Tina,
I am going to tell my story from the beginning of my life as it changed in March of 2009 until today. That is going to take some time to get done. But for today I want to share with you what I posted on another neuro type web site for all the wonderful people who come to read your blogs. I feel everyone who is burden with this afflicted should read. God Bless You and looking forward to you and I together help others.

My dear friend Tina,

To all of you reading this thread, Tina is the one that came to my aid during the worst time of my life. I had posted something that said " I can't live any longer with this pain" The AD pain had taken over my entire life. The only thing I could do to get away from the pain was to sleep.

Tina, sent me a PM and told me her story. Needless to say, my hopes, my prayers, my faith, my energy, my life went into 2nd gear. There is someone out there that has an answer.

My neurologist mentioned that there was a procedure out there when nothing else is left to do. He wanted to try more and different meds. I knew that would not help. I was on all of them for the TN attacks and they did not help.

After Tina contacted me, I went back to my neurologist to get more info about it and did he know a doc who could do it. He said yes and set up an appointment for me. While waiting for the appointment, I was on the phone daily with Tina to learn more. I was like a little kid who first found out about candy. I wanted more and more information. It just seemed to simple of a fix. It sounded like a dream that any minute would be a nightmare. I could not understand how was it that Tina and her Doctor had the secret and all these years and months no one else that heard of it. So, I ignored all the " wrong information or bad information " that I was hearing and reading.
Finally the day comes to go see Dr. Miracle. He, explained like Tina, the procedure. I asked him where all this wrong information was coming from: ie: it doesn't work, you can't use it for v3, the surgery hurts and on top of it you are awake!! he set me straight. He said he would not do it if it did not work. In fact he will not put in the permanent unless I get 50% relief. It was a go for me. No questions asked except " how soon can we do it"

Because it is still experimental, insurance companies are really tuff to get approved. The Doctor is your best advocate it getting it approved faster. All my medical records were sent and a letter stating that my AD was extremely severe. I was approved in 2 days. Some patients do wait a much longer time.

Tina, I can't express how helpful you were to getting me where I am today. I am anxious for the two of us to work together to get help for so many people inflicted with these conditions. TN, GN, ON, AD, Neuropathic Pain, etc. There is no reason for so many people to go to dentists, ENT'S, TMJ Docs,etc.

For those of you that are reading and following my post and Tina's posts, please contact us and we will get you our stories and maybe we can be of some help and some hope. Tina's blog is on NeuroTalk. You can find her under the blog name "Burntmarshmellow"

You can also email me direct and I will be happy to get right back to you. If 8 years ago it helped Tina for her v3 pain.....it can help a lot more people who are on this site. We will be watching for members who are crying out in the wilderness and be there for your support and encouragement.

My trial is now over. It was bitter sweet. I wanted the wires out, I wanted to wash my hair, I wanted to stop hauling around the generator box. I was excited .....but only for about 1/2 of a minute. He took them out ( no pain in taking them out ) and I said " loudly" put them back. I hurt. The pain came back right away. Now I sit and wait each day for the phone to ring to set up the surgery date.

Thanks again Tina. Let's you and I work together to get the good news out.

Love you
Cheryl