Thanks so much for this diary of your MVD experience! It helped me a lot. I had my MVD on the 27th of April 2010 in BARTS Hospital in London c/o Mr Habib Ellamushi. I was very scared of this procedure and was due to have it in 1998 however the surgeon at that time said there was no evidence of artery compressing the TN and instead we opted for alcohol/glycerol injection. That lasted about 6 Months as did the Gamma Knife the following year. Last year after 14 Years of pain I decided to go for MVD. The first MRI scan didn't show any compression however interestingly on the 2nd examination it did show up quite clearly. Now at 5 weeks following surgery I have had a very similar experience to you. I have been adjusting to sleeping normally again without all the drugs, especially Tegretol! I used that for nearly 14 Years!!
Post surgery I am now feeling much better. I was deaf in the right ear and had tinnitus and that has now pretty much gone back to normal. I too have numbness from my ear down through my lower jaw and along my tongue. I guess that may or may not return to normal but I can live with that if it means I don't have that TN pain! They took bone from my leg to repair the hole they made in my skull.
I am very pleased with the result. I am not taking any medications now. I have also had a few weird pains but they are not like the electric shock, stabbing burning pains that I was having all these years. I thought they could have been pains from the incision and where the bone is healing post op. I am getting used to cleaning my teeth without biting the toothbrush because of the pain and washing my face and splashing water. Also talking, shaving, walking, swallowing and wind on the face. All new experiences and I'm praying to god that this is it and no more pain. 14 Years is a long time. I've been through many procedures including MVD and have taken anti-depressants, anti-convulsants, had countless sessions of accupressure, accupuncture, massage etc and nothing has worked. They even sent me for a years psychotherapy! I return to work 09th of June and am looking forward to reengaging in the world - pain free! Long may it continue. I wish you well. I agree with you that the actual surgery was nowhere near as bad as I had imagined it. Prior to surgery I was in a state of collapse and now having been looked after by an excellent surgical team and also having such a positive result this is something I would definitely have done again, no doubt.

So happy to read of your good results, Enfield. I had a MVD in October 2009 and am medication and TN pain-free. I have some very mild twinges now and then and some hypersensitivity on my scalp and ear on the TN side occasionally but they are nothing like TN pain (and not in the same place), so I think they are a result of 3 kinds of surgery over the years (and only noticeable because the numbness from those surgeries is almost all gone now). I hope you continue to do really well!

I was not a member of the forum when Ella posted her original entry, but just want to say thanks to her and all who contributed to this thread. It is one of the best threads I have ever read. You are commended for sharing such detail and I so hope for your continued relief. You have been very blessed!

On another note - Seems most of the sucessful surgeries have been performed in Canada. Here in the US there is currently such a debate on healthcare reform that I was just curious if there have been any sucess stories from the US. We have all been lead to believe down here that the Canadian healthcare system is absolutely horriffic and that we should not support any sort of government health system. Any thoughts on this?

Not to stir up a debate, and if this is too off topic moderator, please remove.

Thanks!

Yes, there are success stories from the US. MVD was done in Pennsylvania.

Thanks Jean, glad to hear that!

Sadly Ella's pain has returned after 5 years of freedom . She is back on meds and is starting to get a bit of relief with the meds .


PEACE
BMW

I am happy to be able to correct the post above. My pain has not returned, at least not permanently.

July 22, 2010
5 year anniversary of my MVD

This year was a little different. I had a few more shocks than last year. Still had my usual seasonal blip in April like I seem to have every year. When I say blip, I mean about 5-7 hours of mild shocks, maybe 2-3 every hour and then it disappears for another year.

This year in June I had a 2 day problem. I had a huge shock in the middle of the night that jolted me out of a deep sleep. The attack continued very strongly for two days. I actually was convinced my TN had returned in full glory. I went back on a low dose of Tegretol and it seemed to work. I stayed on the Tegretol and had no shocks for a few days and then reduced till I was off the drug. The shocks were gone and I have not had any since. That weekend was a horrible stormy hot and humid weekend and my hormones were all over the place. I am starting to go through peri menopause and besides the TN, I have lots of other lovely symptoms that go along with this.

How am I now? Nervous. I am concerned and watch the days on the calender to try to time when the next possible attack could come (to coincide with my cycle). I have read how a sudden spike or drop in estrogen can affect the trigeminal nerve and I am convinced that is what is happening to me. I believe it falls under the heading of "Menstrual Migraines" http://today.msnbc.msn.com/id/4465789

I have an appointment booked with my neurosurgeon for October just to see if he can rule out another compression, but I am pretty sure that if it was a compression the TN would be more consistent.

Physically, I am fine and 95% pain free and 100% medication free.
Emotionally, TN has a strong hold on my life.

I still don't take any day for granted without TN and without Tegretol.

Hi Ella,

I was just reading through your post and thought maybe you could help me figure out what's going on. First of all, I'm so happy that you have made it 5 years doing as well as you have. I had my mvd June 16, 2009 and also gamma knife done May 2009. I did really well the first year. I wasn't able to go completely off the tegretol. I take 600mg a day now since my surgery. I also notice I will start having some shocks around the week before my period. Last month and this month it's been a little more consistent. This is day 9 of experiencing the shocks. Sometimes 4-5 a day, and the last few days only about 1 a day. I went up to 700mg when this started happening. Usually they're mild shocks, but occasionally a sharper one. I'm starting to wonder if the tn is going to come back full force. I'm afraid to eat and to brush my teeth again. I'm just wondering if you could share any thoughts as to what you think may be going on with me. My original problem was veins that were growing and compressing my nerve. I'm worried that maybe they're growing back already. My neurologist, (not my neurosurgeon) doesn't really have any idea what the problem could be. Any thoughts would be appreciated.

Thank you,

Laureen