Awaiting MVD for Trigeminal Neuralgia

Thanks ever so much YKL. After my initial surgery back in 2005 I had two full years of no pain, and then it came back with avengeance, which I had been pre-warned about. It was a case of getting the medication dozes correct and that has been the way I've been since then. It's just that now the pain can't be controlled so even 30/40% of what I previously had, so I'll accept that. It's such a shame that there is no complete cure out there. Do you take any medication at all, or do you just accept the pain bouts when they come? Would be interested to hear.

Hi Katie,

Sorry I did not make it clear that I suffer from hemifacial spasms (HFS) rather than TN, although both conditions may be cured by a similar procedure, MVD surgery. Have you considered a second surgery? It is common for HFS sufferers to go for MVD #2 should the first failed or there is a recurrence. In the case of HFS, some patients become spasm-free as soon as they wake from surgery, while others like myself may take up to 3-4 years to see full resolution.

Best wishes

Leon

Thanks for that Leon. I'll have to wait and see what the surgeon says when I have the consultation ... Good luck on the full resolution though. That does indeed sound very hopeful. Take care, Katie

Hi guys never been on these sites before but feel I can offer TN sufferers advice about MVD I'm 30 years old and male I had TN for over 2 years on my right side of my face I took every drug known to my GP still with little or no effect other than mental issues caused by them, in the end I was on 30 pills aday that includes 1600 mg of tregretol, plus extra in the night if needed, live was rubbish especially for my wife and children but without my wife I wo

Continues from above!!!!!!! Would of still been on the drugs, she pestered the GP nearly every week as no one really new what TN was about and how it ruins your live .we was pushed from pillar to post in the end I was given a appointment at Queens hospital in Romford essex we I meet the neurologist within one week I had MVD the pain went straight away the pills stop straight away even though they said carry on with the tregretol for a while but I new in didn't need them anymore. Four weeks later still pain free and I'm going back to work. I've lost some feeling in my head/face and a bit numb on the side of my tounge as my blood vessels were matted to my nervous so there was abit of damage but it might sort itself out I think that's a small price to pay to be pain free. I ain't going to lie i was so scared pre op as you have to sign a disclaimer which states there a many horrible things that can go wrong but being a TN SUFFERER I had nothing to lose in away. Fingers crossed this is the end for me and if I can offer help to anyone that has this horrible thing I'll be more than happy to help. Matt.

Hi everyone.

I am 20 years old and I was diagnosed with TN 2 years ago. I have had so much hassle with this condition. Firstly I have been allergic to every type of medication that was suggested to me. Finally I am on oxcarbazepine which is not really effective for reducing the pain but if I increase the dose anymore I am literally like a zombie and constantly sleep. I waited to see a surgeon for so long as all my appointments kept getting cancelled. Finally I am seeing Dr Wadley who is a neurosurgeon in London.

I have seen and heard of so many horror stories from MVD surgery which has freaked me out. Wondering if any one could answer my questions.

Do they shave quite a bit of hair? Are you awake through the surgery? How long did people generally take to recover?

Once you agreed on surgery how long did it take to get a date for the surgery?

Best wishes

Laura

Hi laura,

I would just like to say don't worry about MVD as like me your young so your be fine and you should NOT listen to the horrible story's you find on the Internet otherwise your make yourself worse I found stress made my TN so much worse. I had MVD 8 months ago and im still pain free I'm very lucky I would recommend it to my loved ones if they had TN, they do shave a bit of your hair which I know for a girl isn't nice but if you have long hair I'm sure you could cover it you also have about 40 staples on the cut I no that's sounds horrible but just remember after the surgery you can get back to your live again because TN ruins it. I hope you get help soon do you have a date for the op?

I've put a picture so you can see post op just so you have a goo idea.

Thank you for your reply.

I do keep reminding myself that the surgery will be nothing compared to the pain I am in at the moment.

I currently don't have a date for the operation. I am meeting with my surgeon today to discuss my MRI. Not sure how long it takes to get an appointment. Can't imagine there's a long queue for brain surgery?

Glad to here you are still pain free

Best wishes

Laura

I am now one year post op and can say that the operation was 95% successful - still get the odd twinge but it is absolutely nothing compared to the constant pain of TN and being drugged up to the hills. The MVD has given me my life back for which I am truly grateful. It does sound scary but I received the most fantastic care at the Walton Centre in Liverpool. Like Matt, I am here to support anyone who needs it.

Hi.

I will finally be having my mvd surgery on 17th December. It is my 21st on the 22nd of December and was wanting some advice. I was hoping to go for a small meal with my family on the 23rd to celebrate but don't know if the surgery will prevent me from doing this. I know everyone is different in how they recover but do you think I'm being overly optimistic in thinking I will be able to go for a Meal 6 days after the surgery?

Hi Laura

I was surprised at how tired I felt post op and I was a bit wobbly on my pins for a while. I wouldn't have been up to going out 6 days post op - I really hope you recover quickly but don't expect too much too soon. I know it's a really special occasion but it may be better to wait until you can really enjoy it. Good luck - keep us posted on your progress xx

Hi to everyone.

I'm new on here and wanted to say I'm glad I found this site today as I'm having my MVD surgery in 2 days!

I've found information from Mrs S really helpful.

I was sat in my theatre gown for 8 hours,that was 2 weeks ago,then I was informed my op had to be

cancelled as there was no bed available in the High dependency ward.I don't blame the hospital as I know

they tried their best to get me in.

The thing is though I had prepared myself mentally to have the operation done.All that was on my mind

then was to get it done and I would have been grateful if it only took away 10% of my pain.

Anyway,waiting to be contacted,not knowing when I would get a call,feeling unprepared I don't even know

all the reasons.What I do know is I've been in agony,down in the dumps and got thinking more about the

actual surgery.I guess I just got scared.

I feel much better about things after reading what Mrs S has had to say and I'm thankful for that.

I have typical TN on right side of my face and Atypical TN on the left side plus Fibromyalgia thrown in for

good measure.My Neurosurgeon says he can't promise me a high percentage of pain relief from the MVD

surgery but feels I will get some relief from it.

I've been on Gabapentin for a long time to help the Fibromyalgia and every pain killer invented

(none of which work for nerve pain)

I've been on Lamotrigine,Carbamazepine,none of which I could tolerate.

The side effects are horrendous.They then wanted me to go on Oxcarbazepine.I got the script but when I got the pain,I found I couldn't physically put one in my mouth.I just thought,isn't it all bad enough without

being a guinea pig and taking drugs with horrendous side effects that eventually would have no effect on

the pain anyway.

I told them I would not trial any more drugs.I was then finally told I could find the MVD surgery helpful.

This is where I'm at today!Surgery day after tomorrow if it isn't cancelled.

My thoughts go out to every person that has TN and the invisible

torturer better known as FMS.

Tomorrows another day and I live in hope a cure is found for both.

Good luck Christina x

I'm sorry my last post seems all over the place.I did write it in paragraphs! It just didn't post in paragraphs!