MVD Success Story

Hi all. This community was really helpful to me, so I thought I'd share my MVD success story. It's long, but the short version is: MVD surgery changed my life and I'm so glad I did it. It may not be right for everyone, but it saved me from so much agony.

My journey to surgery:

• It started with stabbing pain near my ear. I thought it was an ear infection, but my ENT told me to see a neurologist (from what I hear, I got lucky being pointed in the right direction so quickly).
• Saw a neurologist — they diagnosed it as neuralgia (though wrongly said it was glossopharyngeal and maybe also trigeminal, despite me explaining the glosso pathway didn’t align with my symptoms — don’t be afraid to advocate for yourself!).
• I had a brain MRA and MRI. The radiologist said nothing was causing the neuralgia, and the neurologist said to take meds and maybe it would go away someday or maybe I'd just be on the meds forever.
• They put me on oxcarbazepine. It helped a lot but not fully, so I’d go back every few months to increase the dose. The pain improved but the cognitive side effects were intense for me (stutter, memory problems, sadness at first) — still better than the pain though.
• I spent over a year going to different specialists to see if anything else could be causing it (celiac, B12 deficiency, you name it). No one had an answer.
• After about a year I ended up injuring the back tooth on my bad side and needed a root canal. Unfortunately the tooth wouldn't go numb so they had to drill into it 'alive' and shoot the nerve directly with novocaine. This reactivated the pain to the point where I was eating mostly soft foods and considering additional meds.
• Not too long after I finally got a second opinion on the MRI itself from a neurosurgeon — and voilà: an artery and a vein were compressing my trigeminal nerve.
• I asked why the radiologist didn’t see it and the surgeon said radiologists are trained to look for major deformities or indentations in the nerve, not subtle compression like mine, which can still cause tremendous pain and long-term nerve damage.
• I got another MRI and a second opinion from a different surgeon — he agreed.
• The surgeon told me he could fix it with microvascular decompression (MVD) surgery.

The surgery:

• I was 35 at the time of surgery, and it was about 1.5 years after the original onset.
• The surgery was super successful. Surgeon cauterized the vein and moved the artery out of the way with a small Teflon cushion.
• The first couple of weeks of recovery were the hardest, but I felt noticeably better after about a month. Thankfully I had 3 months off work to fully recover.
• Around 12 weeks post-op, I started tapering off oxcarbazepine because I was desperate to be done with it.
• I’m now almost two years post-surgery (it took me some time to process everything mentally, otherwise I would have written this earlier), and I’d say it fixed things about 99%. I still get occasional “hellos” from the nerve, but they’ve decreased over time and they’re NOTHING like before.

Anyway, I just wanted to share because this community helped me feel less scared at a time when I really needed it. Thank you to everyone who has shared their stories — I’m thinking of all of you still in the trenches of this terrible condition.