I’m post MVD surgery nearly three weeks and still having severe headaches, although nothing near the TN head pain I had before, with vertigo, ear fullness, and nausea. It seems worse in the a.m. As soon as I wake up it hits me and seems to improve a bit with pain killers and walking around. It’s much worse late eve and feels like I have swelling around the incision. I had these headaches early on post op and taking steroids really helped but you can’t be on them long term. I had TN pain and electric shocks last night too for the first time since the surgery which was difficult. My nerve, however, was so badly damaged it had a dent in it and could take nearly a year to heal. I understand that I can still have some TN pain during this time and may still need to continue my Gabepentin throughout this year. Three weeks in I thought I’d be feeling so much better than I am. I’d really appreciate any feedback related to the early days post MVD surgery to put my mind at ease that this is just part of the healing process and it will eventually pass. Thanks!
Hi MH,
I had headaches and nausea for about 21/2 weeks post op, no vertigo. I had the crazy ear fullness for 3 weeks then it disappeared, many have had it longer.
All I took post op aside from my TN meds, was either Advil or Tylenol 3s and an anti nausea medication the hospital rx’d me at discharge from the hospital.
I stopped taking any pain meds at the end if my 3 rd week post op. nausea was better too.
Dr. K, my neurosurgeon, has yet to call me, his assistant called last week, and we’ve been playing phone tag, this call is my 8 week post op check and my first since I was in the hospital.
I’ve seen my GP twice in the meantime and will see my neurologist in 2 weeks.
I was given a schedule to wean off my meds ( I was on 3) but I think Dr.K forgot that I still have TN on the right so I did wean off my other two meds and got my Tegretol down to 800mg from 1600mg. This was week 3 and all of a sudden I experienced TN pain and shocks on my mvd side. So discouraging, I couldn’t talk, eat and barely drink for 3 days. I then added 2 pills back of the Tegretol to bring me up to 1200mg and I have been pain free since.
Despite that speed bump I consider my mvd a success as I am down two meds and NO pain. Whereas before mvd I was on 3 meds at high doses no coverage of pain, my pain was between 6-10 /10 everyday all day. No driving and home bound . It was horrid.
I get a pressure in my head when I’ve done too much, ( even just a grocery shop or walk around the block can cause this pressure. My GP said that’s my warning signal that I’ve done too much, I’m very low energy, and still at 8 weeks post op trying to find that balance.
Listen to your body/intuition, you yourself know what’s right/ not right.
I would go to ER if you are concerned, or if you can get in with your GP or Neuro ASAP see them, but ER at Dr. H’s hospital would be best.
I hope you start to feel better soon. Thinking of you.
(( hugs )) Mimi xx
Thank you so much for your thoughtful reply, I really appreciate you taking the time to get back to me. It’s really helpful to read about your experience. It’s a good reminder to not push myself too hard right now and in the near future. I’m happy to hear you now have no pain, Fantastic! Thank you again and wishing you the very best.
It's just me - but I am a pain in the ass to my doctors --- I call,, show up - email -- till I get the answers I need..... Post MVD is a VERRRRRY scary time to be left on your own...... stomp around some more if I were you..... but remain calm LOL