u/ratatatat600

After what has felt like forever of dealing with pain, but has somehow only been a year, I scheduled my MVD today at a high-volume TN center to address my mixed TN (I'm aware of the lower success rates for mixed or atypical cases). Now, I'm majorly in planning mode. I'm honestly feeling a little excited? Just relieved to have a plan that *might* work, honestly.

For those of you who have had an MVD, I have some questions:

• How long were you in the hospital? Did you have any complications?
• How out of it were you that first week?
• How long did it take until you felt comfortable not having a caretaker stay with you full-time?
• What was most helpful to you during recovery? I'm going to get a wedge pillow, travel pillow, body pillow, and download some audiobooks so far-- and will set up a meal train
• How long did the nausea last?
• What was the part(s) of recovery that you underestimated?
• Could you bend down (to change cat litter, for example)?

Open to any and all feedback/advice-- thanks in advance!

• 36yo atypical TN person (pain comes and goes, sometimes very quickly, sometimes it lasts a while. It’s achey and boring (like ice pick-y) with two modes: a background ache mode and a sharper pain flare mode. Happens most days and now spreads from my face to also include the side and back of my head (maybe bc I tense up when it’s happening)). Some days/weeks are better than others but idk why. Doesn’t hurt to touch/eat/etc. most of the time.
• Slight contact between a vein and my trigeminal nerve at the root entry zone, as confirmed by an MRI
• Have tried headache/migraine diet, OTC pain meds, Gabapentin, Zonisamide, peripheral nerve blocks (failed), and CBT for pain and nothing has helped (am not able to try carbamazepine due to interactions with current meds)
• Had an appt with a neurosurgeon last week who basically said gamma ray is out, rhizotomy is out, and I’m out of options with the exception of an MVD, which she says she doesn’t even know if that will work bc of my atypical presentation. Pain management said we could try pulsed ablation (which he estimates has a <50% chance of working for me) and I’ve also read about Botox (which I would probably guess has the same estimate success rate), but honestly, at this point, I would barely care if they cut my head all the way off and sewed it on backwards if it would mean this would all end.

My instinct/impulse is to get the MVD and just hope for the best (and for an end to this) but have been reading through this group and have found a lot of wisdom and was hoping I could draw on a bit. Have any of you had success with MVD with similar pain profile?