Awaiting MVD for Trigeminal Neuralgia

Posted , 12 users are following.

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.

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  • Posted

    Although i have no answers exactly Mrs S i too am in the same position as you and am wanting to know about after the op. I have had TN for 6 years. Im having the op in aberdeen royal infirmary,as i live in the north of scotland. I was told i would be in hopsital for 1-2 weeks,it is usually a week but because i have a short neck they are going to have to manipulate my shoulder so that it is as far from the op site as possible,was told i would be in a lot of pain for quite a while because of this. Was told after this i would be off work for a month. I hope your appointment comes through soon.
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  • Posted

    Hi Loopylee

    Having my op tomorrow so will be able to let you know what to expect soon. Wish me luck!!

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  • Posted

    Oh wow, good luck for tomorrow, hope all goes well for you!
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  • Posted

    Have been thinking about you since you got your op, hope you are doing ok xx
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  • Posted

    Hi Loopylee

    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

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  • Posted

    Oh I'm so glad ur ok, or at least going to be. Thanks for the info....doesn't sound as bad as I thought it would be either. Thats the thing...at least it will get rid of this horrendous pain we have. Hope you keep getting better and better. I hope my appointment comes through soon too. Thanks again.
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  • Posted

    I will be thinking of you. Please keep in touch and let me know how you get on,
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  • Posted

    How have you been feeling recently Mrs S? Hope you are feeling a lot better. I haven't heard anything yet.
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  • Posted

    Hi Loopylee

    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!

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  • Posted

    Hello Mrs S, I got a phone call this morning from Aberdeen Royal Infirmary. I am booked in for my op on the 28th january which is only 2 weeks away. Hope your recovery is going well.
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  • Posted

    That is good news. I am doing well, dizzy spells more or less gone and scar hardly visible. Op area still a bit tender at times but not enough to worry me. I've started returning to work (on reduced hours for a couple of weeks) - still get tired very quickly. Tri gem pain 99% gone so all was worth it - great to have my life back!!! I will be thinking of you and I'm here if you need some support. Good luck. X
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  • Posted

    HELP! Been a sufferer of TN since 2004. Had initial surgery (blocking the nerve) in 2005 which gave me two years relief, and since then the pains have increased. Christmas past my medication was increased to 1000 m of Tegretol and just this week I have increased to 1200 m which is the maximum. In the Highlands of Scotland, but my Dr unfortunately doesn't know TN, referred to me ENT who also didn't know who's about to refer me to a 'pain specialist' who seemingly has a back log of patients and so the lord knows when I will see him. So, I've no option really but to push this from my side. Read up lots about MVD and with luck this may be an option for me. Can I have a note of the Aberdeen Royal Infirmary surgeon so that I can had that over to my Dr and just tell him to get me an appointment. Hope you are both doing well and enjoying having your lives back.
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  • Posted

    Hello Katie

    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

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  • Posted

    Thank you ever so much for coming back to me so quickly. I've been Tegretol for 7 years now and am taking what they tell me is the maximum of 1200m daily! And still I get regular paralyzing bouts every hour. Anyway, with luck Loopylee will come back and let me know who her surgeon at Royal Aberdeen was so that I can take the matters into my own hands, as they say. Bless my Doctor but he hasn't a clue and has no idea of where to direct me. I've another appointment with him on Friday and so if I gather the information I need I'll go with it all and just say to him that he needs to do this for me. I'll keep you posted and if you are still in touch with Loopylee, maybe you would be so good as to ask her to get in touch too. I will keep you updated and keep your fingers crossed I've not waited too long before getting surgery! Take care. Katie
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  • Posted

    I had my MVD surgery done at the National Hospital for Neurology and Neurosurgery in central London. I was operated on Tuesday morning and discharged on Sunday that same week. It was a lot less painful than I imagined. At no time did my pain level go above 4-5 on a scale of 1 to 10. An oral dose of morphine takes away whatever pain there was within minutes. I was able to walk unaided from day 1 post-surgery. By day 8 I did not need any more painkiller. Fully recovered physically within 2 months, but unfortunately my spasms remain although about 30-40% better than pre-surgery.
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