What is the longest period of time in denial?

I find it very difficult to accept that I have TN. Probably because it is mostly TN1. I keep thinking this is all a figment of my imagination and that having surgery is ridiculous for something that I don’t even suffer fro anymore. How long does it take to sink in??? Not including the periods of attacks.

There's no golden rule in things like this, Phoebe. Either you will process the evidence in front of your eyes (or the pain "behind" them, for some TN patients), or you won't. In a long life of volunteering as a mentor and teacher of young adults, I've learned not to underestimate the power of emotional denial as a destructive influence in life. If you feel compromised or damaged by what you are doing emotionally, then I'd advise you to deepen your counseling relationship with a competent therapist. Every journey of hope and progress begins with a single step: the recognition that there is a problem of your own making, which you need to solve in order to live better.

There is a quote from Shakespeare that I have always regarded as quite profound: "There is nothing either good nor bad, but thinking makes it so."

Go in Peace and Power

Red

Its an interesting question Phoebe. I am in remission so in my mind is hope that it will never come back. I dont want anyone to reply saying it will, because i want to hold on to that hope.

I have hope that it can be managed by medication and I can still live a contented life.

I also have hope that if it does return it will never get worse, again I dont want anyone saying it will. .

If all the above fail, then that will be the time I will face up to having TN and reach out for more permanent solutions.

I like your way of thinkin Elstep. Deal with whats in front of you at the time it's in front of you. Because nerves can settle down. That's what my neuro told me at the start. They can get better and go in remission. So why borrow trouble when there may be....none!!! THANKS Elstep!!

Peace, Min

Hi Phoebe, I am in denial also. Diagnosed Dec. 14 2011. MRI clear. I go back to Neurologist this week. Last week I went back to GP and he thinks it is TN. I went to my dentist for extra x-rays. All clear. I went back to my ENT who was scheduled to do a sinuplasty on my maxillary ostium which has been postponed. Cause???? I feel like I am grabbing at straws in hope of a misdiagnoses. I want to make sure. Denial is a part of it for me and I am not there yet.

Pheobe,

I've had TN for about 6 yrs now and it's gone up and down and sideways and even been in full remission for months at a time. I fully accepted that have TN right away. The pain was pretty hard to not accept.

That said I have managed to have a pretty constant optimism that I'll wake up one morning and be in remission again. I'm not entirely sure how I manage that but I think due to the changes in pain level and location I think maybe it will keep changing and one day be gone again if even for a bit.

Hello Kimburlee.

That's it in a nutshell. All the negative tests for this dreaded affliction. Red, how does one go about finding out what is in the works as far as tests go to make the final, real, positive, absolute, not going nuts diagnosis. You know, besides the doctor asking questions kind of exam?

kimburlee said:

Hi Phoebe, I am in denial also. Diagnosed Dec. 14 2011. MRI clear. I go back to Neurologist this week. Last week I went back to GP and he thinks it is TN. I went to my dentist for extra x-rays. All clear. I went back to my ENT who was scheduled to do a sinuplasty on my maxillary ostium which has been postponed. Cause???? I feel like I am grabbing at straws in hope of a misdiagnoses. I want to make sure. Denial is a part of it for me and I am not there yet.

Phoebe, there are no definitive or absolute tests that can diagnose Trigeminal Neuralgia in either of its variants (Typical and Atypical), or absolutely distinguish it from trigeminal neuropathic pain of other types. The presentation of your pain (your patterns and the character of pain) combined with any history of blunt force trauma, surgery, or lingering pain following dental work, are the main factors that play in the diagnosis. Your reactions to medications like Tegretol can also be a confirming factor in diagnosis. Presence of structural features such as vascular loops, aneurysms, AVM, cyst, MS plaques, or benign tumor can be confirmed by high resolution MRI and also contribute to diagnosis or treatment plan decisions.

If you will review for me the patterns of your pain and how it first emerged, I may suggest the diagnosis that seems best to fit what you tell me, based on the 16 years I've spent talking with patients and doctors. But you will need to be confirm any impression I offer, by consultation with a neurologist or neurosurgeon.

Go in Peace and Power

Red

Phoebe... Red is right. Not that I need to confirm it because he is the research anaylst around here. But every doctor I have spoken to, and all literature I have read says there is no single test, no test in fact, that can confirm this condition. My GP was not in any rush to get an MRI, because he said that it was not really needed, though it would confirm something touching the nerve. The ER doctor told me I should have one done in the next six months. I have not been up to OHSU yet so we shall see what the expert says.

That is one of the myriad of reasons this condition bites. It's not like cancer, where you see a tumor and know. At least not now. I believe that as medical science advances, they will find something in common or something that we can see that will show -- maybe a gene, or a tiny abnormality somewhere, who knows. But for now, we don't have that luxury. Seems to me the Mayo Clinic diagnosed you with it and they are one of the best places you could go for a confusing medical problem. I think this is one case where you have to trust what you are being told, even if you don't want to........

