Hi, i guess its with mixed feelings that i am sharing my news. After 6 painful years i have decided to have surgery and have booked it for the 19th June. So many members have had MDV this year and because of their willingness to share their experience and reading their progress its helped with my decision. Thank you to those who have been so forthcoming with sharing their journey, their ups and downs and especially the minor details that are often not mentioned by the doctors. This site is truly a blessing.
Hi Betty, I can totally understand “with mixed feelings” I felt the same way when I made my decision.
I think what made it easier for me somewhat was realizing there are no guarantees in life.
My life consisted of me being in horrid pain everyday to varying degrees never below a 6/10 and usually 8-10/ 10. I was on long term disability through work, home bound, no driving for over a year. My pain was med resistant and worsening.
No compressions ever found .
I researched and read as much as I could so that I made an informed decision. Not a decision out of desperation…
I had run out of options med-wise and knew I didn’t want to do any nerve destructive procedures. ( I was advised against these by numerous specialists)
So going into surgery I knew there were no guarantees, and I was ok with that. At that point I felt that at least I could check the box and say I tried mvd. My NS said no guarantees, if this doesn’t work, we’ll look at opiate therapy…
3 compressions were found 8 weeks ago.
I am TN pain free ( still on Tegretol for my right side TN, I’m bilateral) I’m off the Baclofen and Dilantin, and I feel good.
I knew/ know the reality that this could come back, but I am grateful for everyday with no TN pain, and am now starting to embrace planning for the future…
I wish you all the best of wishes and hope that you will finally have long lasting relief from TN.
Feel free to message me with any questions or concerns, positive thoughts my friend.
((( hugs ))), Mimi xx
Yay! Good luck to you Betty! Please keep us posted on your progress after surgery or have someone else log in for you to update us. Sending positive thoughts your way. (((((((((((((((HUGS))))))))))))))
There has been a HUGE upswing in MVDs here this spring - 1.5 years ago when I did it -- there were so few stories - and most that were here - were the small percent of bad ones...
I hope you have a great TN / MVD surgeon - that is one of the most important steps to success.... glad you have been able to take the step to hope!
Best of luck with your upcoming MVD surgery. I will be praying for you and your surgeon. I have TN type 1 & TN type 2,but the meds: Trileptal have controlled the pain for the most part over 3 years. I did lose my mgt job due to all of the issues trying to work a 50-60 hr a week job in insurance claims, but I am on long term disability. I still have fatigue, balance issues & blurry vision and other minor symptoms. You are courageous and we at Living with TN support your decision. Keep us informed as you go through this. God bless you!!
As I like say. You have already done the hard stuff. Living with TN and making the decision to go forward. I agree with KC, when I had my MVD surgery about a year ago the overwhelming amount of stories about MVD were negative in nature. I am glad more positive stories have emerged since then to give others hope. Be opti