I was diagnosed by my Doctor as having TN after about six weeks of pain. Not bad. I have been on loads of differing medications and although they took away 99% of pain, they badly affected my blood, my speech and my ability to walk very far.
To cut a long story short I had Decompression surgery six weeks ago. Post surgery has been awful and if I was asked how well I feel now I would say not too good. The right side of my face is numb and that can cause horrible burning sensations all over and my face feels huge and uneven on one side but it is not. I look fine.
Unpleasant as it is I have had wonderful back-up from consultants and my gp.
I would have it done again rather than live as I had been because I really had no life at all.
Remember --- it takes a full YEAR for everything to settle down in head and face after MVD --- I was not in pain at 6 weeks - but I sure was not my normal self - and the staples drove me batty!
Thankyou for that because I know I want to run before I can walk and so want to be "normal" again. It helps to know that it takes others a long time and that in reality I'm doing ok so far. I was not informed that it would take so long. I was - consultants words not mine- told that I would feel "shitty" for several weeks so my expectations of a quick recovery were way off. Feel better now and know I have to keep off treadmill etc for a while yet!
How are you doing now? I had surgery 3 weeks ago. No compression was found and the surgeon told me the nerve is damaged by most likely a virus. He said he cleaned the nerve. I don't know what that means. He just kept saying he cleaned it. I am numb on that side of my face and head. Part of my face is densely numb and burns all the time. I fear AD. I expected some numbness even with MVD but not like the burning part of my face. I have been told it takes time to heal and the numbness should go away. So I am looking for people who have had surgery to see how they are and what it was like afterwards. Would you be willing to share your experiences with me? Thanks and best regards. I hope you are doing really good now.
I am more than willing to share how I feel with you. I don't think that anyone who has not had this experience can fully understand how awful it is.My MVD operation took place in March this year. I was told that there was compression in three places which were protected with the Teflon during surgery and he would check me in two months. I do not have the awful constant pain I was suffering from prior to the op but no-one prepared me for what I have now.My right side in numb in places. Sometimes I don't know that food is still in my mouth and I have to gargle after each meal otherwise food could drop out later. Sounds funny and we do try to laugh it off but actually its embarrassing. My burning stinging sensations get worse during the day and after eating hard or spicy food. I am not able to pronounce some words when it is really bad as the area around my lips( on the right ) feel very swollen. BUt nothing can be seen. I look perfectly normal. I feel as if I am disfigured and have a problem dealing with it. My family are good and try to understand but how can they. I am not depressed as I know I have to live with it but my sympathies go out to you and anyone else who has been left this way. (my Dr could not say whether it would be permanent.) Please talk to me if this will help you
Jenny
JT said:
Hi
How are you doing now? I had surgery 3 weeks ago. No compression was found and the surgeon told me the nerve is damaged by most likely a virus. He said he cleaned the nerve. I don't know what that means. He just kept saying he cleaned it. I am numb on that side of my face and head. Part of my face is densely numb and burns all the time. I fear AD. I expected some numbness even with MVD but not like the burning part of my face. I have been told it takes time to heal and the numbness should go away. So I am looking for people who have had surgery to see how they are and what it was like afterwards. Would you be willing to share your experiences with me? Thanks and best regards. I hope you are doing really good now.