Hi, Phoebe—My heart goes out to you as you're asking this question about denial. I'm 2 months shy of a 10 year mark with this problem. And, it was just a month ago that I was able to "accept" it and embrace it as a gift (then I found this site!).

Seems denial is what I've used since childhood to zoom me past the horrible present I was living in. The story is heart-wrenching, but my four brothers and I would ride a denial train and dream of being well cared for, having food to eat and clothing that fit us. Living in severe poverty as a child bites, and so does having parents who are either alcoholic or drug abusers. When you mix in the step parents who hate you behind your parents' back and act like they like you when a parent is around it can get very ugly. Denial worked well for me and my siblings, but it did not fit so well with this TN disease/disorder. When my MRI did not show a vessel on the nerve, it played right into my denial thinking. Then, after 2 Gamma Knifes failing and an MVD that took care of the "I want to die, stabbing pain" but could not take care of the Gamma Knife ramifications, I began seeing a nurse practitioner at the pain clinic who spent a lot of time with me every 3 months or so helping me to accept this…one step at a time. She recommended the book, Managing pain before it manages you, as well as books by Joni Ericson-Tada (who is wheelchair bound), etc. She said that pain patients often think if they accept this (rather than fighting it) they are done in for and will fall down a dark abyss never to return to a happy life again.

But, she said, acceptance is far beyond that…it's agreeing with life that this moment IS something we are destined to handle, and handle well. It's coming to a place of peace and therefore, power to command our days/lives around the annoyance and be our very best in this moment. Denial was a safe place for me but Life was calling me to a higher place. A place of peace like I've never known before.

Acceptance of this disease has brought such an adoration for my heavenly Father, and His plans, that I can hardly put it into words. If He is in control, and allowing this is part of the plan (to grow me up; to cause compassion to rise in my heart; to give me an understanding of physical human suffering) then I WILL accept this with one hand and with the other hand reach with a heart FULL of faith that ONE DAY I will NOT have this pain...it will be completely healed.

Maybe this sounds goofy to you, but for me, I've never know such a deep peace of mind and body before in my life. And, I've never been so convinced that ONE DAY I will wake up and this WILL NOT be here. Give yourself time, there is no rush. This is a horrible, disabling disorder that will take time (in some cases) to accept. Know that you are not alone and this site is one place that you can find friends that understand completely what you're going through. You'll find the acceptance for what you're going through…in the right time and in a way that fits you perfectly.

Take Care,

LyndaS

LyndaS, I don't think it sounds goofy at all. I hope I can come to that place someday. Right now I am rotating between denial and extreme anger that God would allow me to be afflicted with this.

Lisa — Thanks for your kind words about my not sounding goofy :-) My heart took 10 years of work, reflection, honesty, work, etc., etc. to come to this place of grace. I knew that I wanted to be in this place of acceptance, but honestly, I thought I was being punished and this was a wrong view towards this problem. Anger (and denial) is very much the beginning of the grief process and through the process I kept returning to anger. Honesty towards this was so important to me that regardless of what others' thought about it, anger needed to be expressed (no emotion can be buried alive!) to get it out and find that beneath the anger lay a sea of hurt. The grief process bests describes our road to acceptance, I believe, because this disorder encompasses so much loss…and, quite frankly, loss hurts. Remember our path is allowed and sifted through His hands of love. Others have a much harder path than we, and others have it easier. He trusts us to handle this… be kind to yourself and give your heart the time and space it needs to walk through this…

Lisa (iamrite) said:

LyndaS, I don't think it sounds goofy at all. I hope I can come to that place someday. Right now I am rotating between denial and extreme anger that God would allow me to be afflicted with this.

Have you read the book by Kay Arthur, "Refined as Silver"? She authors Precept Bible Studies which are like taking a college course…it answers my curiosity about the Word. This book is at our library here in Vancouver, WA, it's so worth the read.

Take Care,

LyndaS

Lisa (iamrite) said:

LyndaS, I don't think it sounds goofy at all. I hope I can come to that place someday. Right now I am rotating between denial and extreme anger that God would allow me to be afflicted with this.

Sweet replies to a good discussion, Phoebe!

When/If confronted in certain situations, regardless of eyewitnesses and pictures, I may still deny it.

Something happened to me at about 5:43pm on January 15, 2007.

Having pictures, eyewitnesses, and disabling treatments; I have an acceptance concerning the gifts of Living with trigeminal.

Recovery humor includes a river in Egypt. bob:)

I am confused, again.

To all the suffering people of years or more: Are you all individuals who have had surgeries to fix the pain and the procedures did not work? Are you individuals who opted not to take advantage of the procedures or had financial issues that did not allow you to take advantage? I am just wondering because I want to know if I am hopping on the surgical intervention train too quickly?

