@joy75 - I will continue this so you feel encouraged to get back in the driver seat. My neurosurgeon - the best at that time - grew into being a jaded... um, add your own last word. When he said there was nothing more for him to do I replied: "Okay, I'll go home and take the opioids then." (I was fine with that). I had done EVERYTHING they asked. That was when he replied: "oh, no, no, no... let me refer you to the orthopedic spine surgeon here..." really?! All of a sudden there's another person who may help me?! I didn't want to go. I figured I was at the top after 18 years of surgeons (had two hips replaced), 28 years of P.T., referrals, EMT nerve tests, MRI's EVERY YEAR, outpatient, pain mgt for 20 years, blah, blah.... An ortho spine surgeon is lower on the rung of practice time (5 years for ortho instead of 8 for neuro). What I believe was the core issue was HE came from a time where there were BAD lumbar surgeries. Also, in his mind, you needed to be incontinent and have foot drop. He wanted those indications. (I was kinda having loose bowels and believe now that the nerves were indeed creating some of that problem along with the IBS). The nerves DON'T have exact paths and they can stimulate other areas.
In the meantime, I was getting other second opinions. My insurance company allowed for it. PLUS, if surgery is involved, they will cover some additional referrals - especially if this happens over time and you are in a new year. (The 4 opinions happened over 2 to 3 years). By then, my pain STOPPED. Do you get that electric shock feeling when you reach for something? Well, it stopped because the nerves were crushed to death and the spine bones grafted together. So my prince charming who did a simple xray, walked in after I answered some stupid guinea pig questions for his student fellows and he said "you need to do surgery NOW." I said "Fine, do it." I just knew he was my man! I've been with him for my two cervical spine surgeries, too. I'll be back for another lumbar fusion, we are watching.
When I woke up from surgery I was thrilled. The surgical pain is yucky but the lumbar spine pain was gone! I could turn over in bed immediately and the 2 ton gorilla was gone! Are you of Medicare age? You don't need a referral. You can go anywhere. You need to be with a spine surgeon. In the meantime, go get some MFR treatments that will ease your misery. Its like a painful massage but they realign things so you get relief. Get SEVERAL in succession. Same with acupuncture, get some of those too. Get a pain managment doctor onboard to get some treatments and a diagnosis. I had one REALLY GREAT guy who said "oh, I can puncture the fluid filled sac sitting on your spine (from the MRI read) wanna do that?" and I said YES. I can't remember WHY I had to pay for it... (this was 2015) but I did. Then I went back and asked insurance for reimbursement. They wouldn't. So I took it to arbitration. I WON. Then they freaking wouldn't Pay! Can you believe that... a $500 bill and they spent $5000 arguing about it. So I threatened to go back to arbitration and I rec'd a check in 2 days. Really crappy, huh? I TRUST that the right thing WON'T happen without advocating for myself. I want to live my best life and we are severely understaffed in the medical arena. Politics destroys coverage and our entitlements. IF you are of medicare age - make SURE you know what you are entitled to!
Oh Joy - I just saw you are 51 and in Canada. I don't know the policies there but I know it is slow go. Here I tell the doctors "you can't leave me suffering" - suffering being the key word. I suggest you get into a swimming pool for sure and walk. Rest and put your legs up and stretch. I lay on the rug pull my knees up and turn them to one side of the floor for a while and then the other for a while. That helps. I would suggest you DON'T PAY for "help" (chiro/P.T. or the rest). Save your money and go to a GOOD orthopedic spine surgeon for a diagnosis. That is what you need. Where you need to be. DO use heat/ice in the meantime and don't hurt yourself and waste time trying to "heal" (which you aren't going to do from your description). You DO need to be strong going into surgery (ergo, walking and swimming). Also, see if facet joint Radio Frequency Ablation is offered and some cortisone periodically. Think long term.... you'll get there. See if botox makes sense (it did for me).