I thought it would be best to start a new discussion so those who want information only may find it easier. Yesterday was my 2nd week checkup. So far no electrical shocks in my left face. I still have tingling upon touch in the left side of my chin (my surgeon warned me to expect this for several months because he really had to manipulate the nerve to remove the FOUR veins pinching it). The numbness in my left face has mostly disappeared but the ear still feels like it's full of water (another expected side effect that doesn't appear to affect my hearing). What I didn't expect is the pain on the left temple from the pin that held the halo - the doctor suspects they must've hit a "superficial" nerve. Some days it's quite uncomfortable and on those days I usually have a headache that's centered around the left eye. For the past two days only taking oxycodone once at night - all twinges and numbness I was experiencing in my hands and arms have resolved and the surgeon confirmed the position of the surgery probably aggravated some arthritis in my cervical spine.
What I learned - I had expected the surgeon to remove the stitches, but they must dissolve on their own. When you shampoo, use the pads of your fingers (not your finger nails) and rub your scar. This will help the healing process on the scar. My scar is thinner than some but it does go a little below the ear lobe, I am now allowed to rub vitamin E oil on that area so it heals better and is less likely to show if I cut my hair shorter. My dose of Tegretol has been reduced by half again and if no increased symptoms after one week, reduce again for another week so I am drug free one month post surgery. The veins will NOT grow back - I was born with my brain wired this way. Made me feel good that it wasn't something I had done that caused by problem.
Great news - I'm not sure if we're allowed to talk about this subject on this website, but lets face it, this disease really impacts your sex life. In my case, my first attack happened during love making with my wonderful hubby of 36 years. I can attest that we're back to normal in that regard and that's probably the greatest gift this surgery has given me!
Congratulations! What a wonderful success story. Thank you for sharing and I hope I do as well as you. My surgery is next week. Best wishes for continued healing and a life where the word shocked means our dear husbands did something totally unexpected and it is never again associated with pain.
Good luck on your surgery and I guarantee you our husbands probably will “shock” us in the future.
I had to laugh at your last paragraph. Chuckle. Who was your surgeon? I'm back to looking for one. I have bilateral Type 2 TN. Thanks for your updates. They are interesting to read and keep up informed of your progress. Thanks.
Tracy aka Tinkerbell
Surgeon was Dr. J Adair Prall with South Denver Neurosurgery.
Thanks for your updates! I’m so happy for you! What a great recovery story!! I am also thinking about MVD, taking steps in that direction. Your comments make me feel better! Enjoy your new version of life!! ; )
Many of us are mature women here and I think we do need to talk about how TN affects our sexual intimacy with our partners. It can put a real strain on a relationship. I am 68 and my very supportive partner was afraid to kiss me or touch the right side of my face. He could sense my fear and anxiety & he was very much aware of what and where my trigger areas were. Now that I am postop MVD, we can cuddle, kiss and do anything without that looming fear.
Good to hear you are doing well!
I cannot wait to be living the life that you have found after MVD. Next week, I hope to get my Christmas present when I awake from the MVD.
This will most probably be your most memorable Christmas ever!!!!
It's been great reading your updates and how the surgery has been successful! The fullness in the ear can be annoying and feel like it's never going to go away, but it will. I'm also happy that I chose to have my MVD (in early Nov) because I feel like I'm getting my life back. I don't have to be afraid to smile anymore since that trigger is gone. Plus, I have a reason to smile now. I also really appreciated what you wrote about how you're "brain was just wired that way". I used to think I had done something wrong or that maybe the doctors were right and, pardon the pun, it was all in my head. When I came out of surgery the first thing I asked my husband was: "Did they find something?" I felt validated to know there were 3 nerves being attacked by 2 arteries.
Keep up the great recovery and posting to help others!