I posted this question in the general posts and just received a few responses, which really helped, and realized I probably should have asked this question to this group. Have others experienced bad headaches, dizziness, and nausea post MVD surgery? I’m three weeks post op and still experiencing these things. I’ve also been getting TN pain with my nerve firing all over the place, even on the side of my face that was never affected before surgery. I’m wondering if this a normal part of the nerves regenerating and if anyone has also experienced this post surgery. My nerve was pretty damaged so it will take time to heal. Any feedback would be greatly appreciated, thanks!
Yes, your brain is still swollen. As the swelling goes down they will diminish. I was taken off my brain steroids to soon and ended up with 1st day migraine 2nd day vomiting for 13 hours straight 3rd-5th day migraine and vomit, called and got back on steroid and things settled down. I had lots of tingling and creepy crawling with some shooting pain, but was so much better than I had been by far when I woke up. The longer you have had TN the more damage it does. Think of rubber when it gets a crease in it, it never really springs back. Same with the nerve that has been rubbed raw the damage is always there, but the compression is gone with MVD. Then when it gets fixed the scar tissue comes. Scar tissue does not conduct electricity well nor do the creases in the nerve. Nerves heal fast something like 3mm per day. I found as the numbness wore off the pain increased for a while till it healed. I used ice packs on my head and it really helps with the swelling and pain.
I am 6 months post op and I still see a Cranial Physical Therapist who is helping breakup adhesions around my scar and scalp. This is helping. Healing is slow, take it easy one day at a time. Even though I did not get 100% relief from the surgery I got 50% on a bad day and 70% on a good day, which I am happy with, because I can not take the meds. I have had this for 20years with ON also, my surgeon told me it would help but would not fix all. Now I will decide if I want to do it for the other side and what to do for the ON.
3 weeks is not a long time, especially with a badly damaged nerve. I was dizzy and nauseated for at least 2 months after MVD. I also had really bad double-vision that made it impossible to drive for awhile. 3 years later I still have the nausea and occasional vomiting. I've brought it up to my GP doc, but she seemed to think I have a reflux problem (I don't). I have the kind of nausea I feel from motion sickness. I believe it is caused by my vision problems. My right eye is weaker and there is a grayish haze over that eye... hard to explain. Like Tree (love your name), I can no longer take the meds. I've had TN for about 9 years and I am working on acceptance. I am lucky my pain isn't 24/7 like so many here. I have daily attacks, but I figure I can endure pain if I know it will stop. Usually 5-20 minutes of sharp, stabbing, burning but I know I'm not really dying. I've decided this is better than the dopey, heavy feel I get from the meds, which stopped helping anyway. Take care and don't rush it! I hope you make a full recovery so that you can have your life back.
I had very bad nausea and dizziness after my MVD. The Drs gave me nausea medicine and one of those prescription seasickness patches. That helped a lot. The headache lasted more than 3 weeks too. Remember that everything is healing in there. I keep hearing up to a year for the nerve(s) to recover. I am 7 months post-op. I suggest taking it easy if you're still not feeling well. Some people take longer to recover than others. I was one of those that took a long time. Someone posted on this site that they had surgery on Fri and were home Saturday. They took one Tylenol per day while in the hospital and they were fine. I was on a dilaudid drip. LOL We're all different.
Thank you Tree and Suzanne for your replies! I really appreciate you taking the time to post your experiences. It’s very helpful to me right now. Tree re: my TN pain it’s too soon to know if it’s gone yet as I haven’t dared to start getting off the Gabapentin until the other head pain gets better. I have been having a lot of crazy electric shocks and pain since the surgery in places I never had them before, but am hoping this will pass and is just part of the nerves regenerating. Here’s hoping!! I have found cold packs really helpful in calming down the nerve activity. Wishing you both the very best and thanks again for sharing!
Thank you Ihold! You must have posted when I was replying to the first two posts, sorry! That’s good to know you’ve experienced similar side effects. My Neurosurgeon told me some people are more sensitive to the effects of this surgery than others. I’ve always become easily motion sick so I’m not too surprised this is happening. I too was on a dilaudid drip! Wicked pain post surgery but I think living with TN makes us all pretty strong. Thank you for taking the time to share your experience. I’ll ask my Dr. about the motion sickness patches, thanks! Are you pain free now? All the best to you!
I forgot to comment on this part; I do get crazy electric tingles in spots I never had them before. I also have involuntary muscle movements. I still get them, just had a few. I will be just sitting there and part of my lip will jump. They are not painful so I am happy for the trade off. Mine are at the end of the nerve branches, close to my nose, lips and chin. Sometimes feels like an electric tickle or crawling under skin. Strange but I am getting used to them.
Tree
MH said:
Thank you Tree and Suzanne for your replies! I really appreciate you taking the time to post your experiences. It's very helpful to me right now. Tree re: my TN pain it's too soon to know if it's gone yet as I haven't dared to start getting off the Gabapentin until the other head pain gets better. I have been having a lot of crazy electric shocks and pain since the surgery in places I never had them before, but am hoping this will pass and is just part of the nerves regenerating. Here's hoping!! I have found cold packs really helpful in calming down the nerve activity. Wishing you both the very best and thanks again for sharing!
Thanks Tree, good to know I’m not alone in getting these new sensations. It was really bad for a few days there, much worse than my normal TN pain, but it’s calmed down today. Fingers crossed it’s just the nerves regenerating and not the new norm. Thanks again!
I am 3 weeks post op from mvd and I am still having the constant boring intense pain with severe tinnitus. I am praying that I have the courage to keep on going. Been suffering 8 years with left ear pain and tinnitus. I also now have a fullness in my ear and I am almost completely deaf in that ear since the surgery. Does anyone else have this fullness/deafness in the ear from the surgery and will it eventually go away?
My wife had the same surgery for the left side almost 2 years ago and now she has to deal with uncontrollable vomiting and intense headaches every single day. We recently found out that her vestibular nerve was damaged during the surgery and we are filling suit against her surgeon for 30 million dollars. It wasn’t until we found a neurotologist who was able to pinpoint her problems. She has had 4 brain surgeries to correct this due to fluid leaks on the brain and cutting nerves in the back of the brain to get rid of the intense pain. And now she will have a 5th brain procedure to redo the microvascular decompression surgery that was done incorrectly. I wish you well and hope that you don’t end up like my wife.