I had my MVD 5 years ago

[Joccia]

Hi
I had MVD 5 years ago.
For you who are thinking of having this surgery, please feel free to ask questions.
I would also like to come in contact with people who also had a MVD a couple of years ago, to share experiences.

Joccia

[ella138]

Did it work?

[Joccia]

Hi Ella
Thank you for answering my post.

First and foremost. Yes the surgery was a success and for anyone contemplating of having a MVD but fearing the brain surgery: IT IS SO WORTH IT! I wouldn´t hesitate doing it again.

My story:

I had severe TN for two years and eventually lived in a haze of all the meds I was taking - in higher and higher doses.

I begged for the surgery but the doctors were hesitant. They reasoned that the surgery was so dangerous that it was an option only when the meds could not take care of the pain any longer.

TN gradually got worse, I hade to take more and more meds.

Eventually I was not functioning at all - I was just sleeping, had severe amnesia and other Tegretol-related side-effects. Still breakthrough pain.

Then finally I had my MVD.

I wish I had had it sooner - why did I have to live through two years of pure terror and torture first?

This has destroyed my life.

During the surgery one vein was cut and one artery was moved. None hade shown on the MRI I had done twice.

The surgery was not easy - I had severe complications and it was a very difficult time for me. But it all eventually cleared up. No complications from the surgery now.

Except that - since the doctors never put the bone back I am always very aware of the fact that I literally have a hole in my head - so I always protect my head from people touching it etc and I don´t like going to the hairdressers anymore.

I had to go back on Teg. post surgery because the pain was still there. I took Teg - but in a much much lower dose - for the first year post op.

I am medication free since Aug 2004.

No pain. Just small sensations which keeps me in a constant state of fear of recurrence.

I read your MVD-journal yesterday and some things you wrote was as if I had written it myself.

TN still has an emotional hold on me. I still assume that every sensation I feel is TN coming back. It’s the underlying damage that Trigeminal Neuralgia has done to my confidence to move past this long and painful chapter in my life, that I can’t seem to get over. I continue to not take any day without TN for granted.

When I read this I felt less alone - someone who would understand where I´m coming from.

I often feel lonely though I do have a husband and good caring friends - but they cannot understand my feelings and what this Suicide Disease Pain can do to a person.

My doctor has told me that living the experience of TN can - as in my case - result in symptoms like post traumatic stress disorder.

My life will never be the same.

What makes me sad is that although the MVD was so successful - TN is still a part of my everyday life in my constant state of fear of recurrence.

It has gotten better though - I don´t think of it every minute of every day now - but still the fear is a constant part of my life.

Is it possible to move past this experience and just start to live again without having the absolute horror of recurrence destroying what could now be an otherwise happy life?

It is as if the disease somehow won anyway - why can´t I go on with my life happy with the fantastic result of the MVD? Why do I still live with TN darkening every day of my life?

Will this fear ever end?

(I do apologize for my English - I live in Europe and English is not my native tongue.)

[ella138]

Thank you for your story. We can always use positive stories on this website. Often people who have successful MVDs leave the boards to get on with their lives (and who could blame them).
I was glad to hear that I am not the only one out there afflicted with the fear of reccurence. Like you, I don't think about it all the time, but often enough that TN is still very much a part of my life. Welcome to these boards. A new experienced voice is always an asset. You would be surprised what you can learn from others and how much you can help others. It's definitely a win win.
BTW, your English is better than mine and I am a Canadian! :)

[Joccia]

Thank you!

It feels very comforting knowing one is not alone.:)

I tried to be as sincere as possible in telling my story, the good result as well as what has been difficult.

I would be happy to answer any questions someone might have concerning my experiences.

[2mchpn]

I had my MVD 11 years ago and it worked great! I was put on Depakote and Nortriptolin to preveent it from coming back. After about 9 years of that, I thought "I" knew best and took myself off the Nortriptolyn and stayed on the Depakote for my headaches. Well needless to say, this time the Dr. was right! Afer about a year without warning one rainy day WAM! My TN came back worse then I can explain and only YOU who read this understand. I was put back on the Nort. and a bunch of other meds and about 2 months of the disaster that I had put myself through was pretty much over. Now it only stricks here and there but for the most part just reminds me that I have TN and it is there to stay. Yes I to live in fear of the return of the undiscribable pain we feel during an episode. OH! The Dr. Called my surgery and "failed" surgery after 9 years. Go figure that one?

[saraiderin2]

What complications did you have as a result of your surgery?

My MVD is in 11 days. I am very much a peace with the thought. I have heard a lot from people having csf leaks. Two people I heard from reacted to the anesthesia and got chemical meningitis. Someone else had a stroke. I know of others that permanent facial numbness. (which I will take any day over this pain.) One got anesthesia dolrosa. I am not going to focus on the negatives. I believe the surgery is the right choice for me. I have a great surgeon and in the long run things will be just fine.
Sarah

[Joccia]

Hi Sara

You are right in focusing on the positive – the surgery is from what I´ve heard mostly easier to go through than it was for me.

I had problems with balance (severe and for me the worst post op problem), problems focusing and reading with my right eye, fluid in my right ear (pain, pressure, difficult hearing), facial paralysis (treated with massive doses of cortisone which was very unpleasant in itself).

When I got the facial paralysis (I got that a week or so post op) I was of course scared but I reasoned that if that was here to stay I was willing to pay that price if only TN was gone.

I also had to have spinal taps done the first couple of days post op to remove some of the excessive fluid that was building up in the brain.

During my stay in the ICU I had hallucinations (probably due to too fast tapering of one of my meds which can cause this side-effect if tapered too fast).

Couple of months later I slipped into a depression when I found I still had to take Teg. in spite of the MVD.

All these side-effects cleared up gradually. Non now.

I wish you all the best!!

Joccia

[msmaggie]

I had a somewhat successful MVD in May of '08 - 9 months ago. The surgery went fine and I had no complications. It was successful totally for about 4 months, but the V2 and V3 pain returned and I was back up to the max Tegretol. I then have had a rhizotomy in Oct for the remaining pain. I have been weaning down off the Tegretol and am down to 300 mg/day and dropping by 50 mg a week. I feel optimistic that I can ultimately get off all the meds, feel tempted to just stop completely now, but feel I should be as cautious as possible. I, too, feel as if I'll never get over the paranoia and terror that this could come back and haunt me again. I know it's relatively 'early' in the time passing from my MVD, but I do wish that TN could really and truly become a distant memory.

msmaggie