Why is it so difficult to share our story of the pain? Maybe because you want so to forget it? Or like in so many cases, no one really believes you because with TN you look fine. I don't know, but what is important that we do is to help others with their pain and hopefully some encouragement. With continued luck that is how my story will end.
In March 2009, I had my first horrific pain in my face. The pain is more than anyone can explain. The TN attacks occur on one side of your face. It feels like someone is stabbing you with a hot fireplace poker over and over again and will not stop. It is endless. My attacks would last from 5 minutes to 35 minutes. You never knew when it was going to happen. Comes just out of the blue. I was having between 10 to 15 attacks a day. It was frightening.
In June 2009 I had the Gamma Knife Surgery. During that month, I only had 8 attacks the entire month and 4 of them were not as painful. Exactly 1 month later I was hit from the rear while waiting for a red light. I got hit. On the way to the hospital I had an attack. The attacks increased to where they were prior to the gamma knife and worse.
Starting in October, along with all the attacks, my face starting burning. Inside and out. The burning pain on the inside was my tongue, pallet, gums, teeth, entire cheek. Burning like you can never imagine. On the outside, from the forehead all the way to the jaw. Lips, cheek, nose, eye.....just everywhere.
This pain is 24/7.NEVER NEVER any relief.
Well, by this time I really found no reason to be around. I was no good to anyone. I was in constant pain and this is no way to live.
I did keep going to the doctor's. Maybe one more of the many many pills that I took would do the trick. All they did was add to the misery. Made me dizzy, sick, double vision and actually a mess of a person.
My neurosurgeon said that he felt he could help me with the TN attacks by doing the MVD surgery. He did say that it would not get rid of the constant burning pain. He diagnosed it at AD ( anesthesia\ dolorosa).
In January 2010, I had the MVD surgery and it was a complete success. I have yet to have an attack. Of course, I am thrilled about that.
The surgeon was correct, the AD was still there and would say that it was worse. The surgeon can't help but cause damage to the nerve while taking the vessel or artery off of the nerve. My vessel was wrapped around the nerve and also like glued to it.
I was put again on many anti-convulsant meds that again did not good. I went to a pain management doctor as I felt that was all I could do.
I was put on 75 mg of Fentanyl Patch and percocet. At is time I was taking 20mg of Percocet every 2 to 3 hours. Much more than anyone should ever take. Along with the fentanyl and that amount they still only took a tiny bit of pain away. I really do not think it takes any pain away....it just calms you down a little.
All I had left was to continue to post pleadings for help on the various internet sites for help. Only by the grace of God, Tina....Burntmarshmello....read one of my posts and answered it. She gave me some hope telling about the stimulator. I asked if I could call her as I was desperate. As some of you that know her....she is wonderful in helping people like you and me.
My neurologist knew of a Dr. here in Denver that did these kind of procedures. I went to see him and he said "yes" it could help. He did inform me, as Tina did, that it is still experimental and could have problems with the insurance co. Well, again, only by the grace of God, I was approved in 2 days.
All patients must have a trail period to see if the stimulator will help. My Dr. said for 10 to 14 days. My stimulator was placed on May 24, 2010. You can see pictures of my bionic woman look under Tina's blog above. I told her to put them up as I felt it could help new people actually see what the procedure looks like when you are done. Yes, I was anxious to get done with the trial. All those wires, and tv cables, etc. were a bother at times.
Then the big day.....take them out. It was bitter sweet. The Doc said.....do you feel like you are getting any relief? I said " are you kidding" I love it. All the pain is not gone; but enough that I feel human again and actually can laugh and go out with my family. He took them out. 1/2 of a minute later I said, " put them back in". The pain was again there.
So.....here I am at the end of the story .....so far. I have to wait 1 month before the permanent placement of the stimulator is put in. It is the same procedure; but will worm the wires down the neck into the little generator box that will be implanted into my chest. I will update you all with pictures and all when that occurs.
I hope the pictures of my procedure will help you get some visual understanding. Also, I had Tina put up the diagrams of the pain that we have that have TN and AD. Please talk to your Dr's about this procedure.
Again, thanks to Tina and all that have supported me, I am on the road to having much less pain.
ASAP
Cheryl