This disease is eating my mother away. She is losing so much weight, Lost her job, is missing out on life. I think the last time she left the house was Christmas, even that was a struggle. I can see the pain on her. Long story short, she had this pain for over a year. She was diagnosed with TN in November of last year. None of the Medicines she has had helped. She tried, I believe 3 diffrent kinds Since november. I think she has no hope left anymore. Even my father is showing signs of despair. I hurt just knowing the agony they are in.
I think Some of the options their doctors have mentioned is the Surgery (which I think is referred to as MVD) I hear that this is pretty successful, but she may never have feeling in her face again.
The other is the gamma Knife. I know nothing about this, other then it would maybe take a month for them to schedule it.
What did you guys do?
Jennifer,
First of all, I think you're amazing to support & love your mom. When someone has a condition, everyone is affected, but you can all be strong going through this with her. I was diagnosed in 10/2008, but the Gamma Knife in 11/2009 didn't work for me. But, I don't regret it. I have the sensation that someone has shot too much novacaine into my face to the point of aggravation. But, I had to take the risk for myself. I will keep you all in my thoughts & prayers that your mom is able to find a treatment that can give her relief. She is an amazing, strong, & wonderful person. Regardless of everything she has you & your dad. A cancer survivor gave me advice before I was even diagnosed, to just be in the moment. The past is done, & you can't worry about the future. Just this moment. My husband & I are loosing our house, he hasn't worked in 3 years -but is temping. The mortgage company doesn't care. And I try to get up every day, I will admit I get angry & I cry - but I have to. I'm sorry for rambling. My heart goes out to all of you. I am currently seeing a myofacial specialist who is helping me manage my TN, & new facial pain w/ Amitryptiline (spelling may be off) along w/ Gabapentin, & that lovely Clonazepan. You're supposed to stay away from sweets & soda. Which I wish I knew that before hand, but that aggravates the nerve. I don't know if I've helped in any way, but everyone on this site understands. We're all here for each other.
I just want to commend you for supporting your mom and taking this action to help her. You are a wonderful daughter:)
hey jennifer,
i've tried medications with no luck so then i had a mvd was pain free for 4 days then it came back full force. so i had a redo-mvd, with again no luck. then i had something called rfa thats what numbs your face not as much mvd and trust me numbness is better than pain. but the rfa didnt work i lost all the feeling except in my lower jaw where i have pain. so then i had gamma knife. i am currently still in pain and am expecting to recieve another round of gamma knife. i'lll meet with my doctor in april. i'll pray for your mom this is so crippling im only 16 and its like life is on stand still. if you have any questions i would love to help as much as i can