Hi my name is clair and I have just joined.
I have posted this in the occipital and other section but know a lot more people have mvd for tn than GN so thought might get more response.
I am 6 days post op for Geniculate Neuralgia.
I have had the pain for 6 years and could not get a diagnosis until I sent my notes to America.
I went to Pittsburgh for the surgery as noone in England would touch me.
I ended up having surgery twice.The first time the surgeon said he moved and padded loads of blood vessels from nerves.He said they were bigger and more of them than he had ever seen before.The nervuus intermedus was tucked under the 8th nerve and all of them were squashed together maming it hard to get to but as he had done so much he hoped that would be enough and woke me up/The pain was horrenndous I cannot even describe it.I was screaming in pain.The surgeon explained if he went back in I would definitely lose my hearing without a doubt as the stem cell test showed damage even with water touching it.I didn't have any choice and thought hearing loss one side is livable with so he went back in.
When I came round from the second op the ear pain had gone and despite feeling like I had been hit by a bus I was over joyed.
20 hours later it came back.
I am now left with 100% hearing loss on left side.Difficulty in swallowing food and have to wash anything down with water or I choke.Left sided facial weakness, severe double vision which means I cannot even walk unaided as I am very dizzy and wobbly.It is very hard to focus on anything and when moving everything is jusst a blur.
I have been told all symptoms apart from hearing loss should improve within 6 months but I am so scared it is untrue.
Has anyone else had MVD and had these problems and come out the other side cos I really would love to hear from you.
I feel so lonely and despite family telling me it will get better I just want someone who understands what I am going through.
Thanks in advance
Clair x