigger point injections? Almost everyone here has a different response to them, but they help me a great deal. I am not allowed to "play" with my med dosage by reducing it when I don't need as much because of the instructions of my PM, but I think I could have taken my dose down at least by a pill or two a day with no problem after the injections had time to "kick in". Strangely, the trigger point injections (with marcain (sp) only) didn't seem to do much for the first few days, but kind of "kicked in" about a week later and helped release my muscles. They helped almost as much as the RFA (which also works great for me most of the time). Many here do not get any relief from either procedure. I use them, but meds are essential in my quality of life and I would be lost without them.
I hope you will stay with us here and can find the support you need. People often forget that Drs (and PA's) are human too and need support as much as other patients. We won't!
Failed TLIF L5-S1, Miltiple Bulges/Herniations, Scoliosis, Pituatary Disorder, Fibro, Failed Bladder Surgery, Failed Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (now trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendonitis, Adult Onset Flat Feet, & Vision Issues