Sunday, June 3, 2012

never again (nerve block saga, part two)

ok, so first on Tues May 29th I got a call from the hospital reminding me of my appt the next day for a sphenopalatine ganglion block. No, remember that's the one we cancelled?!?! Yeah. Seriously. It was CANCELLED!!! Arrrgggghhhh.
On Wed May 30th I went to the Pain Management clinic armed with my list of questions and with what I hoped was my biggest dose of strength and determinism. I wasn't going to leave. I would sit there all day. I would stare at her with my stare of death. I would chain myself to the chair. Oh I don't know. But I needed my answers.
She tried to show me a very poor illustration of the trigeminal nerve from a very old textbook that wasn't at all helpful. And I showed her the illustration that I had from my Striking Back book (the trigeminal neuralgia bible) and she agreed my book had a better picture. I had also found more informative graphics online, by the way. Ugh. And she really didn't know anything else. But she copied down my list of questions and called the Imaging Center to reach the Dr who was doing my procedure. No one answered the phone. She offered to walk across the parking lot to their office and see who was there and get some answers and I sat there and waited, feeling like maybe we'd finally get somewhere! But no. The Dr who was doing my procedure works all along the state, was not answering his cell phone (probably doing procedures) and no one else in the office was experienced with the procedure. But she left him a voice mail and promised she would call me when she heard back. She put her personal phone in her front pocket along with my list of questions and apologized for the mess and promised me to get my answers.
What was I to do?
I couldn't really sit in her office all day. It was 1:00. The Dr might not return her call until after office hours. My kids were at a babysitters. What was I to do?!?
So I left, feeling discouraged and defeated. Still no answers. Another wasted copay. Ugh.
Later that day I got a personal call from the Interventional Radiologist Dr who would be doing my procedure, Dr B. I had explained to the PA that one of my questions was how much experience he had in doing this particular nerve block (esp since no one seemed to have any idea at all about the other one they had proposed and I have a feeling that's why they changed it). So the first thing he told me was that he has lots of experience doing injected nerve blocks and doing CT guided nerve blocks, but as far as this particular type, doing a block into the trigeminal nerve root, he had only done one before in his career. One. Oh. But he said it went without complication and he felt confident in his ability to do it. Then he proceeded to answer my other questions. It wasn't really the experience I was hoping for, but it's just not something that is done very often. Crazy. But I was so nervous.
The trigeminal nerve root comes out in the middle of the base of the skull basically, so they either go through the cheek and straight through your face into your skull, or through your jaw into your head, and then kind of in the spot where 2 lines would intersect if you drew them from the front of your ear across to the other side and from your nose to the back of your head. That spot in the middle of your head? That's where the needle was headed. It was possible that it could "reset" the nerve and interrupt the pain cycle and cause relief for good. It was possible it would do nothing. It was possible that it could slip and mess up and cause permanent numbness. It could cause relief for a few days, a few weeks, or a few months.
I was supposed to be given conscious IV sedation, like what they give you for a colonoscopy (versed and fentanyl), so I would be awake and able to interact, but out of it and not really care. So I was told. I was so anxious, but I just kept thinking that once I was given the sedation I would be ok. I thought I would be ok. And I was looking forward to at least that amount of relief from my usual pain. At least I would have some sedation at last! ha. ha. He would be injecting 2 types of numbing agents that would wear off pretty quickly (but could last up to 8 hrs) and a steroid that would take up to a week to take effect.
He said this would help with diagnosing my condition more precisely. But it might not address all of my pain. It might indicate that I could be a candidate for surgery, if this was successful. He said that if I hadn't already seen so many other Drs and tried medications and things, then he might not recommend it, but given my history, this was the logical next step.
And so we decided to proceed.


Anonymous said...

What happened next? I have Atypical TN too and my pain dr wanted me to try a series of 3 occipital blocks and 3 trigeminal blocks. He had a patient it worked wonders for. I did one occipital block. Not good.

Linda said...

Sounds scary! I hope everything goes well!

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