I hate this for my Dad. I am his only daughter. He has had three years of pain now, the loss of his Dad and Stepmother in '08, the loss of his Mother's mind to dementia in the early '09, and now, his only daughter struck down and housebound, for the most part, by intractable pain.
He sounded so desperate on the phone tonight, it hurt me. My father is usually a level-headed and patient man, the chief engineer of a large, downtown high rise for most of his life, and a natural problem solver by nature, he lost his cool tonight. He did not like the answers that his only child I had for him tonight at all. "Well, who can solve it? That's what I want to know." He exclaimed. "You can't live the rest of your life on drugs. People on drugs only live to be about 60 or 70. You have a lot of life to live. Somebody in the world can fix this problem. FIND THE SURGEON! I DON'T CARE WHERE THE F*CK HE IS IN THE WORLD WHO CAN JUST FIX YOUR PROBLEM, SO WE CAN GET ON WITH THINGS! I NEED YOU BACK! DRUGS WILL EVENTUALLY F*CKING WRECK YOUR MIND AND BODY, AND YOU'RE SUCH A SMART GIRL!!!!!! WE'RE NOT GOING TO LOSE THAT!"
"Daddy, (yes, I still call him that)", I said. I've read so much. I spend my days and nights sometimes trying to crack this code. Don't you think I want to, I have little girls to raise. I want my life and my career back too. I wish I had the answers you want to hear. I'm sorry. You aren't listening to me", I tried to keep my voice calm. "As I understand it, and I have studied it until I am blue in the face, Atypical Trigeminal Neuralgia patients have two choices, try a surgery that has a very low success rate for them, or maintenance medications . . . . I'm sorry." I felt outside of myself, like a doctor delivering bad news to a disgruntled loved one of a chronically ill patient.
He paused for a very long time. "Well, I guess you need to get government benefits for disability for this". I could tell he was on the verge of tears, but the only time I've ever seen him bust down was at my Grandfather's funeral. He was not going to cry in front of me.
"I've heard stories, Daddy. The government doesn't usually consider Atypical Facial Pain of any kind a disability. I can try." My voice was getting weaker, the pain was getting more intense and my ability to talk was diminishing. (I can type like a demon, but talking is a bit more difficult).
I wanted to give him some kind of hope. "Well", I said. "There is this surgery called Microvascular Decompression. It works for some of the Type I patients. I've explained to you the difference between us, right?" I asked, hoping he remembered what I had said. "Yes, I remember", he replied, weakly. "Sometimes they can find a blood vessel which is compressing the nerve, a cyst maybe, or something causing demyelinization (sp?) of the sheath that covers the nerve".
"WELL", he rebounded with forced enthusiasm in his voice, "Let's find out who is the best at it wherever they are and get it done while we still have the money to do it. Steffi, (only he calls me this), c'mon now, we've gotta get this resolved now, we're going around in circles! Somebody somewhere in the world, and it may not be in the states, knows how to resolve this". (as this has been his experience in business, just resolve it and move on).
"Ok, Daddy. I'll find out about it. I'll call my Neurologist and ask her to go ahead and refer me to a Neurosurgeon, ok", I said, knowing that ATN patients rarely benefit from MVD, but knowing I will travel any road to try to solve this both for myself, my father and my girls.
"When will you be calling her? In the morning?" he asked insistently.
"Sure, I will call her in the morning, ok?" I soothed him.
We exchanged the usual warm "I love you", and "have a good night" and I hung up the phone.
I don't know what to do. I know that this surgery will most likely be of no benefit, in the long run for me, a bilateral ATN patient. But, tomorrow I will call. I will ask. I will try. My interest is different from his. I would rather live a shorter, more comfortable life, than a long painful one. My face screams for my pain killers as I type this.
I am breaking my Dad's heart, and my daughter's (but, I won't even go into that). I feel as if I am hurting everyone around me with this. It's why I just want to find a way to get a stronger pain killer, so that my family can have me, because they love me.
I am blessed with a family who cares, but it is not me, but my body , this little 5th cranial nerve in my face hindering me, and being an only child and mother of two, I am the most needed person in my family. I am still so needed . . . all the time, by someone. I suppose it's a good thing.
Is there hope for ATN patients, I think so, if they find good strong meds. But, that isn't what Daddy wanted to hear. He wanted to hear his "little duck" (it's what he still calls me sometimes, even at 38) could be fixed. I don't think this is possible.
I'm going to go take a long hot shower, as I have taken my allotment for the day, and more, to try to ease the pain and sleep. The end of the month will be so hard. I know.
I hear a lot of Type 1 success stories. If you have an ATN success story, please shoot it my way, please. I would love to know if anyone has ever prevailed at managing or curing Type 2 Atypical Trigeminal Neuralgia, or not. Thanks.
Love to all,
Stef