Thanks Mandy & Wendy,
I appreciate your support.
Last year I was in the “should I,shouldn’t I” stage…NOW there is no alternative, I have to do this, and I am grateful for the chance at a better quality of life. Of course I’m anxious, down right scared at times, lol but I HAVE to have this procedure done and try…the pain and its presentation has worsened dramatically in the past 6 weeks alone . I have no words to describe how awful my day to day life has been as a result of this continuos horrid pain, but then again you all know…
I scribbled this in my journal last night, so I would remember this pain…
“Pain along lower teeth, all nerve endings feel exposed, ice pick stabbing non stop in my ear,pain along cheekbone, side of my nose, shocks along gum line into throat. All at the same time…it’s been 9 hours straight…can barely talk, eat or drink…”
I am realistic in my expectations…pain free, med free would be awesome…
I will be happy with one low dose med managing my pain so I can “live” again.
Wendy, I am so pleased for you! I hope your recovery continues to get better and better!
Mandy, we know the risks/no guarantees going in…I hope that your mangled nerve just needs more time to heal and then you can focus on just the left side. It’s one day at a time for all of us. I don’t know if I’ll do my right side yet…it’s been managed well with the meds…I guess we’ll see how I do with this dumb left side. Focus on managing your pain and allowing your nerve to heal…we will be better one day!!! I bet that darn 'ol nerve of yours just needs more time, thats all, continued positive thoughts always!
Excited for you Mimi. I have V3 TN so I can't relate to your type all though I'm sure the pain is the same. When I was waiting for my MVD the fear was unbelievable. I was so scared of everything,,,all the what if's. Then when it was over I ws so happy to see my daughter and husband in my room waiting for me. I stupidly just burst into tears. But it was all good. The expected pain. Stiff neck, sore head. I won't go into the CSF,no pain just a bloked ear and a disgusting dripping. Then the disappointment of still beingg in pain. I thought the MVD would be a miracle and no more pain. But all that was explained to me. My nerve has alot of damage and needs to heal. I'm telling you that so you don't feel the same. I dont know what they will find when they actully see your nerve but I hope the miracle for you. Be excited and hopeful. You are so close now!!
Take care of you,
I got the term "take care of you" from the movie Pretty Woman..love that movie. Remember Julia Robert's friend tells her that everytime she said goodbye. I just thought you know it is so true we need to take care of ourselves, we feel better for it.
Hi Crashgirl, I watch for your updates because your MVD was only a month before mine and your updates keep me hopeful that I too will feel less pain every month. Here is a personal question for you. Actuall you know what I will inbox it.
Take care of you,
Linda :)
crashgirl said:
Great news Mimi!!!
I had mine last October and I can say each month gets better and better. I rarely have any tn pain now and if I do its an annoyance and nothing else. best wishes to you!! Soon you will be pain free, hang in there!!
Thanks Linda, I say that too!! Take care of you!! That must be where I got it from! LoL
I think it’s so important to go in with no expectations but hope.
I also think, based on all the personal stories I’ve read of those of you that have had mvd, and my consultations with ns , that the nerve needs time to heal…after mvd.
I hope your nerve starts quieting down Linda, so you may feel less and less pain!
(( hugs )) Mimi
Hi Mimi: Only you know what is right for you. I did not have MVD because I had a meningioma. I found the pain very difficult to deal with--typical tn on the right lower jaw. Always an 8 or 9 sometimes a 10 which always left me in tears. It interfered with my life both personally and professionally.
I had the surgery 5 months ago today and my recovery has been long (remember not mvd) and my whole right side of face is numb. BUT I have to say as irritating as numbness might be (and it is irritating) not have the pain is worth every little bit of the irritation for me!!.
I think the story is best ended with the comments of someone who met me once before surgery but it was over a period of several hours we were working on a project and then saw me the second time (again working together) after my surgery. Her statement at the end of the second meeting and after the surgery with numbness in place--"its so good to see you smile now that you have had the surgery" In other words I was much :sunnier (usual) after than before.
So good luck on your decision. Please keep us informed and hugs and good wishes to you. Anne
Hi Anne, this is an old post…I had my surgery April 9th and am doing great, slow to gain energy but great no TN pain!
Thanks for taking the time to write…
(( hugs )) Mimi