Hi all iam new to this site, wish I found it before, I had mvd on 18th december at addenbrooks hospital im cambridge the surgen mr mannion, I couldnt cope with the tn any longer 3 yrs of my life in awful pain, and oxcarbazepine 2000mg a daycwasnt working, iam still resting, with mums help, get v tired bad headaches, although today not bad, still now amd then dizzy, iam 39 yrs old, and feeling 99 lol.but no tn, although im still having nightmares thag I have pain.no stiff neck no stabs no burning in jaw, no pressure type thumping in head.no cheek or tooth electric shocks.which is fantastic although it must be pshycolgical I still cant wash face worrying pain would be there.it is scary having the op but its the best thing to have.i know in few months time or whowever long it wil take to recover I will get my lofe back.to be honest afrer the op I felt like id been run over by a bus, was constantly sick, couldn't lift my head felt rotten. But if anyone is worried about it think positive the resulrs are fantastic iam weeing off meds now 300mg a day and paracetamol regulary.and soon I hope will be completely off meds. I wondered if anyone who has had mvd, afterwards do they grt tired quickly, also I thinkvthe feeling of a tn attack is goi g to happen but it doesnt I wondered if it was the feeling coming back into the nerve endings where I used to get the attacks.oh and I can now blow my nose and not have an attack.happy.i just cant belive the little information and advice there is out there for tn sufferer's.as not a very common thing to have.i used to live near brighton, and wasnt getting anywhee with doctors, I moved up to Peterborough and after nearly 3 yrs I saw dr and had surgery only a few months.wow.and I highly recommend mr mannion.sending my thought out to the people who are suffering with this dreadful painful disease. Xx
Hi Jules. I've had 2 MVD ops addenbrooks. The surgeons are so good there. I was very tired for quite some time after ops. Was told it was quite normal after head surgery. Its been Nearly 2 years since my last op but I still say no to ice in my drink and flinch at the dentist. Things will get better. Tracey
Tracey Gant said:
Hi Jules. I've had 2 MVD ops addenbrooks. The surgeons are so good there. I was very tired for quite some time after ops. Was told it was quite normal after head surgery. Its been Nearly 2 years since my last op but I still say no to ice in my drink and flinch at the dentist. Things will get better. Tracey
Great to hear someone elses story. Thank you,gosh 2 operations.very brave.x
When you have TN you just get to the stage you would do anything. The fear of it returning is always with you. Mine came back after a car accident when I banged my head. The Teflon pad was dislodged. I must say I would probably have a 3rd if it should ever return.
im a37 yr old lad n just had my mvd on 27th dec after suffering with tn since 1998 they always told me it wasnt tn i was to young n very uncommon in young lads so 16 yrs agonizing yrs later they did a mvd,after the op i felt absolutly rotten throwing up n the headaches were unbelievable and i was still getting face pain but hospital had took my tegratol off me an told me to stop,i had been taking 1200mg a day i thought i would of weened off them but i did as i was told,they let me out new yrs eve i still had face pain but two days later they were gone,so i thought everything was good can put up with headaches sickness and tiredness without the face pain but just the other day i started getting some slight twinges the same type i would when i was pain free which would scare the life out of me thinking its staring again, but i just hope that this doesnt come to anything , as for all your post op ailments they sound just the same as mine glad to hear everything seems to have gone well for you jules x
That's a very long time to suffer with tn Phil,Hopefully you are on the mend,they scare me too thinking its going to come back,i get twinges in my upper tooth,like before,but im sure its all the nerves coming back.I went for a walk today,round the corner,and then bathed the dog lol.after that I had to go for a sleep I was shattered.
But this is my 2nd day of no headaches.which is great.Where did you have your mvd Phil.Addenbrooks were amazing,my dr was great too.he gave me a hug and he was so happy afterwards to tell me it was successful.I wish there was more research on tn understanding why we got this.the melon nerve I heard gets damaged,which can be caused by a lot of things,eg;aspartaime,sorry spelling bad,which is in all diet drinks,chewing gum,makes me wunder ive drank diet coke since I was 3 yrs old.So I just drink water now,not taking any chances of the left side flaring up.I was so depressed with having tn,it practically ruined my life,when the meds didn't work.i am so happy to start to get my life back.even to eventually walk the dog when its windy,i cant wait lol.
