Originally Posted by Doodle bug7

I understand completely what you are saying. I was diagnosed with
Trigeminal neuralgia about 15 yrs. ago. The Doctor put me on a low
Dose of dilantan and Ametriptilene. It worked, so I thought that was
that. In fact it took care of it for 10 yrs. I was happy about going on
with my life and forgetting about those lightening strikes that hit my
face out of the blue. It had scared me beyond words.
Ten years went by and I continued taking my meds and go to my
job as a nursing assistant on the medical floor of a busy hospital.
During this time I met and married a wonderful man, whom I
explained why I took my medicine.We were married for about 2 yrs.
when our lives changed forever. We were shopping at the Mall in
Joplin Mo. when I felt the first twinge in my face. Oh my god this
couldn"t be. I stopped talking immediately.
I could not go to work and my husband and I slept in our recliners.
I couldn't go to our bed because the lightning bolts were hitting
regularly.I just did not know what to do. I was so scared .
The next day my husband made an appointment for me with a
neuroligist. He got us in that same day. I was admitted to the hospital
that evening. They started a morphine pump. For 9 days I was there.
To this day I have no memory of that time.
I was transfered to Kansas City to a neuroligist who could do a
surgery called a Microvascular Decompression. I was hopeful about
it but at the same time I was terrified. I was recovering in ICU when
I felt a jolt in my face. The surgery FAILED. During the next weeks
I was like a zombe. I wrote everything down as I was too scared to
speak. I would lay on one side on a air mattress in the floor. I dreaded
moving if I needed the bathroom.
Dr. Kaufman gave us another option. I could have a Balloon
Decompression. They stick a needle in your cheek to the base of the
skull and try to destroy the nerve. The first one didn't work, the
second one didn't work and the third one did not work. I was losing
weight as I couldn't eat and also dehydrated. This was the darkest
time in my life. My husband would sit by my side and say a prayer
to give us strength and guide us to a solution.
I don't know how it was decided, but we were headed to Mayo
Clinic in Rochester Minn. I had to lay down in the back seat. I rode that
way all the way there so scared to move. We went through a snow
storm in DesMoines so we had to travel slowly. It seemed like a life
time to get there.
Finally we were at the emergency room at St.Marys hospital. which
is a part of Mayo.I was quickly admitted. I had about 4 or 5 nurses
and maybe 2 doctors gathered around me. The next morning, I was in
surgery! Dr. Pollack had a plan to parcially cut the trigeminal nerve.
It also failed I was so devistated. I truely had a plan of my own by
now and it was the only way out of the hell I was going through.
I knew I could get out of the misery by taking my life. It seemed
that I almost had a peace in my self by knowing there was a way out.
After this brain surgery I was put in the pain unit. The nurse kept
reminding to breath because the medicine was slowing everything
down so much. I did not care if I breathed or not. My husband was
always at my side through everything reminding me he loved me so
much. Tears would come to my eyes as I looked at him. He knew I
loved him too. He was my rock and he didn't ever complain about
those nights when I kept him awake just so I knew he was there.
He never faltered with his love and devotion.
Three days later I was back in surgery. This was the last option
I was given. To sever the trigeminal nerve completely. I don't remember
anything about it as I was sedated. I was told that this would make
the left side of my face numb. It did. The operation finally took hold
a few days later, because the pain stopped. When they wanted me
to take a shower a couple days later and it would be my first time
up, my head was so dizzy. The room spinned around me.
I was released a couple weeks later. My strength took awhile
to come back.
The first night home I felt a burning in my face. It continued the
next few days and was turning into actual pain. We called Dr. Pollacks
office and we asked about this. They said it might continue or maybe
it wouldn"t. Not a real good answer.
This is five years later and the pain has been with me all this time.
I found out that it actually has a name. Anesthesia Delorosa. It is
a dreaded complication of a microvascular Decompression. Now I hurt
24/7 with a different kind of pain. It gets severe sometimes It is
not the lightening bolts that hit before, It is not a scary pain, like
the trigeminal neuralgia but none the less, PAIN. I take around 20
some medications every day. I lost my job that I loved so much. I
get a disability check every month. I don't drive anymore. I did get
off the narcotics I was taking. I take Neurontin, Amytriptine, Lyrica,
Hydroxizine, paroxicam, peroxitine. I developed restless leg syndrome,
so for that I take Requip. I also see a Psycolagist once a month to
deal with evrything that has happened. We do a kind of self hypnosis
relaxation tapes. I can say that I am happy for the most part. I live
each day the best that I can. My husband trys very hard to make me
smile, actually he doesn't have to try that hard. He has been by my
side every step of this journey, not behind me and not ahead of me.,
but right beside me.
I know how devastating this condition can be and I pray that somehow
everything will get better for you.
Sincerely, Patti Hall