Awaiting MVD for Trigeminal Neuralgia
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I have been suffering with TN for over 2 years and have now been on the waiting list for MVD at the Walton Centre for 4 months. Although I know what the procedure entails, my Consultant gave me no details of how long the recovery would be, what to expect etc. If anyone out there has had this procedure for TN and could give me some advice, I would be very grateful.
0 likes, 37 replies
Loopylee
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Mrs_S
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Having my op tomorrow so will be able to let you know what to expect soon. Wish me luck!!
Loopylee
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Loopylee
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Mrs_S
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thanks for the kind thoughts.
I was in hospital for 8 days but I think that was extended a little due to a chest infection. The MVD was not as bad as I was fearing. I didn't really have a lot of pain on the first day, they kept that well under control. With help, I was up the next day going to the bathroom. My co-ordination was all over the place (still not over good now!) but I was managing to get there under my own steam by day 2.
I had my stitches out yesterday (day 10) and there is a scar about 3 inches long behind my right ear. I must admit, I am still in quite a lot of pain and I find it difficult to get a decent night's sleep as I can't get comortable but at least this pain is going to resolve. The facial pain has gone so it seems as if it will all be worth it!!
I hope that you get your date through soon.
Mrs S
Loopylee
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Mrs_S
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Loopylee
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Mrs_S
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Recovery going pretty well, albeit a bit slowly for my liking!! I am now able to "potter" around the house and do basic things but I can't do anything that involves lifting or using my right arm too much. I still have quite a lot of pain and I'm still having to take codeine. It's a very strange kind of pain involving the right side of my skull - can't explain it really apart from likening it to the feeling you get if you bang your head!! Sleeping is a bit of a problem as it is painful if I turn on to my bad side in my sleep - I wake myself up by yelling out "ow". I still get pretty exhausted but the dizzy spells are now abating, along with the headaches.
To be honest, it really hasn't been as bad as my nightmares before the op thought it was going to be. It's just that, as I said before, the pain etc is just a stranger experience to anything I've encountered before. On the massive plus side, facial pain/shocks has been reduced by about 90%. Still getting a few little niggles into my cheek/lower gum but absolutely nothing compared to the agony I was in before. I am hoping that these niggles may just be things settling themselves down but they really are not bothering me too much.
Hope you don't have to wait too much longer. I know what the wait is like - keep your chin up!
Loopylee
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Mrs_S
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katie45
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Mrs_S
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I'm so sorry that you are suffering so much. People just don't understand how bad the pain is and how having to take such high doses of the anti-epilepsy drugs impacts on your life. I had been taking Gabapentin and Tegretol for 2 years before my surgery.
I would say that my pain has 98% gone - still get a couple of twinges but that is nothing compared to where it was. I really hope that you get the treatment that you need.....keep pushing!
Let me know how you get on.
Mrs S
katie45
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YKL
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