The good news is that it's due to an artery sitting on the nerve. We discovered the issue after I got switched to a new migraine medication (Vyepti infusions every 90 days - it's been a godsend).

Surgery (microvascular decompression) is scheduled on the 21st. My surgeon is beloved by my sisters (ICU NPs here), and by almost every other provider I've mentioned his name to as well.

Anyone here have experience, either as a patient or a provider? I'm just curious what I'm getting myself into here.

This message has been edited. Last edited by: vulrath,

My cousin went through this. It’s known as “The Suicide”, because some people can’t endure the excruciating pain. It afflicts women more often than men. Sometimes a way to tell that a man has it is due to half of his face is unshaven, the act of dragging a razor across the face can aggravate it. Many times my cousin went to the dentist, sure that she had a cavity, she said he would do a checkup, smile and say say “No, your teeth are fine.” She said there were times that she was reduced to lying on the floor, curled up in a ball crying. She went through a number of procedures with limited success, she finally had a operation in which they opened a hole in her skull just behind ear and cauterized a blood vessel that wrapped around some nerves. I’m sorry you’re having to endure this and I hope the procedure you’re having on the 21st deals successfully with the problem.

Thanks for sharing your/her experience. I think the procedure I'm scheduled for is pretty much the same thing, only they plan on snaking a piece of Teflon in and leaving it between the artery and nerve. I'm expected to be in the hospital for 2-3 days assuming everything goes according to plan.

Being a chronic pain patient, I do have a few concerns related to post op medication, but a lot of that is mitigated by me being impatient (which I'm admittedly (ba-dum-tiss) not used to) for the first couple of days. Last time I was held after surgery for more than a few hours I was 3 and spent a week in the hospital after getting my tonsils out because "screw that, it hurts" and autism.

I would be lying if I said I wasn't scared shitless, though...

I get quarterly vyepti infusions as well. It's been great. It's not a cure. But rather you get a very significant reduction in the number of migraine attacks. I've gone several months with no migraines at all. Don't get discouraged if you get a migraine that lasts a few days. It will go away and you can usually look forward to a nice stretch with no migraines at all.

Fed, it's been a godsend. The absolute relief of the Vyepti is how I figured out what is going on.

My experience so far is that I got 2 months of no migraines, then hell on earth for 2-4 weeks. First day after my second infusion I was almost back to normal. I've had to get a steroid shot to get my TN under control so I could make it to my surgery day.

What a blessing.
The hardest part about a migraine is that typically people can’t see that there’s something wrong and you feel ashamed (or at least I did) for being “weak” over a “headache” that could take you down for days.
I’m so glad you found a solution that works and allows you to be able to think effectively and live your best life!

quote:

The hardest part about a migraine is that typically people can’t see that there’s something wrong and you feel ashamed (or at least I did) for being “weak” over a “headache” that could take you down for days.

Having suffered from migs for some 35 years, I know the feeling.

Is this something that could also be caused by an auto accident where you hit your head?

^Are you asking me or Vulrath?

Glad to hear that things are turning around for you and pray for your future surgery.

quote:

Originally posted by BigCity:
Is this something that could also be caused by an auto accident where you hit your head?

Mine (vascular root cause), not likely. The artery has been there all my life. But trigeminal neuralgia in general? It's absolutely possible.

@irreverent, the first time I had a multi-day migraine I felt like such a wimp. I was ashamed of myself, having to go to the ER on day 8.

Well, surgery was successful. Doc found 3 nerves coiled around an artery, 2 of which (I was told it was cranial nerves 5 and 7) were pretty thoroughly plastered on the wall of the artery. We went from "you're a pretty atypical case and we're not sure this is going to work" to "holy shit no wonder you're in constant pain, this was the only real fix."

I'm still imprisoned in the ICU. Last night was pretty rough but I'm slowly getting better
I'm in pain but it's a significantly different kind of pain. There's real hope for me getting off the pain pills; this is the last thing in my way.

Now it's up to me.

quote:

Originally posted by vulrath:
Well, surgery was successful. Doc found 3 nerves coiled around an artery, 2 of which (I was told it was cranial nerves 5 and 7) were pretty thoroughly plastered on the wall of the artery. We went from "you're a pretty atypical case and we're not sure this is going to work" to "holy shit no wonder you're in constant pain, this was the only real fix."

I'm still imprisoned in the ICU. Last night was pretty rough but I'm slowly getting better
I'm in pain but it's a significantly different kind of pain. There's real hope for me getting off the pain pills; this is the last thing in my way.

Now it's up to me.

Outstanding! I hope you have a full recovery.

I’m so glad. Please keep us posted. My wife suffers from migraines.

Excellent news! Hopefully you've completely resolved the 'skullwrath' and can experience a return to the more pleasant existence that was 'vulrath'!

Trigeminal neuralgia can produce terrible pain!

So pleased the surgeon took care of it!

I came home yesterday. They were going to send me to a stepdown unit from the ICU and I took sister's advice and came home instead, with my neurosurgeon's blessing.

Pain has been up and down, but I can control it here. The only real advantage to staying in the hospital would be that they have access to IV drugs for breakthrough pain control there.

It's funny how my surgeon and his fellows went from "I'm still hesitant to say this will completely resolve your issues" in pre-op to "holy shit no wonder you're in constant pain" in recovery.

I've got 2 weeks before I'm allowed to drive again and I get my stitches out, and then I see him again another 4 weeks after that. I pray this works and I get complete relief, but I can confidently say it's already better compared to when I started Wednesday morning in some regards. So that's good news for me, and bodes well for the future.