Thought an update was necesssary.
Since last posting things have not gone so well.
I was discharged from hospital and apart from the side affects listed above and the expected surgery soreness I felt ok.For three days I was pretty good and even ventured out all be it in a wheelchair because of the vision problem.I was still getting shocks of pain but the pattern of pain was different and there was times where I had no pain which was a first in 6 years so I was feeling pretty positive.
Three days on I started getting an excrutiating headache and during Sunday night it was so severe I woke up unable to move or alert my husband and just lay crying with the pain in my head.Morning came and I was taken to ER where I was given a lumbar puncture and the pressure was extremely high.They drained some off and gave me a cocktail of drugs and eased the pain a little but to cut a long story short two weeks later I am still in hospital and it turns out I have had a small stroke. I have a lot of left sided weakness mainly in my leg so am waiting to go for two weeks in house re hab.
Baring in mind I live in the UK and I was meant to be in the US for 10 days and I am now in my 5th week this has been a bit of an emotional ride.
I have an 11 year old daughter at home and it has been so hard fro her to understand too.
Easygoing my surgery was actually for Geniculate neuralgia not TN but obviously still MVD hence the reason I posted here as GN is pretty rare I cant find anyone who had the surgery.
Are you not scared having so many MVDs?When do you decide enough is enough. Please don't take that the wrong way it isn;t meant to be judgmental just a concerned question really.
You say the occipital nerve was shredded so what affect has that had on you?Head pain I guess.
My NS said there is no more surgery he can do as he has cut the nervuus Intermedus so that is all that can be done.
It is good to be able to talk to people in a similar situation and know you are not alone in one way but in another it is sad to know there are so many people out there suffering this awful pain.thanks for the support and lets hope rehab can get me back home soner rather than later x