Phoebe,

When the sandwich dropped from my mouth, I was at work. 50 year old male licensed nursing assistants aren't that common either.

Since Carbatrol and toxic epidermal necrolysis, (TEN) I have had one open neuro, (MVD) two radiosurgeries, (SRS) and always a mix of medication that I can tolerate, well, those seconds that seem like hours still grab my attention.

I have received marvelous healthcare from medical professionals. Preferring to call them my best specialist friends, they are doing the best of what is available.

If medication(s) had worked, I might be a 55 year old male nursing assistant. bob

Phoebe, to try to answer your last question: the site membership are a mixture of people -- but most of those who frequent this place have had difficulty with getting effective treatment. Most neurosurgeons and neurologists will resist referring a patient for surgical intervention, unless (a) medication has not been effective or is no longer effective, (b) there have been indications of Typical TN rather than Atypical TN as a major or dominant element of face pain, and (c) there are NO indications of a discrete blunt force trauma to the face. If all of those three conditions do not apply, then most neurosurgeons would recognize a lower likelihood for positive surgical outcomes.

Not all patients accept these conditions without protest. I've known a number of younger people who have insisted quite aggressively on having an MVD when their surgeons thought they should wait longer to find a better medication combination. The outcomes for those patients have been mixed overall -- not zero, but also not as good as for "classic" TN that emerges without a discrete incident of accident or dental surgery damage.

Regards, Red

Love your positive thoughts, Min. Thanks!

~ Vicki

Min C said:

I like your way of thinkin Elstep. Deal with whats in front of you at the time it's in front of you. Because nerves can settle down. That's what my neuro told me at the start. They can get better and go in remission. So why borrow trouble when there may be....none!!! THANKS Elstep!!

Peace, Min

I admire your honesty, Lisa. I go through a whole bucket load of emotions, too....from peace and acceptance to anger and despair. Nice to know I'm not alone.



Lisa (iamrite) said:

LyndaS, I don't think it sounds goofy at all. I hope I can come to that place someday. Right now I am rotating between denial and extreme anger that God would allow me to be afflicted with this.

Thanks for the inspiration, Linda. Reading your words gave me chills. lol. Thanks also for sharing about your past and being so vulnerable. I can definitely learn a few things from you. ;)

LyndaS said:

Hi, Phoebe—My heart goes out to you as you're asking this question about denial. I'm 2 months shy of a 10 year mark with this problem. And, it was just a month ago that I was able to "accept" it and embrace it as a gift (then I found this site!).

Seems denial is what I've used since childhood to zoom me past the horrible present I was living in. The story is heart-wrenching, but my four brothers and I would ride a denial train and dream of being well cared for, having food to eat and clothing that fit us. Living in severe poverty as a child bites, and so does having parents who are either alcoholic or drug abusers. When you mix in the step parents who hate you behind your parents' back and act like they like you when a parent is around it can get very ugly. Denial worked well for me and my siblings, but it did not fit so well with this TN disease/disorder. When my MRI did not show a vessel on the nerve, it played right into my denial thinking. Then, after 2 Gamma Knifes failing and an MVD that took care of the "I want to die, stabbing pain" but could not take care of the Gamma Knife ramifications, I began seeing a nurse practitioner at the pain clinic who spent a lot of time with me every 3 months or so helping me to accept this…one step at a time. She recommended the book, Managing pain before it manages you, as well as books by Joni Ericson-Tada (who is wheelchair bound), etc. She said that pain patients often think if they accept this (rather than fighting it) they are done in for and will fall down a dark abyss never to return to a happy life again.

But, she said, acceptance is far beyond that…it's agreeing with life that this moment IS something we are destined to handle, and handle well. It's coming to a place of peace and therefore, power to command our days/lives around the annoyance and be our very best in this moment. Denial was a safe place for me but Life was calling me to a higher place. A place of peace like I've never known before.

Acceptance of this disease has brought such an adoration for my heavenly Father, and His plans, that I can hardly put it into words. If He is in control, and allowing this is part of the plan (to grow me up; to cause compassion to rise in my heart; to give me an understanding of physical human suffering) then I WILL accept this with one hand and with the other hand reach with a heart FULL of faith that ONE DAY I will NOT have this pain...it will be completely healed.

Maybe this sounds goofy to you, but for me, I've never know such a deep peace of mind and body before in my life. And, I've never been so convinced that ONE DAY I will wake up and this WILL NOT be here. Give yourself time, there is no rush. This is a horrible, disabling disorder that will take time (in some cases) to accept. Know that you are not alone and this site is one place that you can find friends that understand completely what you're going through. You'll find the acceptance for what you're going through…in the right time and in a way that fits you perfectly.

Take Care,

LyndaS