Hi im new to this forum. I am due to get the microvascular decompression operation in a few months to cure my trigeminal neuralgia. I am wondering if anyone has had this op because i would like to know a bit about recovery etc... I know about the operation itself as i have researched it and even watched the operation online but i would like to know about after the op. Thank you
I had the operation on 21 June at Frenchay Hospital. It has been a fantastic success. The worst
part was the effect of the general anaesthetic (vomiting) later that night. I felt no pain or discomfort - no need for paracetamol even. I was discharged after 48hours and told to report to my GPs' surgery to have the 27
staples removed after a week. As well as staples over the cut there were 4 on the top of my head which had been screwed to the operating table to keep me motionless. I was td mnot to wash my hair for 3/4 days and than to use a mild shampoo eg Simple.The actual scar is about 5cm long and is now covered by hair. If
you watched the american film on YouTube you know what's in store!. There is also an
old TV series made in 2006 called Brain Doctors about the pioneering work of the Bristol Frenchay hospital.
I hope this may be of some use.
Good Luck I'm sure you won't regret it.
Could you tell me where Frenchay hospital is please and whether it was private or nhs as this is possible surgery that could help my daughter
Thank you
I hope surgery goes well for you
Frenchay Hospital is an NHS hospital in Bristol. It has a very good reputation in MVD surgeries, both for HFS and TN sufferers. 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.
Hi
I had TN for 5 years steadily getting worse and worse untill i couldnt function with the pain and drugs.
I had my MVD in july 2011 and all went well initially.
But due to some complications i contracted meningitus. 4 lumbar punctures and 2 weeks in hospital later i was fine no symptoms no TN and off the tablets.
Now nearly two years later i have started to have the occasional "Shock and pain" this time on the same side but in my front teeth and top lip. I am so so worried, dont know how i will cope if it develops into what it was two years ago, off to the Docs. tomorrow to see my options.
What a terrible story Neilupand down. I do hope you can sort things out.It sounds as if the nerves covering
the front of the face are affected.
I had my MVD operation in June 2011 at Frenchay hospital, Bristol and touching wood and crossing
everything I haven't had any pain since then. The operation was 100% successful. I am so grateful to
everyone who made it possible.
In passing I would like to add that the side effects of the medication (Tegritol first & then Trileptal) that I took
for 3 years before the operation, have finally disappeared. My memory is back to what it used to be (!) and I
no longer fall over.
My wife had an MVD 15 months ago by a surgeon from Frenchay and has been fine since. Living in Wales, we could not get referred to Bristol Frenchay so went private at Bristol Spire. Surgeon was great.
suffered TN for 6 years. TN now in 2 branches of the nerve - waiting to see welsh neurosurgeon. Did you pay privately for the MVD surgery as well as the initial consultation in Bristol and approximately what are the costs. Heard excellent reports of MVD surgery in Bristol. Thanks
I love hearing about the many successes of getting surgery. I had a different surger because of the MS problem. It was a radiofrequency surgery where they put a needle into my cheek and "fried" the affected trigeminal nerve, the one in my jaw. They burned it once a year ago, it came back and they did it again harder (hotter) and it is doing great so far. It has been 8 months of painfree so far. The doc who did it is very experienced and has done lots of these plus the one you guys had. I am in the US (Oregon). i like that people are getting help in the UK. I like hearing success stories. It is good for the soul. Thanks for sharing everyone.
Hi LoopyLee, the surgeon we had was Nik Patel who has done over 200 of these MVDs. Its not cheap, 2 years ago we forked out in the region of £15000 overall including scans, consultations and the op. Nik operated out of Frenchays (NHS) as well as Spire (private). Do all your own research and contact the Trigeminal Nuearlgia Association and be sure its what you need and want. Good luck, and let us know how you get on.
Since the op, my wife gets occasional 'twinges' which I put down to the nerve, which is a huge bundle of fibres, destressing itself from the days it was being pushed out of shape by the blood vessels. (3 in my wifes case).
Go here for a nice story
http://neurotalk.psychcentral.com/thread2052.html
Yet another example of the mess the Welsh NHS is in.
I HOPE YOUR OPERATION WAS A SUCCESS. i HAVE JUST UNDERGONE THIS 2 WEEKS AGO. aa GOOD RECOVERY SO FAR ALL BUT NUMBNESS TO FACE PAIN FREE SO FAR.
How are you now? What's your recovery like? I have my MVD in May. Excited, but worried as well. Need it to work.
good luck MarIa x
On 6th June 2011 I had a MVD operation at Bristol Frenchay Hospital on the NHS. It was performed by Mr Nik Patel., and has been 100% successful. Not a single twinge since then. Fantastic!
Hello,
its lovely to read all your posts about having MVD surgery and recovery. I had had a phone call today from queens med in Nottingham to have MVD surgery on 12th may 2015. I am very nervous but I know I'm in safe hands. Could anyone tell me if possible how long the surgery is please. They have found my archery is lying underneath the nerve which the consultant says it makes the operation a little more complicated and the risks area little higher.they also have no idea what they can do until they get in there so to speak. Thank you xx
My wifes operation took barely more than an hour.
Thank you for replying, that's very fast compared to what I thought it may be. Hope your wife is well. Thank you
Hi, You have yours 3 days before me! Mine will be at Kings on the 15th May 
Really hoping it works as I'm sure you are too. Wouldn't it be great not to have TN, I've forgotten what a pain free and drug free life is like! I have asked the surgeon very little about the op which I am starting to regret. I'm heavily reliant on the internet for info and those wonderful (albeit a bit naff) MVD films. I'm expecting 1-2 hours and have been told by Kings that my stay will be 5/7 days. Need to be out under a week though as my son's last primary sports day is 7 days later! However, as I have been to work on several occasions in severe pain in the past 6-8 years, and moderate pain most other times, I will be taking all the time off afterwards that I can and recuperate properly! I really hope all goes well with your op and will keep everything crossed for the both of us. Marie
Many thanks Loopylee
Hi Marie,
Thank you for sending me a message 
. I really really hope all goes well with yours! I was the same I asked very little info about it but my husband was sure the consultant/surgeon said it was around 6 hours long which I thought sounded a little long but on other hand they have found a complication with me, some how iv got it on the left and right branch but instead of the archery going over it's under the nerve and the surgeon says it makes things more complicated and the risks are a lot higher ie stroke and he said that it was extremely rare to have it the way I have so fingers crossed all goes well but I was that taken back by it all I couldn't ask questions as nothing was coming out. The surgeon thinks iv had tn about 10 years but gone undiagnosed as the drs kept blaming it on stress, I'm 29 and not a stress sort if person! I hope we both have success and be rid of tn for the max 10 years!!. Please make sure you rest afterwards and do not run before you can walk as we will have better chance of it working well . Iv had to finish work as has the tn has got to the stage where the pains there all the time badly and I keep passing out due to the pain. The drs have me on morphine but don't always work and plus I have a 2 year old son to look after so not a ideal situation. I hope you have plenty of help throughout the whole duration. This operation is going to transform our life's and we will be able to go outside in the rain/wind and be able to eat instead of drinking food 
. You have all the luck and best wishes in the world from me. Would be lovely to know how you get on xx