Ihave been astounded in the last few weeks/months with the amount of new members that have joined the group who state on their profile that they are Atypical/Type ll Trigeminal Neuralgia. If you remember the profile questions ask this nowadays.
I have no ax to grind here, I am Classic/Type l Trigeminal Neuralgia. But I do write to quite a few members and always read the profile of every new member so I can assure you this is true.
I always thought that Type ll was rarer than Classic, please someone correct me if I am wrong. So therefore you would imagine more members would be Classic with the appropriate percentage therefore Atypical/Type ll using the laws of average.
My question is WHY?
is it
a) because Gloria, Stef and Red have written so much and tried so very hard to bring attention to this condition to benefit you all.
b) the percentages are higher than previously thought
c) people are misdiagnosed or classify themselves mistakenly on the form
I like to think it is the first, I have to tell you these guys have worked so hard for everyone in the group. But you may know the answer.
Please let us know, it's a phenomenon I cannot get to the bottom of rationally. I dare say some may think it unimportant, I beg to differ as we need to know why members are drawn to the site so help can be tailored for all.
Thank you for reading this if you are still awake!!
Hi, Jackie... I'm "sorta" back from vacation. Though you have kindly mentioned my name as a part of the "causes" of our membership growth, I thought I would comment anyway.
(a) The writing that Stef, Gloria, and I have been doing is bound to have had some impact on our site statistics for ATN patients. Google goes where the words are, and we've been adding a lot of words. Moreover, the many people who have contributed to Stef's ATN group have ALSO added words. So in a mechanical sense, the site is simply "attracting" more ATN traffic. There's no particular personal virtue in that, of course. But hopefully we can turn it into something positive for ATN patients.
(b) and (c) I have absolutely no doubt that ATN statistics are higher than previously thought by the medical profession. So are TN (Type I) statistics. Two recent epidemiology studies in England and Holland have found incidence rates at least three to five times higher than indicated from the Rochester NY studies of the early 1980s.
(c) I also have no doubt that a substantial number of people diagnosed with TMJ Disorder don't have any such thing. They instead have some form of facial neuropathic pain that an ill-trained dentist has mis-diagnosed, failing to recognize that their own financial self interest has clouded their thinking about facial pain (Dentists treat TMJ. They do NOT treat or get paid for neurological pain). Likewise the neurology training of dentists is painfully limited in depth and breadth (no pun intended).
(c) again: People are perhaps encouraged by the prevailing medical vocabulary to misdiagnose or label themselves. Anybody with so-called Atypical Facial Pain should be looking for a new care provider, because AFP is not a legitimate or valid medical entity. Likewise, the distinction between TN and "trigeminal neuropathic pain" is coming to be seen as a mostly artificial one. Trigeminal "Neuralgia" implies a nerve inflammation. "Neuropathy" implies a much-different mechanism in physical damage to the nerve. But many of the characteristics of classic or Type I TN are those of neuropathy rather than neuralgia. Specifically, TN sometimes goes away "instantly" after an MVD to relieve vascular compressions -- and an inflammation process shouldn't do that.
Thus, I'd venture the surmise that we're dealing with all of the above. The challenge, of course, is to turn this ground swell into something that improves the lives and well being of patients. Just sharing the journey helps. But what we need in the larger world is more people engaged in kicking ass and taking names in the medical community and NIH, to shame the professionals into taking this class of disorders seriously enough to throw research money at it. The recent discovery of a gene that directly affects neuropathic pain may be one step in that direction.
