Anne MacAloney

I got a tooth extracted in December of 1997 and soon after I was getting sharp pains in one half of my face and also extreme pressure in my right side as well I was two years to get the doctors to believe me that it was NOT sinus infections and I got tegretol chewtabs that took me into my first remission (for the shock pains) I have heard that Atypical TN does not go into remission but having experienced it myself I know that the shocks go into a remission even if the constant underlying pain is still there.  I have now had 2 remissions the first one lasting 6 years and the second lasting 1.5 so I am only expecting half of the last if i get another remission :) ( fingers crossed) I have tried carbamazepine baclofen neurontin gabapentin amitryptiline and a few others i forget at the moment :( I have tried alternative treatments such as a chiropractic treatment called UCT  Massage therapy and craniosacral therapy also hot and cold packs reiki therapy and relaxation techniques I find distraction is a good way to help I have had ATN for 14 years now and still i don't think i have "accepted" it as some may say but I am still here :)

My MVD February 21 2011 

I had type 2 Atypical Trigeminal Neuralgia. It was triggered in December 1997 and it took 2 years for a diagnosis of Neuralgia I then had a remission of 6 years when it came back again for 2 years. I had another remission that lasted 3 years this is when i found out i had Trigeminal Neuralgia, not from doctors but from my own research.  On February 8th 2011 I was fortunate to be referred to Dr Dhany Charest in Moncton New Brunswick and was informed I could be helped with an MicroVascular Decompression surgery which is said not to work on Atypical but I had to try it even if it didn't fix anything … it was my last resort.  

I woke up in recovery on February 21 feeling groggy but coherent and was asked by the nurses "what do you feel" and I immediately realized i had no TN pain I cannot explain in words the relief I felt I burst into tears and replied "nothing" 

I had always had an underlying ache in the right side of my face and my skin felt thicker and very fibrous on that side …all this was gone! 

I was wheeled out of recovery and into NICU I saw my husband and my parents in the hall as i passed them and don't remember much else except for being outfitted with special socks that massage your legs all night to prevent blood clots. I was also given Dilauded by injection.  At 11 pm I was moved into the ward with 3 other older ladies.

The next morning I woke up and was helped to wash and had catheter removed. I had a couple of glasses of milk and soon vomited. My loved ones visited me in the afternoon and I was in so much pain from having many large neck muscles cut (a necessary procedure) I couldn't talk loud enough for people to hear me well and then had to repeat myself which  also hurt so I got angry and upset and started crying which made others cry which just made me feel worse.  Eventually the nurses asked everyone to leave and gave me a large dose injection of Dilauded again and I got relief enough to sleep for an hour or so then expected my sister but was unaware the nurses sent her away from me being in so much pain.  

Wednesday morning I vomited again so I got a popsicle and turned away breakfast but only had one Dilauded pill then only 2 Tylenol at 10 am I had dinner and supper and kept both down I had 2 visitors in the morning and 2 at night.  Boys from physic got me walking and using stairs and a nurse changed my bandage.  I had a bath after visiting was over and spent the rest of the evening walking around the hospital I did not sleep well and very homesick and had no meeds since 10 am.  

Thursday morning I was up, washed and dressed, had breakfast and was looking forward to seeing  Dr. Charest I saw him around 9am he asked how i felt and i quickly said "good enough to go home" !? I told him my progress so far and that i had a little dog at home i missed terribly. He told me the incision looked good and that it was an artery that was laying on my trigeminal nerve and that is where the teflon pad was put. Aftercare instructions were to get the staples (16 ) out one week after surgery, don't lift anything over 5 lbs, bending will not hurt me but will be uncomfortable, no driving … and to come back and see him in two months. I was released from the hospital on February 24.

Thursday night at home I was having some "breakthrough pain" but was hoping it was just  that also what I think is where the plate now lies feels cooler.Homecoming was very emotional and was good to sleep in my own bed but the nightmares were terrible I think every fear i had about leaving home came true in that night of dreams when i could wake up "safe" in my own bed. 

I was only in the hospital for 4 days and 3 nights but having been woken up every 2 hours for this long I woke up at 2 and or 4 and or 6 every night for over a month once i got home. I got some pain if I was up and about for too long.  My arm where the heart monitor was was extremely painful for almost 2 weeks. I was able to take off the bandage 5 days after surgery and carefully wash my hair with an antiseptic soap (Dettol) warm water felt really good.  I got the staples out and was scared to sleep because of being scared of the incision opening with nothing holding it closed.  I was told to put cream Polysporin on the incision but i found this felt like you were rubbing your brain.  I had several days of difficulty with my husband in not communicating on both our parts. I found it very hard to allow someone else to take on all my responsibilities no matter how short of time. 

I had days i felt like i could do more and then days i felt like i did too much and would feel queazy. Today I am 2 months out of surgery, I have been back to work part time for almost a month I have anxiety but am dealing with it. I am doing full house work now (some tasks I have adapted) I feel sad for my friends who still suffer. I am extremely happy and nervous for my new life since i got TN when I was 22 I didn't really have time to find out who I am but am looking forward to meeting me :) (((HUGS))) to all.