13 days post MVD update
Before I had MVD, I read every post I could find on Reddit by people who had the surgery, so I figured I’d share my experience and answer questions from anyone who might be considering having it done.
I (38f) was diagnosed with left-sided trigeminal neuralgia last April. There wasn’t an obvious compression on my most recent MRI, but my symptoms were classic and I responded to carbamazepine. Over the course of the year, I had to increase my dose several times, and I ended up in a flare that lasted 7 weeks, so I saw a neurosurgeon. He recommended MVD, and surgery was scheduled for two weeks later. In the meantime, I had another MRI with smaller (1mm) images. That MRI showed two compressions on my left trigeminal nerve (and one on the right, but I’m trying to ignore that!).
My surgery was on April 10. The day before, I went to my hairstylist and she shaved the back of my head for me. The neurosurgery nurse practitioner said that was a smart idea, since the surgeons aren’t exactly worried about aesthetics in the OR. My surgery took close to 6 hours, and I was very drowsy in recovery - I barely remember being in there. From recovery, I was transported to the neuro stepdown unit and stayed there for one night, a total of about 37 hours in the hospital. I expected to go to the ICU and was so thrilled to avoid it. However, I had a terrible night in the hospital. I was in pain, nauseous, dizzy, uncomfortable… I had a roommate, and a very confused next door neighbor, so that was just awful. The next morning, my urinary catheter was removed and I started to walk, which helped my comfort level so much. The headache I had was terrible, and the resident that rounded on me said it was due to losing a lot of spinal fluid in surgery. The surgical pain was moderate, but I had so much numbness that it wasn’t horrible. The headache was much worse, and lasted days. I took advantage of as much pain and nausea medication as I could get while in the hospital.
The ride home from the hospital was awful, but fortunately we only live 20 minutes away, so I survived. Once I was set up in bed, I slept 15 hours with only a few breaks to go to the bathroom. Sitting up made my headache worse, so I stayed horizontal as much as possible. I spent a lot of time in bed for the first week, and my surgical pain actually increased during that time as my numbness wore off. They also only sent me home with 10 (5mg!) pain pills which was absurd, so I called the nurse practitioner and she prescribed 24 more. Thank god.
Over the past week (week 2), I’ve steadily improved. I’ve been moving around more, taking walks, and going on brief errands out of my house. I am still taking tylenol around the clock, but I’m off the narcotics and nausea meds. I have decreased my carbamazepine dose by 50%, with plans to continue tapering. I cautiously believe my trigeminal neuralgia is gone, but I *have* had nerve pain since my surgery. I don’t think it’s trigeminal neuralgia pain though, I think it’s nerve pain from the surgery, and that it will subside.
My incision is still pretty uncomfortable, but my stitches come out in a few days and I think that will help tremendously. I also still have a lot of numbness - the back of my head, the lower half of the left side of my face, and the left side of my lips, teeth, and tongue are still numb. It’s annoying and my fingers are crossed that it will dissipate soon.
Otherwise I feel good and am definitely on the mend and feeling hopeful that I’m moving toward a life with no trigeminal neuralgia!
Things that helped me:
-Bringing my own pillow and blanket to the hospital. Also comfy pajamas for when I was allowed to change out of my gown.
-On Reddit, someone said to buy several extra pillowcases so that you can change them out frequently. I did that, and am so glad I did! Highly recommend.
-STRAWS! I did not want to bend my head a ton, so bendy straws have been a life saver
-Preparing and freezing meals before surgery for ease of eating during recovery
-Chobani protein yogurt drinks - very hard to get protein when you’re nauseous, but protein is so important for recovery
-Gatorade… lots of Gatorade
-A cart next to my bed with everything I need… meds, water, chapstick, lotion, phone charger, glasses/contacts, tissues, etc.
Let me know if you have questions! Happy to try and help.