Sunday, June 3, 2012

never again (nerve block saga, part one)

For those of you who don't have the pleasure of following me on Facebook or Twitter and have missed the Saga of the Nerve Block, I'm going to try to summarize most of it and tell the remainder of the tale for you all.
I'm not sure if I'm up for it, actually. But I am hopeful that by writing it out, I can kind of recover from this awful experience. It definitely ranks up as one of the most awful experiences of my entire life and one that I hope to never repeat. I will never again willingly undergo this nerve block procedure, that much I know for sure. I've been shaking and dizzy and feeling terrible for the 2 days since; it's too early to tell yet if it was successful in terms of pain relief.
But anyway, here's the story:
So, Tues May 15 I saw the Pain Management Specialist. They decided to start out by trying a nerve block procedure. The PA, Dr and Intervention Dr consulted and decided a sphenopalatine ganglion nerve block would be the best place to start, I asked all the questions off the top of my head, I scheduled the procedure with the receptionist as I left (to be performed at the Imaging Center that they worked with) and I left thinking I would be having it done on Thurs! 2 days away! Hurray! Relief might be in sight! Unbelievable!
Got a call later that day that no, actually it had to be done with CT guidance which the Imaging Center does not have so it would have to be done at the hospital so the hospital would be calling me to schedule. Ok. This made me slightly nervous, as did the prospect of having a needle injected up the soft palate in the back of my throat. Ouch.
{ Side note: Wed May 16, I had an appt with a neurosurgeon who only agreed to see me after he looked over my MRI and notes and thought there might be something he could do for me. So of course I was a little nervous, not sure that I was ready to pursue any surgical options, but thought that I would like to know what those options were, in any case. I had told them all my symptoms and everything already, of course. Anyway. Got there. Paid $160 upfront. Met with the surgeon. He listened to all my symptoms. Very bluntly told me the only thing he could do for me would be to sever the nerve and leave half my face numb which he wouldn't do for me at this point even if I begged him. So basically there was nothing he would do for me. He said maybe after I've suffered with this for 15-20 yrs with no relief, then maybe we'd be at a point to consider it. And as long as I'm eating and sleeping, then I'm doing better than a lot of his facial pain patients (in a nutshell). Yeah. Thanks a lot. I sort of cried all the way home. It had just been such a complete waste of my time and money and stress and effort. And I was tired and I was hurting and I had worn myself thin with all of the emotion of my mom getting remarried and having all my family in town the previous weekend, then these 2 Dr appts back to back. It had been too much. Anyway.)
Thurs. May 17 I had a breakdown and I called neighbors to take my kids for the entire day.
Fri May 18 I called around and tried to figure out my nerve block order. I called the Imaging Center who didn't have the order. The hospital who didn't have the order. The pain management clinic to get the order. I was put on hold, transfered, etc etc something like 11 times before I finally got it scheduled it with the hospital for May 30th but then when I asked about getting sedated (since that would need to be part of the scheduling) no one knew what to schedule for. No one had ever heard of the procedure. Not even the specialists at the hospital. They were "looking it up." I was starting to freak out. And I started having a lot more questions I wanted to have answered. The hospital was calling the Imaging Center to figure out what I was having done and they were calling the Dr who worked with them but was not always there at the Center and I felt like we were playing neverending phone tag of the most frustrating kind ever.
The following week May 21-May 25 - I don't even know all of the dates or the sequence of events exactly. But at some point, the Drs all conferred and decided NOT to do the sphenopalatine ganglion nerve block but to do a trigeminal nerve block instead (one of my original questions had been why we weren't targeting the trigeminal nerve original anyhow since that's where my pain is originating, but anyway . . .). I got this message from the Pain Management PA on my answering machine just saying that this would be "easier." I guess I assumed this meant it wouldn't require the mess of needing the CT scan and sedation and needing to be performed at the hospital. I'm not sure why I thought that. All of the phone calls had become very confusing. Who knows what I thought. But I did call back and talk to her and had some of my questions answered. And somehow through the course of the week, I called the hospital and cancelled the appt for the nerve block and called the Imaging Center to schedule the other nerve block there instead for Tues May 29th. Phew! I thought, done at last! It's scheduled. Again. Yay.
Got a phone call from pre-registration at the hospital on Thurs and I said, no, I cancelled that procedure, I'm having a different one done now at the Imaging Center. ok. Taken care of.
I was still trying to reach the actual Intervention Dr, however and get my questions answered about the procedure, including, but not limited to, some simple things like, what are you injecting into my face and where exactly.
On Fri May 25 (a day when I had specifically been told that he would be at the office and I should call then to get my questions answered), I was put on hold for a long time, told there "had been some confusion" and transferred unknowingly back over to the pain management clinic where I was informed that the trigeminal nerve block could NOT, in fact, be done at the Imaging Center, but also needed to be done at the Hospital under CT guidance. At which point, I lost it again, explaining that I JUST CANCELLED THE APPT AT THE HOSPITAL THE DAY BEFORE!!!! They tried to calm me down. She offered to get it scheduled for me. And she said I could come in and get my questions answered the next week. Holy crap.
So it was scheduled again. For the 4th time, mind you. For June 1. At the hospital. But I still didn't know what kind of sedation they would give me, where exactly the injection would be going in my face (although some google research had given me some pretty good ideas), or exactly what medications would be used (the first Dr had said "usually lidocaine and sometimes a steroid" - um, NOT HELPFUL!).
Keep in mind also that, well, I tend to have a sort of high anxiety level (aw shucks, yes I have a diagnosed anxiety disorder, along with depression. So there you go.) And all this chronic pain, and stress and crazy Dr mess was just not helping any of it!!! Seriously. People. This kind of stuff is not good for me.
But I had the appt to go talk to the PA at the Pain Management place for Wed May 30th and I had determined that I would not leave until I had all my questions answered to my satisfaction about the trigeminal nerve block. Surely 2 days before the procedure they would have to find a way to get the answers for me, right?
Oh, if it had only been that simple . . .

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