I went along with my neurologist Dr. Sun’s suggestion to have a second epidural for my ruptured disc the other day. The first had helped quite a bit; it took the pain level down by 50% within a few days. With physical therapy I’ve been feeling better and better as the days pass. Usually there is no pain, but when it kicks in (especially while sitting) I’m reminded that I’m still in recovery mode. I have much traveling to do next week with lots of sitting on about a half dozen flights, so I agreed to have a second epidural. When I met the doctor who performed the epidural – I’ll call him Dr. R – he seemed delighted to know that I wanted to avoid taking a benzodiazepine for the procedure. When I told him that I was working on a documentary about benzodiazepines and their dangers, Dr. R told me that he would welcome speaking about benzodiazepines with me. I was psyched. After the procedure, he even remarked on how well I had done without any medication to quell patient anxiety. On the other hand, the nurses who prepped me seemed to roll their eyes when I said that I consider myself to be allergic to benzodiazepines. One nurse expressed dismay when I said that I know of many people who have problems with them.
I was excited to see Dr. R. on this return visit. I have been meeting more and more doctors who know there is a problem. And I looked forward to connecting with one more doctor who is fed up with big pharma marketing lies and skewed clinical trials, a maverick who is ready to speak out, I hoped. Dr. R. is affiliated with a world-renowned hospital in New York, and is in a position to do something…
Yesterday was the scheduled day for my follow-up procedure with Dr. R. I hadn’t received an email from his office with the information I needed to prep for the procedure. I called his office to double-check on their admissions policy, etc. The woman who took my call started giving me a hard time immediately. As it turned out they had sent the instructions to an incorrect email address. Insert groaning emoji. When I arrived for the appt. at the ascribed hour, I was told I was supposed to talk to the doctor. Okay, where do I go? The receptionist mumbled an uncertainty and sent me in the direction of the pre-op area. They had already moved the appt. forward from 3 to 4:30. I didn’t mind. The doctor finally appeared shortly after 5. Great. Don’t you like to be assured that everything is going to go all right, that you’re in good hands? Instead Dr R. was annoyed with me. It seems as though there had been a miscommunication about follow-up after the initial procedure. Of course this was my fault he told me. That was how he greeted me. Oh, and he also told me that he had no memory of treating me before. Remember that incorrect email address? Hmm. He proceeded to tell me that he didn’t have reliable information about what he was treating, and again blamed me for not connecting with him after the last procedure. Huh? He went on vacation the day after the initial epidural. He was heading off on a spring break vacation, but was supposed to have called me. If he did, I never got the message. Though my wonderful neurologist Dr. Sun checked on me twice. He called me on a Saturday and a Sunday, even though he too was flying off on a spring break getaway. Clearly Dr. R didn’t try too hard to reach me.
Sitting there in a damn hospital gown opened at the back and very much wanting to get this over with, it struck me that the wise thing to do was to ask if we shouldn’t reschedule. Of course he back-tracked and said he was fully prepared to do the epidural. I thought of my neurologists’s encouraging words; he really believes in this guy. I had no major worries, but…Soon enough I was escorted to his theatre. I was feeling some anxiety, and it increased when he had to rethink the needle entry point because it was a little more complicated than the last time. And there was another adjustment when there was a vascular issue he hadn’t anticipated. I asked if something was wrong. Yes, I felt nervous. But I didn’t do anything to impede his ability to do the procedure. When it was over, I expressed my relief that it was done. I didn’t apologize for being nervous but I did say something to the effect that it was not easy. His retort: Because you didn’t take an Ativan before the procedure. His pride in my former courage had morphed into today’s message: You are a weak, bothersome, overreacting patient. Hey look, I’d love to feel safe about taking a benzodiazepine for just this purpose. Dr. Ashton believes that many who fall into my category (straightforward benzodiazepine discontinuation) can take a benzodiazepine for just this purpose once the CNS has healed from benzo injury. But I’m not there yet. I might never be. And I want doctors, nurses, and healthcare workers to understand the full scope of the dangers involved. Slowly but surely benzo awareness is happening. Though my hopes for this possible bright star Dr R have been dashed.
But my neurologist — he’s a believer. And that is where I will go for my follow-up.
Did I mention that the physician’s assistant on duty offered me Ativan within a minute of snapping a warning bracelet for my benzodiazepine allergy on my wrist? Yeah, she did that. Yes, that happened.
Keep the faith.
And please stay in touch.