I just joined this site today and was diagnosed as TN back in May I believe. The pain had gotten so bad that I thought it had something to do with the polyps growing in my left nasal passageway and went for relief before my limited sinus surgery to remove the polyps. My surgery was June 27 of 2011 and during the recovery I had had no further incidences of the nerve pain. Last week it flared up with a vengeance and the nerve endings were so bad I could not stop crying or screaming. I was also apparently having other nerve issues at the same time and I felt one on back of neck coming out of its banks it was so huge. I called the chiropractor for immediate treatment to align my body. During the second treatment I had the nerve endings in my face lasered to make the pain tolerable; I really could not function at all until this was done. Yesterday I had third treatment; my body is better but my left face is attacked at the jaw, the gumlines, and the ear…all on left side. I was dxed by regular doc back in May…but I chose chiropractic because I was afraid I was going to be a cripple if my body was not aligned correctly. My pain is much more manageable but to answer your question…my take is this…atypical is the most extreme of pain known to the human race from what I have read…do you think this is why we flock for answers and support? Also my pain comes in waves…
I do not understand why anyone wants to make an ‘issue’ out of both diseases…they are BOTH horrible…who cares what it is really called. I know there is NO CURE. There are only treatments. I have bi-lateral ATN,(very rare) TMJ, Occipital Neur. for the past 9 years! I’ve gone thru 2 Gamma Knife procedures and 2 MVD procedures = NOTHING has changed the excruciating pain I feel 24/7. The TMJ gives me earaches 100% of the time too. I am so tired of suffering, so tired of taking pills and looking for other treatments. It’s time to accept al of the above and try to live a semi-normal life. The next stage is to have a pain stimulator inserted in my neck for the ATN pain, etc. Oh well…Blessed be to one and all . I wish that all of you find the one treatment that finally takes away your pain…I truly do.
to Trudi…I have found that since the chiropractor lasered the nerve endings on my face, the pain is more tolerable; plus keeping my body in alignment is key to keeping the nerves in place and I am finding that is reducing some of the pain…at least I am not crying and screaming nonstop anymore…he took care of that really quickly!
Jackie said:
Hi Trudi
thank you for your reply, I am interested to read every opinion. Whilst it may seem nit picking and issue making it is actually vital that both conditions are treated properly and Dr's are well educated in the differences. A good Dr know's that it is not a good idea to give an MVD to certain ATN patients and different medication is also required in the treatment of both conditions. And so on. If as we are told TN is more "common " than ATN why are more people being drawn to the site with ATN at the moment. It is not logical on the law of averages. I am wondering if it is because of the amount of words generated as Red says or what? I don't know. What I do know is that you are clearly in the most dreadful pain and I hope you may find some relief very soon. Jackie Trudi McDonald said:
I do not understand why anyone wants to make an 'issue' out of both diseases...they are BOTH horrible..who cares what it is really called. I know there is NO CURE. There are only treatments. I have bi-lateral ATN,(very rare) TMJ, Occipital Neur. for the past 9 years! I've gone thru 2 Gamma Knife procedures and 2 MVD procedures = NOTHING has changed the excruciating pain I feel 24/7. The TMJ gives me earaches 100% of the time too. I am so tired of suffering, so tired of taking pills and looking for other treatments. It's time to accept al of the above and try to live a semi-normal life. The next stage is to have a pain stimulator inserted in my neck for the ATN pain, etc. Oh well..Blessed be to one and all . I wish that all of you find the one treatment that finally takes away your pain...I truly do.
The reason I joined “Living with TN” is first all is to not be alone with this disease and learn the power of perspective of people and their singular testimony of what worked or didn’t for them.
It is very frightening and devastating to go this journey alone. I beleive that we don’t have to cure the condition to have victory over it. Instead we can learn to manage the disease and find all resourses available to each one us.
A social support group is vital to patient recovery and I thank God for this website so that we all can filter information, focus on what we need to learn at that moment and benefit in your pain control and mental healing as well.
I meet a new Dentist for the first time the other day. "Hi I'm such and such, How are you? etc."
Then:
Me: Well, are you familiar with TN?
Since joining our group,Living with TN is part of my daily conversation.
Whenever I hear a conversation by someone in the medical world, I bring up TN/ATN. The information we gather here, allows us a provocative, compassionate and informative part of any TN conversation. Most medical people are genuinely interested in our experience and usually, we know a lot more about it than they do'
I like your observation regarding "managing vs victory"
Manage on !
SFBill
p.s. to Jackie. How about ATN vs TN at the next Wimbledon. The winner gets top billing.
Joy to everyone today. I'm feeling good and I share it with all of you.
I meet a new dentist this week too and he said I was the first person that he meet that had TN. However, when he did the cold test on my teeth for sensitivity, I almost had a heart attack, it hurt so bad. I wanted to leave, but I had dental work that needed to be done. By the way, I read that when we get local anesthetics for numbing that TN patients should get Mepivacaine or Carbocaine injected into the nerve instead, because the Epinephrine can trigger nerve pain. Just a thought.
