MVD next week December 12th

Hi everyone,

Exactly one week until I have to undergo MVD. Mixed feelings!
My neurosurgeon saw two blood vessels pressing against my trigeminal nerve, which was a relief after many years of being wrongly diagnosed.
When he suggested brain surgery, I didn’t hesitate one bit.
Now I’m still convinced I have made the right decision, but the reality of the whole thing is starting to dawn on me…

I am well prepared: I have bought lots of useful stuff, such as a headband, a travel pillow, lip balm, new socks, slippers, undies, mini toiletries, magazines, laxative, etc. Not sure whether I’m mentally prepared to undergo surgery again though.
(I had my thyroid taken out in March of this year.)
I especially hate the bit where they put the mask on your face and you feel as if you are being suffocated, right before going under. I am having nightmares about that part.

I have also done all the things you are NOT supposed to do when preparing for MVD: I watched several YouTube videos on the procedure and I read various research articles (as a PhD candidate I have unlimited access to a University library database) on topics such as ‘risks in cranioplasty with autograft vs. titanium plate/mesh’ or ‘early recurrence of TN in cases with veinous compressions’, which is what I have…

The fact that all of my family (parents, sisters, uncles, aunts, etc.) live in Belgium does not help much either. My poor husband is stressed out already after supporting me through many years of occasional flare-ups and several months of severe suffering. My four children are tired of seeing their mum cry out in pain and deserve better… I am sick and tired of being sick and tired.

I so need this MVD, even though it totally freaks me out!

Anyway, I will have to find a way to stay ZEN.
I guess focussing on the fact that my surgeon is an expert might be helpful, as well as the fact that the procedure has an 80% success rate?

Any tips or suggestions, both practical or emotional, are more than welcome!

I will keep you posted on the outcome, if interested.

Thanks for reading this!

Hello Lilli777,

I’m thrilled to report back that I just had my MVD surgery 11/30/2016 @ Lahey Clinic, Ma. I was D/C’d 2 days later to my home. Zero TN pain and very little surgical pain. In the hospital they managed my 1st night “pain” and nausea w/heavier medication. I was too expecting more pain but “thank god” it never came. Post-op day one I continued my TN medication (already decreasing) and Tylenol for surgical pain. I frequently used ice on my surgical line. That helped me a lot. I feel amazing. I can not emphasize how well I feel and it is not one week out of surgery.
My plan is to relax and recover for the next month. At this point it feels like too much time but I am going to take “Dr.Winteroff”. :wink: I think I deserve it!
Hang in there and don’t let your mind wander. The odds of success are on your side and there are many great surgeons. I’m sure yours is one. I’ll be thinking of you and everyone else that is suffering from TN and wishing you guidance and support through your decisions. Good Luck!

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Can’t help with advice on surgery butwanted to wish you the best!!!

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Hi - Please stop worrying about the oxygen mask! Just be sure to tell your anesthesia provider that having it strapped on before you go to sleep makes you feel like you are suffocating. They can simply hold the mask above you so that you breathe in more oxygen as you drift to sleep. Also ask them to give you some midazolam (Versed) for relaxation before you go back to the operating room. I have been an anesthetist for over 30 years and this is not something you should worry about…but make sure to tell them beforehand. Sometimes people forget that all patients are not created equal! Do not be afraid to voice your needs/concerns to them.

Best of luck and may your pain be vanquished with your MVD.

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Lili777, you sound well prepared. just keep a positive attitude and think how wonderful it will be without those terrible bouts of pain ! I had mine done three years ago and am so glad. I will be thinking of you tomorrow.

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I hope everything goes well for you. We all deserve to be pain free. One day of the incredible pain of TN is one day too many. Take care.

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I hope your surgery went great and you are healing well. It took me a couple of weeks to feel human again. I can’t wait for an update.

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