And everyone I spoke to did not know what tn was.it needs to be known more,as it is a horrible disease.Glad your doing ok too Phil.And I hope it doesn't come to anything too.I have my check up next month.cant wait to see him and give him another Thank you hug lol.xx
Tracey Gant said:
When you have TN you just get to the stage you would do anything. The fear of it returning is always with you. Mine came back after a car accident when I banged my head. The Teflon pad was dislodged. I must say I would probably have a 3rd if it should ever return.
Im very overdue for a trip to the dentist,when I feel better I do need to book an appointment,which I will not be looking forward to.2.If tn came back I think I would have op again,different story when I was in hospital tho.felt so rotten,and mum asked me that question if I would have again and I said no way.but I would if I had too as it ruins your life.Glad your doing well after 2 years Tracey xx
hi jules i had my op in james cook hospital in middlesbrough, dont think my doctors were as friendly as yours i didnt get any hugs or anything like that just a catheter put in lol i dont get to see my doc till 16th apr i thought that seemed quite far off! but apart from catheter and the lack of hugs the nurses and everyone else in the hospital were great,your right about not much info out there never found this site till 2yrs ago n when doctor first mentioned mvd i went home n looked on internet theres not much about it there really! dont no how long i will b off work for no ones said a length of time my sick note runs out next week n i no im not ready yet n work keep bugging me but will av to get another sick note dnt no if you work did they how long you would expect to b off. hope you stay pain free x
Hi Jules
I had my MVD on December 17th at Coventry Hospital, woke up with the right side of my face numb, and the hearing muffled on that side - but most importantly no TN pain. Unfortunately I haven't had the smoothest of rides since the operation, I had the most terrible headache on Dec 26th which only got worse, and then I started being sick so ended up back in hospital. After two lumbar punctures and a week in hospital (Borders General Hospital - we went to Scotland for Christmas), I was transferred to the Western General in Edinburgh as they have a neuro ward) to have a lumbar drain fitted as the pressure after the second lumbar puncture was really high, and cs fluid started leaking from my wound. After two days of having the cs fluid drained, and a further leak from the wound, I was taken back to theatre to repair the two leaks. Spent another week in the Western General and have since returned home.
Having good days and bad - feel extremely tired with headaches and yesterday I felt really sick, but am hoping that there will soon be more good days that bad. The treatment at Coventry was ok, but both hospitals in Scotland were fantastic...so caring, really helpful. In fact the neuro team at Edinburgh were so brilliant that I think we would travel the 6 hours north should I need further treatment!
In the week after surgery, I was so convinced that the pain would come back, I think I actually felt a pain or two in the night, but I'm sure that I dreamt it so I know what you mean.
So pleased that you are now able to blow your nose without any TN pain, I'm enjoying washing my teeth on my upper right side - although I'm still too nervous to chew on that side. All in good time. xx
Hi Phil,dr said about 6 weeks to 2 months off work,and I will be able to drive after 3 months.i do a lot of work at home but do drive a lot.i can understand the driving after 3 months as I get quite dizzy still.i would just keep getting sick note until you feel up to it to return bk to work,you will know yourself,for me its been 5 weeks this Wednesday,and I know im not ready,even tho I work a lot at home,but im at mums atm,when im ready will go bk home.but not yet.How are you feeling,hope your getting better.
Hi Grace omg,so sorry to hear all the problems you've had.Bless you.im still abit numb on my right side of mouth,i can chew but end up bitting my inside of mouth as numb.its strange brushing my hair on that side too as cant feel anything.ive been doing a lot of research now as have time.And looked at a clip from parliament he was saying in 2010 he wanted it to be more understanding in the health profession.and more understanding.
ive even looked up how they position you for the op,as I wundered why my right leg had no feeling lol all very interesting as got time to look.
I did wake up during procedure tho.heard my dr and sidekick,i tried to lift my right arm to tell them,but couldn't,lasted ten mins,spoke to dr after and they investigated it.but I don't want to sue,i am so so happy ive not got tn.bless them the anethatist was scared but this happens in 1 in 100.000 ppl.
only me lol.im just happy ive not got the pain anymore.i hope you recover well now after all your problems.its great listening to others and messaging back.i don't feel alone anymore.xxxx