Diagnosis, Why So Long For Some Members?

General General TN & GPN (Old Site)
1

As I read many profiles on here and correspond with so many I never cease to be stunned by how many report there are that a diagnosis can take so very long. I even read today (and not for the first time!!) that a member had been told she had a nervous breakdown and was prescribed Valium. It's quite disgusting as I am sure you will all agree.

I do understand that ATN is more complex to diagnose than TN. I was lucky, after dismal by my Dentist that there was nothing wrong with me, I presented at ER(A&E) and diagnosed within minutes, I cannot complain on a personal basis.

What I want to know is if I can download and have, free programs to guide me to what my pain may be and receive within seconds the possibility of TN, why the heck does it take some Dr's up to 20 years. I cannot recall the last time I visited a GP and he/she was not sat in front of a PC! And I live in a small country town. My GP and I often look up alternative meds together on screen. Surely we are not unique?

2

Jackie, you and your GP are not unique, though you are certainly rare. Medical doctors have been among the last to embrace the role of computers and information systems as force multipliers and pattern recognizers in modern information processing. The field of Medical Informatics was supposed to help change that reality, beginning about 20 years ago -- but one needn't go far to see examples which confirm that General Practitioners still receive a woefully inadequate introduction to facial neurological and neuropathic pain. And dentists are even worse.

When we assembled the National Patient Registry at the TN Association, we learned that the AVERAGE facial pain patient (in the late 1990s) sees six different practitioners before receiving a diagnosis of trigeminal neuralgia. Likewise, the mechanisms and prevalence of atypical TN is still not well understood or documented. The following short extract from TNA's Newswire illustrates this reality for today:

Pain Education in Medical Schools Lacking

Knowledgeable and compassionate care regarding pain is a core responsibility of health professionals, and this also is associated with better medical outcomes, improved quality of life, and lower healthcare costs. However, according to a new study published in the December edition of the Journal of Pain, even though pain is a most common reason that people seek medical care, education on pain at North American medical schools is relatively minimal, variable, and often fragmentary.
Investigators from the Johns Hopkins University Pain Curriculum Development Team examined curricula at 117 medical schools in the United States and Canada during 2009 and 2010. The authors performed a systematic review analyzing curricular emphasis on topics such as pediatric and geriatric pain, neuropathic pain, cancer pain, pain neurobiology. and pharmacological pain management.
Results showed that a majority of medical schools, 80%, claim they are teaching one or more core topics in pain, but many schools are not reporting any pain teaching at all and a surprisingly large number of schools devote less than 10 hours to pain education. Among Canadian medical schools, 92% require some pain education, and the median hours of instruction on pain topics at Canadian schools was twice the U.S. median.
Still, many topics included in the International Association for the Study of Pain (IASP) core curriculum received little or no coverage. The authors found that cancer pain, pediatric pain, and geriatric pain are essentially unaddressed by the vast majority of medical schools. Furthermore, the benefits/risks of opioid treatment and the medico-legal implications of pain treatment were distinctly underrepresented in medical curricula. There were no correlations between the types of pain education offered and school characteristics (eg, private vs public).
The authors conclude:
“Taken as a whole, these data bring to light glaring discrepancies between the prevalence of pain in society and the time dedicated to educating future physicians about pain in medical school. Given that the twin dangers of pain undertreatment and the abuse of pain-active medications are among our society’s deepest public health concerns, pain medicine does not receive the attention that it deserves in medical education. There are inarguable links between the undertreatment and the maltreatment of pain and the lackluster state of pain education in medicine. It is likely that unless opinion leaders and the next generation of physicians become aware both of the importance of conscientious pain management and the dangerous deficits in pain education, the crisis in pain care and resultant deaths from opioid abuse will only spiral upwards. A more organized and formal delivery of pain education is likely to be a principal catalyst in the sea change required to rectify the current shortcomings of pain care.”

This article serves to reinforce my motivation for probing the patient database here at Living With TN, to try to cast additional light on who our members are and how they come to experience facial pain. From my preliminary work I am already convinced of the following important realities which fly in the face of what little is commonly taught in medical and dental schools about chronic trigeminal neurological pain:
1. About a quarter to a third of our members first experience chronic face pain shortly after a dental extraction, root canal, TMJ treatment, sinus surgery, or blunt force facial trauma. The association of facial pain and root canal is widely denied by dentists. It is time their education was improved to reveal that this denial is a legalistic self-delusion conveniently assumed to avoid litigation.
2. Our patient population is younger than medical literature suggests: over half of 1400 or so members for whom I could fully trace age are 45 years or younger, and over 200 of us are less than 30 years old. Likewise, we do not see the skewing of pain statistics toward older people who are retired. The prevalent time of first pain emergence is 30 to 45, during the peak earning years.
I hope in the coming days to expand and refine these findings by inviting members to update their personal profile data in their profile pages. When we have updated this database, I will seek venues for publication of findings which have strong implications for treatment standards and physician/dentist/endodontist education. And of course, I will web-publish what I find in our Face Pain Info pages.
Keep on truckin, Jackie. We win a lot of our battles with a hidebound and insensitive medical profession by being better informed than they are -- and one day at a time.
Go in Peace and Power
3

Well ain't that a bunch of #$^K*L/.. .....you get the idea. About the teaching in medical schools. Blah!!

