Hi Red,
I have AO. Regarding Amitriptyline, I hated it. Side effects, mostly "brain fog." I tried other meds in the same family but gave up. Yet, if someone had said that stick with it, side effects will diminish, the pain will resolve, etc...then, I would have been more encouraged to hang in. Kind of amazing that many of us give up, so to speak, on something relatively non intrusive. But, many of us loose faith in the dentist who does not even consider neuropathic pain as an option and the others do not really convey geniune confidence. My review of the literature suggests that this class of medication is most likely to be effective if provided asap and when the dentist has not complicated matters with trying dental procedures. For me, three years later, I would still go back to this med if I felt that resolution was possible.
AO is rare. That's the reality we live with. The consequence is less research and delayed diagnosis.
Not every one has a Dr. Graff-Radford living near by. I called him at some point. Frankly, I can not recall the discussion but I think that I would have packed my bags if he could have convinced me that he had something more than pain management. I have had the same discussion with two other practitioners who are regarded as leaders in the field (Okeson and Gremillion). At a great risk of speaking for them, my interpretation is that our patient population is stuck with pain management, until there is a scientific break through.
Regarding the diagnostic classification of AO, it seems better than "atypical tn." And as much as a garbage bag it may be, there are discrete symptoms.
You are probably familiar with many of the references...out of my own curiousity, I have tried to retrieve a few in pdf form, rather than the abstract.
http://jada.ada.org/cgi/reprint/140/2/223
There is another one by Markman but I can no longer get the pdf for free....
http://pubget.com/site/search/18856179?q=pmid%3A18856179
If you have a good reference that I can get on line, I would appreciate it. I need it to show to others when the issue comes up. For instance, I recently sent an herbalist the Markman reference thinking that it was the full text rather than the abstract. Something that provides an expansive description of the diagnosis.
At this time, Lyrica is the primary form of treatment.
The pain management doctor that I see offered to try blocks. I let him try one right into the TN nerve of my neck. Nada. His thought is that once the pathway could be identified then he could consider a form of surgery that is basically destructive in the service of blocking the signal. I opted out. Years later another patient agreed to let him do exploratory blocks of all five possible pathways. Nada for him too..i.e, the injection of lidocaine failed to numb.
Richard A. "Red" Lawhern said:
Dear Tomey,
I received your separate email asking for my thoughts on this posting. Thanks for drawing it to my attention.
I am one of those who finds the disorder called "atypical odontalgia" to be more than a little problematic. It seems to me that this categorization is largely a label for "be damned if I know" rather than a valid diagnosis of a medically discrete disorder. For one fairly balanced review of the disorder, you might try:
http://facial-neuralgia.org/conditions/ao.htm
In the interests of fair disclosure, I am a past minor contributor to Facial Neuralgia.org, but not of this particular listing there.
Another thing bothers me about the phrasing of your description of the MRI results: there is no such thing (as far as I know from 15 years of working with this branch of medical literature) as a "strong" nerve compression, as contrasted to any other kind. Likewise, even the best MRI (1-mm thin-slice with post-procedural 3-D processing, performed both with and without contrast agent), frequently does NOT reveal compressions that are later found during MVD surgery. So while MRI is helpful in confirming compressions, it is not as helpful in eliminating them as a source of facial pain.
Generally speaking, I think a lot of neurologists and no few surgeons would ask you if you've been tried on any of the tri-cyclic antidepressant meds, before you are recommended for surgery. This class of medications has an established record of effectiveness in treating pain for many patients who deal with atypical forms of facial neuropathy or neuralgia -- the sort best described as constant burning/aching/grinding pain (called "TN Type 2" pain) rather than bursts of sudden electric-shock jabs (called "TN Type 1" or "typical" TN). Amitriptyline is specifically mentioned by some practitioners, among them Dr. Graff-Radford, who is probably the most prominent proponent of Atypical Odontalgia as a medical entity.
If you have been tried on such meds and they haven't worked for you, then it would appear from your MRI results that you are indeed a candidate for MVD to decompress the trigeminal nerve near its emergence from the brain stem. It is true that many people who have such compressions are NOT symptomatic. But it is even more true that MVD can reduce or eliminate pain in a high proportion of those who have compressions and who also have pain.
As always, be advised by your doctor in resolving these issues. It would be wise for you to ask your surgeon how he would make a differential diagnosis between Atypical Odontalgia and Atypical Trigeminal Neuralgia, as well as what he believes about the MVD success statistics for someone with your patterns of pain symptoms.
I hope this is helpful to you in sorting all of this out.
Feel free to follow up.
Regards,
Red Lawhern, Ph.D.