A Father's Disappointment

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

hey girl i will pray for you am so sorry

just rub his neck bless your heart sweetie

be ok just take care your dad am so sorry

hey am hear to listen i do my best sweetie

just talk to the doc but i get relife when i rub my neck

warm or cold towel on your fore head or face ok just try it

oneday i was hurting so bad i rub my neck i feel good

will i pray for ya god bless !!!!!

Stef, Your feelings for your dad are very moving & it must be frustrating for him to see you in so much pain.

Can I ask why you think you were misdiagnosed as having TMJ? I'm pretty certain that this is what I had and your symptoms are similar to mine. I think that nerves and muscles become irritated and cause an ongoing spiral of dysfunction and spasm.

Over the last 6 months with a combination of TMJ exercises and self administered trigger-point therapy [to my neck, temple,jaw and inside my mouth] I am more or less free of symptoms. I've just finished decorating a room and am cooking for a large family gathering..........things I could never have done a few months ago.

Hi Pat,

A bilateral MRI of my TMJ joints showed no abnormality. I even had the radiologist re-examine the results and call me explaining them to me. He said that the surrounding tissues showed no abnormalities. Which is rather confusing, being that I've seen x-rays which showed a blurry mess around the right joint. I have bilateral pain. My current diagnosis is Trigeminal Neuralgia with Atypical Facial Pain.

Did you have the clicking of your jaw and the locking up, as TMJ patients have, I'm wondering? I never experienced those.

I know, Nancy. I wasn't complaining about my Dad. I don't know what I would do without him, honestly. I have taken him to one of my doctor's appointments. He was treated rudely, as if he should not be there, by my Pain Mangement doc. Maybe you are talking about "Striking Back". I am currently reading it. It is supposed to be the TN handbook.

He doesn't really bug me. I just hate that I am disappointing him. I don't have any answers for him. You hit the nail on the head. I would rather have this, than one of my girls. I think you gave me a good idea to send him some literature on this particular subject. He lives in quite a distance away in the same state. He comes to me, usually, if we see one another, or at least meets me half way. It should be the other way around. He is a more active person than I, at 65. I am in awe really, now, of people much older than I and how much they can do, compared to me. Daddy wants to take vacations with my family and I. I do not even know if I can. I never like to be far from home anymore. I barely made it through adopting a puppy for my daughter and dinner with my fiance's family tonight. Daddy isn't the only person I am letting down. He is just the only person who cares so much that he fights side by side with me, but leaving me to make the calls, and doesn't understand why there is no one who can just "fix" it, and I was hurting for him when I wrote this. He's so frustrated. My condition used to anger my teenager. It inhibits my fiance, because if I could work, we'd be doing a lot better. It disappoints my younger daughter, because she likes money too. I guess that's why I'm here, support, information and to help others if I can, because you folks are the only ones who would understand. I'm having a horrible night. The pain is so bad, all I can do is type, but I suppose I wrote this blog in tribute to my Dad, when I did, to describe him, and perhaps for anyone who has anyone in their lives who is frustrated because they cannot just be "fixed".

I am sure that your Dad would not want his "baby girl" enduring this, either, if he knew. So, you hang in there yourself, and thanks for your reply and very good suggestions.

Hugs,

Stef

Hugs,

Stef

Stef, I really do feel for you as I was a daddy's girl and my dad would have been just the same as yours. Do treasure him, mine is now dead and I miss the feeling of being so loved by him.

Regarding TMJ, my dentist told me that I grind my teeth. He moved my jaw around and said that there was nothing wrong with it but my chiropracter noted that the cheek muscles would clench and pull my teeth together. Later, the dentist did approve of my doing exercises. I had few instances of clicking and the jaw never closed tight. However, a normal jaw should open to 3 knuckles width and to begin with I could only manage two. I've never seen a neurologist, I've just gone on my own instincts [risky but fruitful].

The National Institute of Dental Reasearch has 3 classifications of TMJ.

1. Myofascial Pain; discomfort or pain in the muscles that control the jaw as well as the neck and shoulder muscles.

2.Internal derangement of the joint.

3.Degenerative joint disease e.g. osteoarthritis.

All I can say is that by gaining control of my muscles I now don't have nerve pain and I finally have my life back............and when you are 64 that is very precious.

Pat, you guessed it, I just did the knuckle test. I can get three in. Do you think that dental misalignment or bruxism (grinding of teeth) can be affecting the Trigeminal Nerve?

I applaud your recovery. I bet you and your loved ones are relieved you are doing so much better!

The listed causes of TMJ include misalignment and bruxism. Apparently muscles in spasm send messages to the autonomic nervous system which sends more pain to the affected area to protect it. At the time I was diagnosed with TN I was getting nerve pain several times a day so yes I am certain that TMJ can affect the trigeminal nerve [as well as other nerves].

After a short period of doing exercises the nerve stopped firing but I was still getting muscle spasms. However an hour in a dental chair and a filling over the source of the pain brought back the TN nerve shocks for about 6 weeks. At that point I started myotherapy and Ive learned how to remove tension from my jaw/head/neck/mouth using my thumb or index finger. The road has been tough though.

One of my daughters said that she can easily tell that the pain has almost gone completely simply by looking at my face. I just get discomfort now, rarely pain. Yesterday I held a party for 15 members of the family, including 7 grandchildren. I can't tell you how good that felt.

I am sitting here crying. First for your pain Stef... not just physical, but the emotional pain you are having to deal with. We are more alike than I thought. I too, am my fathers Little girl, he also, lost his father in 2008. My mother passed away in 2004 at age 54.... I am a younger (36) year old mother of 3 small boys. I can't even tell you how your story sounds like mine. I sit here and cry when I read people's posts, and finally realize, I AM NOT ALONE!

I am so thankful that I found this website.

PAT- you mentioned TMJ, which I was diganosed with in the Army in 1993. Unfornuately I have 1 & 3. I deal with the TMJ stiffness and pain almost every morning from "Clenching" my teeth, I used to wear a night guard, but they haven't figure on how to make one that doesn't climb into the top of my gums, causing me to have a TN attack. (My teeth aren't straight and so they have to mold it to fit, but it never does.

Next, the pain in my neck, and shoulder blades, and back are unreal. I have had to deal with degenerative disc disease in my C-Spine, I have a C5-C6 herniated disc, which isn't apparently large enough to operate... don't think I would have the operation unless I couldn't use my arms/hands anyways, and My trapezius muscles in my back go into spasm where I actully have had to get injections on both sides to relaz the muscle and work it out.

:(

Has anyone done a corellation of TN with another nerve or muscle disorder? Seems fitting.