Doodle bug7
Member

My story, my Hope.
I had an MVD that failedI was first admitted to the hospital here in my town. I was on a morphine pump for nine days, then transferred to Kansas city.I have no memory of being in the hospital those nine days. My daughter told me much later that I talked to people that were not there and saw ants fly by in little groups.
Directly after my surgery, while I was in ICU, I had a TN pain. I asked about it and was told not to worry about it, that sometimes it takes a few days. I Knew right then that it didn't work. A couple days later I was released and we went home. It didn't take long before the TN pain returned with a vengeance. The lightning jolts continued in the worst way. I lay on an air mattress on the floor. I wouldn't talk, I couldn't eat, and I was scared to death not knowing if this was all there was now for my life. I lost weight, became dehydrated. I wanted to cry, I wanted to scream, but the fear held me back. I had layed on the opposite side of the pain for so long my ear actually had developed a sore. This was truely the darkest days I had ever known. I hated to move and I would wait as long as I could. The neurosurgeon had talked to my husband and suggested a balloon decompression. They put a needle in your cheek into the base of the skull and try to destroy the trigeminal nerve. Over the next two weeks, I had three of these surgeries and to no avail. The hope I had held onto disappeared quickly and turned into despair.
My husband would sit by my side, hold my hand and pray for us to have the courage and strength to continue trying. I felt like I was the only one in the world who had this tormenting pain.
The last option that we knew we had to try was Mayo clinic in Rochester
Minnesota. We headed right for the emergency room at St.Marys hospital,which is a part of Mayo. I was quickly admitted and had two or three nurses and Doctors surrounding me. Two days later I was taken to surgery
again. The neurosurgeon was one of the best in the world. He explained to me that at this time, since everything failed so far that he was going to partially cut the nerve. He opened my head in the same place as before. When I got out of surgery the pain was very intense and had excellerated the pain to new heights. I was taken to the pain unit where I was watched closely. The nurse kept reminding me to breath as the drug I was getting slowed everything down. I didn't care if I breathed or not at this point.
They took me back to surgery again three days later as obviously That surgery had also failed. The Doctor explained before hand that he was going to sever the nerve and it would make that side of my face numb. It was hard for me to comprehend anything at that time. He opened my head in the same place as before. The lightning jolts stopped. I knew that this was the last surgery that could be done.
I spent three weeks at Mayo clinic. The trigeminal pain had ceased to be
but it was replaced by another pain.
You know I couldn't say the word TN.for several years. It had taken so much from me. I simply hated it all and was very bitter. The pain I have now is not a scarey pain like TN. but it is constant. I didn't even know it had a name.
One day I went to the computer and typed in T-r-i-g-e-m-i-n-a-l, almost closing my eyes.Somewhere in there I read about my new pain and it had a name. Anesthesia Delorosa. I found neuro talk and a brand new world opened
up. This is how I met Burntmarshmellow and found out she has the same pain
that I have. I'm now writing to others and found a lot of people that are suffering from pain but are so positive. I have learned to let go of my bitterness and found I am not the only person that has TN or TN pain.I truely believe that when you see your Neurosurgeon, he will direct you down your own path with courage and faith. Meanwhile, you have many, many friends
at neuroTalk. You know friends are like stars, you don't always see them, but you know they are there. Everyone has a story.
Truely a believer, D. Bug7

Thanks for sharing your story. I wish none of us had to suffer like that, but it's good for us to hear how you persevered and finally got to a better place.

DB7, I'm sending you massive and best wishes for a lot of low pain days ahead.

Big gentle hugs I'm mid attack at the moment and its never been so bad. Thanks for sharing your story. xxx