Hello everyone! I had MVD for TN1 and ATN on July 31st by Dr. Lim at Johns Hopkins. I came home on Aug 2nd. Everything went well, apparently had a very big vessel pressing on my nerve which was "taken care of". For the most part, I don't have any TN pain. What I do have feels like a very, very tight ponytail, which I guess is from the skin pulling. I was also told I'd be getting TN-type pains all over my head, which is the nerves healing. He was right! BUT no actual TN pain.
My question is: When I stand for long periods of time or walk up steps, I get the most excrutiating headache, worse than any migraine I've ever had. It goes away about 5-10 minutes later after I sit down and use an ice pack. I take 10 mg of OxyCodone every 3 hours and 2 Extra Strength Tylenol every 6 (as directed), also 2400 mg of gabapentin throughout the day. Does anyone else experience these headaches? I am being told to walk around but am so afraid to even stand up!
Hi Teresa please know that I had the exact same thing when I had my MVD in 2000. The headaches were severe the first few weeks after surgery and slowly got better and went away. With mine my face got bright red and it was different than and more severe than any headache I had ever had. Please just do as your doctor tells you and rest. Don't over do it because that seems to make it worse. Let people take care of you.
I hope you recover quickly and if you need someone to talk to please contact me.
Hope you are feeling better. I had MVD 7 months ago. I had a CSF (cranio spinal fluid) leak from the site of the surgery which caused extreme head pain/pressure on the top of the head when I went from sitting to standing. After that got fixed, I had problems if I exerted myself too much. Take care.