I haven’t been on here in sometime. I had MVD on 9/12/2012 and wanted to give an update. I have been pain free since surgery and could not be better! If anyone has any questions please ask. You all helped me so much before my surgery and with your tips for recovery. Thank you!
Oh and there is more!! I had a baby last year 
Something that never could have been done with the meds I used to take…he was my only side effect… Lol. I apparently got pregnant during my recovery.
Glad to hear you are pain free and doing well. I’m not sure if I will need surgery in the future. Right now the episodes come once or twice a year so I don’t think the doc thinks that warrants surgery. Congrats on the baby!
Terri I would not have had surgery if it was once or twice a year. Mine were very frequent and would last for months at a time. I had pain almost all the time at the end. How long does it last for when you are having a flare up?
It usually lasts 3 weeks. 3 weeks of pure misery.
Hi Laura, Wonderful to hear you are now pain free and have a baby! Congratulations :)
Hi, I am due to have my MVD on 24th Sept..yikes!! I am extremely worried and very anxious at the moment. This has totally changed my life and my families too. I used to do lots of exercise and can't do anything now, even on the meds that are controlling it for the moment, but have horrible side effects. I just want my life back!! Any advice would be most welcome :-)
Andybysea where are you having your surgery? Do you just have GPN? Where is your pain? Exactly how/what are they doing for your surgery? Do you know why you have this pain? Please look on here for anything I wrote. I have written extensively about my surgery. It was a piece of cake compared to the suffering I endured from this condition. I just passed my 2 year mark of being pain free and I highly recommend this surgery if done by an expert on MVD neurosurgery. I never had anything show up on my scans/MRI’s. My surgeon went by symptoms alone, which is the accepted school of thought with this disease. I had GPN and GN (severe ice pick like ear pain). I had my 5th, 9th, and 10th cranial nerve wrapped in Teflon, 2 large vessels were found laying on my 9th cranial nerve and they were moved, and my nervous intermedious was severed. I stayed in the hospital for only 2 days. Had a slight issue swallowing for a week, vomited the first night postop and had horrible chills and hot flashes if I moved that first night. Was slow moving for a week after and felt like half my head was underwater for a month. I recovered well and had no issues and no lasting problems at all. It really was not bad at all. Good luck to you and can’t wait to hear your story!
Hi Laura, I am having my surgery in the Western General Hospital, Edinburgh, UK. I know this is an extremely rare disease, and my Neuro surgeon said there has only ever been 3 or 4 cases in the UK. My Neuro Surgeon Mr Fouyas has done lots of MVD surgery, but never on GPN, which is worrying me a lot, but unfortunately in the UK I don's have any option to pick a surgeon who is an expert in MVD on the Glossopharyngeal nerve or vagus nerve as no one has done.it They saw a large looped shaped vessel on one of the specialist MRI's that I had done and he believes that this may be the culprit that is compressing my GPN and it may also be compressing Vagus nerve too, as I have also have Syncope symptoms. My pain started just before Xmas last year with a small sharp shooting pain in mt throat and it gave me the fright of my life and at that point it was a tiny spasm. Afterwards it gradually got worse and it made me collapse to floor and i couldn't swallow and started choking and occasionally be semi conscious, this is when the paramedics were called and I was in and out of hospital loads of times, sent home again because they couldn't find anything, left to feel like I didn't want to carry on with my life, I lost almost 3 stone in weight and felt like dying. It was so distressing for my wife and 3 children and even worse because it was over Xmas time when it started. We had to go to private hospital to get things moving and it was actually my Wife that found the diagnosis and sent it to the consultant who swiftly sent us to the neuro consultant and then onto the surgeon. I was put on Oxcarpazepine and it has been controlling the horrendous spasms, but can still feel it going very tight at the back of throat, and along my tongue as if it is wanting to Spasm. The side effects to the meds are awful :-( I was experiencing pain in throat,tongue, ear and I am actually now having small sharp like pains just under my left eye, it has always been my left side. MVD is looming closer and closer, but I know I need to have it. I will do anything to get my quality of life back.
Andy