Right on, I'm glad that you are having a wonderful day, God knows we need more of them......
MHKim
SF Bill said:
To zentn
I meet a new Dentist for the first time the other day. "Hi I'm such and such, How are you? etc."
Then:
Me: Well, are you familiar with TN?
Since joining our group,Living with TN is part of my daily conversation.
Whenever I hear a conversation by someone in the medical world, I bring up TN/ATN. The information we gather here, allows us a provocative, compassionate and informative part of any TN conversation. Most medical people are genuinely interested in our experience and usually, we know a lot more about it than they do'
I like your observation regarding "managing vs victory"
Manage on !
SFBill
p.s. to Jackie. How about ATN vs TN at the next Wimbledon. The winner gets top billing.
Joy to everyone today. I'm feeling good and I share it with all of you.
No worries, Joanna. Nice to have independent confirmation (or when warranted contradiction) of my instincts.
I'll ask our site admin about the keyword referrals and get back to you.
One immediate observation, though: the domain www.livingwithtn.org now registers 52,400 links at google, of which 4,500 are pertinent to Atypical Trigeminal Neuralgia. The comparable link count at the TN Association is 4,730,000 on their domain name, but only 1,140 on ATN. So our ATN resources and blogs are being seen. Big time!
Thanks Jackie! My friend constantly reminds me that she is a statistical anamoly. I had no intention of frightening anybody! I am always encouraged when I read the many stories of success regarding MVD surgery and more!
Jackie said:
Sorry, I just wanted to say to any members reading your post that the unfortunate stroke your friend suffered during surgery is a rare side effect. Medscape quote a 1%-5% occurrence. I cannot bear any op waiters to be terrified. It can and does happen but your friend was extremely unfortunate. She would be welcome here if ever she wanted to join. I am glad you have each. Johanna Smith said:
Hi Jackie-
I joined this site about 1 year ago as when I googled TN it popped up. I was diagnosed with TN Type 2 in 2008 by a neurosurgeon in Seattle, WA. I do have nerve compression by a blood vessel or vascular loop from what the specialists I have seen saw on my MRI. However, I don't really expericience the lightning strike or shock like pain of Type1 patient, at least it doesn't feel like that- I have constant, unending burning, vice grip, feeling like my face is exploding pain. So, when I got to this site and started reading and found the descriptions of those who have been diagnosed with ATN I felt right at home as at the time there wasn't a whole lot of information on ATN.
I have a friend where I live who is Type1. I was given her name by a mutual friend and called her despite the fact that I didn't know her at all. Since, we talk a lot about our pain. The differences between the type of pain we describe to each other are huge. She doesn't have the constant pain that I do, but does experience the schock like pain of short duration many many times per day. Unfortunately, and MVD and Rhizomoty have failed and she is also permanently disabled from the MVD surgery (stroke during surgery and uncurable ear damage which has led to an inability to walk without assistance due to balance loss).
Long story to get to a short point.. I think that perhaps the influx of ATN folks on the site may be due to all three reasons you propose.. 1. Like me, I am sure most are so desperate to find a description/diagnosis for their pain that when they see or read somebody describe exactly how they feel they intrinsically know that that is their diagnosis without confirmation from a doctor, probably due to the lack of knowledge of ATN in the medical world.
2. Like many ailments which once went undiagnosed and were thought to be all in one's head, fibromyalgia is a good example, perhaps there is finally a movement underway in which ATN is being considered as a valid diagnosis more often than not. Granted, I went misdiagnosed with TMJ for 12 years before finally getting an MRI and a proper diagnosis and I still grapple with neurologists who have never heard of it (obviously not a TN specialist).
3. Like you mentioned, folks like Stef, Gloria and Red have put forth an immense amount of effort to bring more information on ATN to the site. I wonder which keywords are now directing folks to the site in search of info on TN. I think it makes sense that with more text and discussion on the site regarding ATN that many more people are finding the site through keyword searches.
I think I am perhaps echoing some of what Red wrote (oops, just read his post). That's what comes to my mind when I read your post. I am extremely grateful that this site is available to all types of TN sufferers and am also grateful for the continued research and information provided to all of us regarding ATN and all types of TN and other neuralgias. Thanks. Johanna
