Hi everyone ~ quick question … I had my MVD surgery 12 days ago - my regular TN is pain is back … they said they found the blood vessel lying on top of the nerve and fixed it … soooo why am I having this pain ?? Is this normal - if so please tell me it’ll go away … it’s so depressing 
I thought I was cured.
I had MVD pain stayed away for 2 years, though I felt really ill after MVD my TN was absent. Sorry love I can’t be any help really but I do feel for you. Margaret
Hi Margaret and Pat ~ thanks for taking the time to reply…
Pat ~ I’m sorry to hear your MVD wasn’t all too successful. I had kind of in between type 1 and type 2 … my neurosurgeon said since I first responded so well to carbamezapine ( which only worked for about 6 months ) I leaned more towards type 1… however my pain was mostly the burning throbbing stabbing aching in my inner ear that lasted anywhere from 1-15 hrs on end. I’m expecting a call back from the doc later today - I hope he has some answers for me. I started to be weaned off my anticonvulsants but was in so much pain last night I took an extra dose. I soooo hope this pain subsides - I don’t know what i’ll do if it doesn’t
Hi Julia,
I’m 6 mos out from my MVD and i’ve been on meds going into and coming out of surgery. I did have pain but I think it was largely masked by the meds. I did have a major pain spike a couple weeks back and I’m thankful I dont feel much now. My Neuro and I think there was some relief but certainly not elimination of pain. I’m looking at Gamma next. Is that a consideration for you? I’ve noticed I get more intense spikes after I exercise for a period of time ie. month or so…strange huh.
I’m hoping Gamma can make my life more livable without relying on meds.
Are medicated?
BTW it is normal for the TN to return after MVD…the nerve does need to settle down a bit.
Julia,
So sorry about the MVD and the pain still reoccurring. Can I ask did he just look at the trigeminal nerve during your MVD? The reason I ask because I have had 2 MVDS. The first they just found compressions on the trigeminal nerve and within days following the MVD the pain started back with avenge. I met with the surgeon again and told him him still have the electric shocks but I was having throbbing and stabbing in my inner ear. I elected to have a 2nd MVD and the surgeon went down my cranial line to my 7th, 9th and 10th nerves and sure enough I had an artery braided around them causing the ear pain and the shocks. Just a thought for you to consider. Hope you get some rest and answers.
I’ve cut back dramatically on the amount of meds I was taking - maybe I should up my dosages a bit … the doc said to wean myself off them a bit - maybe I did it too much. Sorry to hear you too aren’t pain free after the MVD … I never really looked into the Gamma - If you do go through with it I hope it gives you total relief !! Goodness spikes after exercise !!! I’m dying to get back into the gym and i’ll lose my mind if that happens. Fingers crossed that doesn’t happen. How long after your MVD did you wait before you were able to exercise ??
Andy Rackerby said:
Hi Julia,
I’m 6 mos out from my MVD and i’ve been on meds going into and coming out of surgery. I did have pain but I think it was largely masked by the meds. I did have a major pain spike a couple weeks back and I’m thankful I dont feel much now. My Neuro and I think there was some relief but certainly not elimination of pain. I’m looking at Gamma next. Is that a consideration for you? I’ve noticed I get more intense spikes after I exercise for a period of time ie. month or so…strange huh.
I’m hoping Gamma can make my life more livable without relying on meds.
Are medicated?
BTW it is normal for the TN to return after MVD…the nerve does need to settle down a bit.
Jessy ~ I just read a lot of what you have been through … my God my heart goes out to you ! how are you doing now after the 2nd MVD ?? How long after your first MVD did you have your second ??? did it totally wear you out ? sorry for all the questions it just seems you went thru what I’m feeling now. I’m assuuming the doc just looked at my trigeminal nerve when I was cut open. I kept telling him it was my inner ear that I always felt a stabbing/throbbing/aching feeling that was killllling me… but at times I’d feel that awful pain in my lower jaw that made me feel like I wanted all my teeth yanked out… So I guess he only fixed that problem. From what I read and understand from what the researcher commented on one of your posts is that it could be the 7th nerve that’s responsible for the inner ear stabbing pain. Hopefully I’ll get some answers soon.
Jessy said:
Julia,
So sorry about the MVD and the pain still reoccurring. Can I ask did he just look at the trigeminal nerve during your MVD? The reason I ask because I have had 2 MVDS. The first they just found compressions on the trigeminal nerve and within days following the MVD the pain started back with avenge. I met with the surgeon again and told him him still have the electric shocks but I was having throbbing and stabbing in my inner ear. I elected to have a 2nd MVD and the surgeon went down my cranial line to my 7th, 9th and 10th nerves and sure enough I had an artery braided around them causing the ear pain and the shocks. Just a thought for you to consider. Hope you get some rest and answers.
It is terrible anyone has to go through this. I had my second MVD about a year after the first. The neurosurgeon said it was my only option at that point to help control the pain so we could start a family. I am 27 now and I was diagnosed at 24. I had the throbbing and stabbing when they did my first mvd but the trigeminal shocks which I was having about 500 daily non-stop and to the point I couldn’t swallow because I would be shocked. After they were able to control the trigeminal with the MVD the ear became more prevelant to the neurosurgeon. He decided that he would severe the 7th nerve and then decompress the 9th and 10th. He told my husband he never saw an artery literally braided down anyone’s cranial line. I won’t lie the second mvd was alot tougher because the 7th cranial I believe has your swalloing mechanism. So for weeks after I was struggling with relearning to swallow. At one point I didn’t know if I would want the second MVD and I said I would rather give birth to sextuplets. It was really hard to go through with it but I am glad I did. I am not pain free and have some bad flare-ups but I am off all medication, I just have pain meds, which I am grateful for. I don’t know if it will stay that way in the future. Just gather what ever information you can and keep it at hand when you speak with your doctor. If you need anything let me know. We all need all the support we can get! Hoping for a pain free day for you.
Julia,
Even though I didn’t have any nerve pain after my MVD, the neurosurgeon told me before leaving the hospital that sometimes they have to go back in and put more cushion around the nerve. After coming completely off the meds I still have no pain, so that didn’t happen to me. He also said it could take awhile for the nerve to heal.
I would suggest you talk to the surgeon.
I found Jessy’s reply interesting. Gives you something to ask your surgeon.
So sorry you went through all of this and are still feeling pain. I hope you find an answer soon.
Connie
12 days post-op is not a long time considering you had major surgery. It took me 8 months to get good pain relief from my MVD. I wish I could tell you the pain would go away, but I can’nt. What I can tell you is be patient and know I am praying for you.