MVD recovery period

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ive had TGN for two and a half years and it feels like it is now getting more acute with more frequent longer intense episodes. Months of complacency thinking i can control it are now proving false. Thankfully im on the list for an MVD op with a highly reputable surgeon, and im being prioritised now talking and eating is getting trickier. But what id be grateful for is any insight in to recovery time from MVD? ive seen recovery periods ranging from 3 weeks to 18 months. Any thoughts fellow sufferers?

Dan

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  • Edited

    Hi Dan

    I had the op on a Thursday afternoon (about 4 hr) and went home on the Sat afternoon. When I woke from the op I had no TN pain. Only a couple of twinges over the next 2-3 months but really minor compared with the rock n roll sessions I was having before the op. Weaned off Carbamazepine completely within about 3 months and am now 2 years later. Haven’t had a twinge since then, even when showering and vigorously rubbing my face over the trigger points.

    However, mine was a classical TN1 with a really obvious arterial compression of the 5th cranial nerve root and no other complications. I know some people on here and on the TNA site (in UK) have had recoveries that took a bit longer and a few have had relapses - although it is fair to say that these tend to be people with additional complications such as MS or space-occupying lesions etc.

    Are you in UK? If so have a look at the TNA site and maybe join them - you get a load of very useful advice and literature and lots of experience with MVD. Mine was done at Addenbrookes Hospital Cambridge.

    Good luck - let us know how you get on.

    Cheers

    Big D

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    • Posted

      thanks big d. yep i joined the TNA to share the agony! According to my MRI scan i've got classic type 1 so im feeling optimistic. I guess my biggest concern is getting back to work and how long it will take. I get the impression it's variable...

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    • Posted

      I was told not to drive for 3 weeks after surgery. There was no problem getting back to work after a couple weeks but as I needed to drive to get there, I worked from home You're not supposed to do much heavy physical activity but you are allowed to lift a credit card and a glass of wine or beer! You'll probably get your post surgery review in 6 weeks and theyll check your wound healing etc. You might get some gurgling and popping in your ear on the surgery side but that soon resolves.

      Who's doing your surgery?

      Cheers

      D

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    • Posted

      thanks D - that sounds optimising - surgeon is hopefully Nick Patel at Southmead, Bristol. Hes very reputable I reckon so im feeling quite lucky...

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    • Posted

      He is the top man. I was prepared to go to Bristol for the surgery until i read tge reviews and skills of Robert MacFarlane at CAMBS which is in my area.

      On the TNA site forum theres quite a bit about Nic, look for postings from Ali (Alison MARTIN).

      He has also done some artery redirection work rather than the usual decompression with a teflon pad.

      Keep in touch

      D

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    • Posted

      hello Rashine!

      yes i had the MVD surgery at the start of october. the mvd went well but i had a subdural haematoma which they thankfully spotted in the hours after the op when i was in bad way. so they went back in to my skull and sorted this although the second op lasted three times the first one....A bit of bad luck I guess...especially as my father died the night before the operation- i very nearly joined him!!

      the most important thing is that the tgn has gone and after three months im nearing recovery. id definitely do it again to bite into a crisp big apple and brush my teeth without the agonies. And the nhs were amazing throughout...

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    • Posted

      FABULOUS!!! IM SO HAPPY FOR YOUR ITS SUCH A RELIEF TO BE FREE OF THAT PAIN IT IS UNIMAGINABLE!! GLAD THEY FIXED THAT LITTLE HICCUP! THAT HAD TO BE A PAIN WITH THEM GOING BACK IN!!! ALLS WELL THAT ENDS WELL MAY GOD CONTINUE TO BLESS YOU MY FRIEND 👍🙂💋

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  • Posted

    HI Dan,

    I was diagnosed in 2004. After being on LYRICA for all those years, I decided to have surgery in October 2018. My recovery has gone well. I am now only taking 1 50mg daily and pain has greatly subsided. I still have some numbness behind my right ear but most sensitivity to scalp is gone. I am thankful to my wonderful surgeon and hopfully will be off LYRICA totally. Glad I did it. Good luck!

    CAROLE

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  • Posted

    hi when i had the surgery iwasnt very well after as not good with the aenasthetic but after that i was ok and could eat proper food for the first time in a year. the girl in the opposite bed was eating crisps the day after. Our surgeon was amazing

    hope it goes pk, its changed my life. I was wondering what was wrong with me.

    Good luck.

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