4

Red, it beggars belief it really does. I hardly dare say it but there is also a distinct difference in how UK Dr's and US Dr's handle prescribing. I have had many letters about the distress of SOME of my friends in the US on attitudes of Dr's to prescribing. I have some friends here in the UK in a Fybromyalgia group. I asked them if they struggle to gain pain relief medications and they were astounded. It frightens me that some of my friends on here have such a fight to gain some meaningful quality of life. Obviously no offence is meant, it is just observation on my part. I have no actual personal experience. It is enough to make my heart weep. I am even more impressed at the work you do here to try to educate us and the people paid a pretty good salary to help us also.

Min you are of course correct, even though I cannot find that word in my dictionary I know exactly what it means!

5

I know I lucked out in the ER that day, no doubt about it. Especially after reading so many of the stories on here. The thing is that you are rare on the computer thing as well as discussing alternatives. I think that my experience is that smaller practices often do not invest in the expensive computer networking and software packages that are required in order to have computers in each of the examining rooms.... My doctor actually JUST UPGRADED to computers in every room..... I know, dark ages.

I also think that often TN is the "rule out" condition. That is, let's make sure it is something else because there is no real test for TN, so therefore we cannot prove or disprove that condition. I agree with Red too in that so many of us do not fit the "typical" profile... whatever that is.

6

It’s unbeleivable to me about the Pc’s and Dr’s , mine has had them for about 15 years! I understand the difficulties with untypical profiles. It does though make life so much harder for sufferers.

7

Wow, Red! Thanks for the continued education :-) It's true…the doctors I saw in the beginning did not want to address living with this pain successfully, it felt more like a science experiment and I was on the table!! I had to refuse to take Tegretol before another med was given. My eyes were yellowing as well as my skin. If the neurologist had checked my blood work, he would've seen it was too much for me. My husband researched and found out that with Tegretol, blood draws are necessary about every 3 months. I don't see him anymore.

After going to Portland, OR to have 2 GKs, and then the MVD in Baltimore a year later, I found a pain specialist in my area. Both neurosurgeons in Portland and Baltimore said that I had a pain problem and needed to seek out a good pain specialist to care for me if the GK or MVD did not prove 100% effective. THEY insisted that I not let the pain get out of control and work until I find the right regimen to have a good quality of life. The brain surgeons took good care of me!

Now I see Dr. Luckwitz who practices in Salmon Creek. He is young and so amazing with his ability to "tweak" medicine treatments so I have a great quality of life and very few painful attacks. And, the best part is he works in the hospital, so co-pays are not necessary with our insurance! My friend likes her neurologist in our area and she gets the Botox injections for her violent migraines in the neurologist's office…she pays $600.00 every three months!! It took me a good 4 1/2 years to find the perfect combo of meds and self-care to do well with this TN. We just have to be patient warriors in our fight for a good quality of life. I'm so thankful for all of my friends here who GET this problem and are here to help. Many, many blessings to all of you!

8

It is remarkable and disheartening to hear that others are still waiting so long for diagnoses. It took me 6 months and 6 different doctors to finally get a diagnosis, when I was in my 20's. I even recently saw a neurologist, for a different condition, who when I told him about my TN, said, "Oh that's probably not what it was!" I am hoping that my new medical team will take it more seriously!

9

Like many others I was diagnosed at A&E through the doctor who used the PC. My Nuero when I met him was impressed and pleased when I told him this. Hopefully more doctors are becoming more TN aware. My only complaint is the A&E doctor did not discuss the condition with me, gave me the prescription and told me to read it up on the internet, the first thing I read was it was a suicide disease, I was horrified. I had to wait until the Monday for my GP to reassure me that this is no longer the case.

10

The term "suicide disease" is an unfortunate and inflated metaphor that I'd like to see removed from physician and patient vocabulary. It's origin is largely attributable to the information packet mailed out by the TN Association in years past, and in a television segment in which their CEO participated a couple of years ago. For whatever this is worth, my personal perception is that Living With TN is doing a lot more to support patients than TNA itself these days. They've gotten a bit morally lost in their pursuit of money, and have badly let down patients in the support groups and on-line forums that they've sponsored.

Regards and best,

Red