I realize this is an old chat. But when I saw this I was quick to see if any of these rhizotomy recipients were still around. My TN is activated by an inoperable tumor pressing on my brain stem. I would like to hear how some of you are doing now since it has been almost a year out. Mine was done in July '16 , I have had the usual side effects until a few weeks ago. I am now starting to have nerve discomfort again on a scale of 5/6. Ron, I enjoyed your chat didn’t remember reading it last year. Hope you are still doing well.
Gloria37
What kind of surgery did you have? MVD? Do you have any numbness ? If so…where? Thanks for any info and so glad you are pain free?.
Hi there!
No, not MVD. I had craniotomy with rhizotomy. Cut 9th cranial and trim 10th. Went from morphine to Tylenol in 8 hours. No symptoms since March 16, 2016.
No numbness, can talk and swallow fine. I’ve lost some taste bud function in the back left part of my tongue, so some things taste differently or not at all, but it’s nothing I can’t handle! Sure, I have some neck aches but a warm pad and aspirin, and I’m good to go.
Dr. Frederick G. Barker
Massachusetts General Hospital
Boston
Now I am one of the 7 or 8 of these that he has done on those with GPN. All successes.
Love,
Maine_Member
So glad to know that you are pain free! May it be that way for you forever. So your rhizotomy was done on CN9 basically for GPN. I think I could handle some taste bud changes, but don’t know if I can handle half of my face being numb…especially if I don’t get pain relief. The major portion of my pain is in my eye, and the neurosurg doesn’t know if the surgery would take care of it. Plus CN5 also has some motor function…and I worry about how they would make sure not to affect that portion. Thanks for the info and glad to know you are doing so well!
I was told that worst-case scenario I would need a feeding tube for the rest of my life (lose swallowing ability). At the time I was 69, and it was my first surgery ever. But, honestly, the pain and uncertainty of how I would feel each and every day (after 15 years) was too much to bear. I am off ALL meds: Lyrica, Cymbalta, Neurontin (max. amounts of each). I can think again! Surgery is always a risk, and I understand your concerns. Your situation is very different from mine, and only you can decide what’s right for you.
Much love,
Maggie
So glad it worked out well for you. I am going to be 69 in a few weeks…and the uncertainty of day to day and hour to hour is getting to me after 10 years of unremitting pain. I keep missing my grandkids events (piano recitals, plays,etc) and no one even bothers to ask me to go out any more, because I’ve had to cancel so many times. I feel like I merely exist. I have an appointment with pain management July 7th, and if they have nothing helpful to offer me ( and I honestly think I have tried everything since I first was struck by this monster in 1995)…I may just decide to go for the surgery. My family does not have longevity (Mom 76, Dad 70, brother not quite 72) and although I think I live a healthier lifestyle than they did (all smoked), statistics are not in my favor and I hate the thought of not being able to enjoy the rest of my life. Thanks for your encouraging words and may you stay forever pain free.
(((hugs)))
Fran
You know, Fran (and I hope I’m not bothering you with this added comment), in life there’s always a trade-off. Always, even when we deny the truth of it.
Your grandkids would rather have you in the audience loving every minute even with a numb side to your face than the situation the way it is now.
Time to look at the positives of a surgery. The negatives bog us down and, in my case, many times I wished I was dead.
Love you!
Maggie