Red posted earlier that many times and MRI may not reveal a compression that is actually there.
I am not getting the MVD until fall so I have time to do some research on which doctor to choose. Has anyone had the MVD done yet?
Wow. I do not have electric shocks but the atypical symptoms in a table which i l post below comes from someone who has been most widely published. (I defer to Red, nonetheless)
I have been told that no, i do not have a compression, that exploratory surgery has low odds, that mvd surgery with atypical presentation has low odds and that pain management is my only rational choice.
YET, after almost four years of constant pain, I keep wondering that something is compressing a nerve.
I called the Virginia TN Center...they were sponsoring a local conference...and their head n.surgeon said that I needed a new MRI with a different protocol and that his office would send a description of this protocol to me. I called his office many times; he never followed up. Later, I was in contact with another n.surgeon at the Vanderbilt orafacial pain clinic. The head surgical nurse said that she was aware of this other doctor's protocol and that it was not reliable...too many false positives or false negatives. I contacted the top n.surgeon here in Louisville, he was glib..."can't help you..you do not have symptoms of TN...best i can do is refer you to Vanderbilt where Dr. Conrad works with atypical symptoms. " Turns out that the only treatment that Conrad does is implant a tens unit in the brain and that efficacy is not very impressive per his head nurse.
Bottom line for me...I sure would like to have another imaging study done. BUT WHAT would work for me?
No one seems to knw. And, I , too would be scared of entering brain surgery.
DOES ANYONE KNOW OF SPECIFIC IMAGING STUDIES DIFFERENT FROM WHAT MAY BE THE USUAL MRI OR CT SCAN?
(Maybe this kind of information would help Kristen, too. Can't help but think that it's best to know where the compression is before going in.)
Table 4. Table 4. Atypical Odontalgia/Phantom Tooth Pain (PTP): Revised Criteria of Marbach*
- Pain is located in the face or described as a toothache.
- The pain is described as a constant dull, deep ache. (Less than 10% of sufferers report occasional spontaneous sharp pains that overlay the ache. Sharp pain is not essential to meet criteria.)
- A brief (seconds to minutes) pain-free period is reported upon awakening from sleep. There are no other refractory periods.
- Pain develops (or continues) within one month following endodontic treatment or tooth extraction, or other trauma or medical procedure related to the face.
- Overlying the area of dental (or other) treatment (usually on the surface of the face but occasionally intraorally) is a location with a much lowered pain threshold (hyperalgesia), often surrounded by a larger area with less severe hyperalgesia.
- Sleep is undisturbed by pain or other phantom sensations.
- No radiographic or laboratory tests suggest other sources of pain.
For Kristin: there are at least two neurosurgeons on the Medical Advisory Board of the TN Association, who practice in the New York City area. Suggest you log onto http://www.fpa-support.org and look up the MAB members page, as a start.
For Wm Phillips: there is a special set of MRI weightings that is sometimes called a Trigeminal Protocol. The baseline procedure to which these weightings are applied is a sub-millimeter full brain scan performed both with and without a contrast agent (sometimes Gadolinium). The most information is generated by a post-procedure 3-D reconstruction of the planes of the image. Not all MRI centers do this high resolution procedure, and not all insurance companies are willing to pay for it.
Likewise, FYI all, hearing loss is presently very rare as a side effect of MVD. Anesthesia Dolorousa or long-lasting facial numbness are more common. For anyone with a mixture of Type I (typical) and Type II (atypical) symptoms, a reasonable expectation is that the typical symptoms may be helped by MVD, but the atypical might not. If an exploratory procedure is performed and no compressions are found, then there is an option for partial nerve section rather than padding out the blood vessels that cause compression. There are risks of pain recurrence in worse forms, after partial nerve section. Such risks should be discussed in detail with the neurosurgeon who proposes to do one.
The table provided by Wm Phillips is an almost classic profile for ATN. With these symptoms, I believe most neurosurgeons will tell you that the chances of significant improvement in your pain after surgery are less than 50/50. Increasingly in recent years, a lot of neurosurgeons won't attempt a procedure (MVD or rhizotomy) when these are the only symptoms the patient has and there are no electric shock components.
I wish the news could be better. But the above is what I see from years of probing medical literature. Any and all of these factors should be discussed with a Board Certified neurosurgeon who does frequent procedures with face pain patients, before a decision is made to have or not have surgery.
Go in Peace and Power,
Red
Red,
As always I appreciate the detail that you provide and reliable sense that you speak from a well read background.
My symptoms, indeed, are "classical" AO.
The endodontist that I just spoke to said that I have a "convoluted diagnostic picture". Of course I think that most of these providers are poorly informed and not that motivated to be better informed. My response was that I fit to the "t" what most, if not all, academic papers report on symptom presentation of AO. So I then asked why he used the word, "convoluted." He explained that most patients with AO resolve or have significantly diminished pain after a few years. Duration and course of pain does strike me as having diagnostic significance. Does it? Is there an average duration..or some kind of statistical description that speaks to this variable?
Along these lines, I wonder if there is compression of a nerve more in the proximity of the focused pain at the tooth. The ENT docs only do CT scans and I have not been able to locate a specialist that resonates with the question..."do you have experience with diagnosing and treating AO/neuropathic pain that feels dental in nature."
Are there MRI protocols specific to the sinus area appropriate for finding the underlying cause of AO?
Wm, your questions present me with a challenge. I'm probably going to contradict properly licensed doctors in the observations that follow. I don't make a habit of doing that, as I'm not strictly qualified to have that kind of cat fight in public. But here goes...
I am one of those who does not accept "Atypical Odontalgia" as a valid diagnosis for a medical entity that is discrete from any other form of facial pain of neuropathic origin. The term actually means only "unusual toothache". Among the patients I've talked with during the past 17 years, another feature which is sometimes associated with this diagnostic label is also a tendency of the pain to shift from tooth to tooth -- particularly when an extraction is made of a tooth believed to be diseased even though there is no radiographic evidence of abscess. You do not list that feature.
Saying that you have a "convoluted diagnostic picture" is roughly equivalent to "I've never seen these features in this combination before, and I know of no clear association with a named dental or neuropathic disorder". I just wish dental professionals had a little more humility about admitting they don't understand what they're seeing. If they did, then fewer patients might be subjected to a sequence of multiple dental extractions that don't help with the pain in their jaw and gum areas.We tend to forget that the sum total of dental school study on facial neuralgia and neuropathy is about 12 hours in a curriculum of three years. So do the dental docs.
As far as I know, duration (years) and course (physical development or spread in intensity) of facial pain disorders has NOTHING to do with assigning a cause or category of causes to these disorders. Just about all of the disorders get worse (more intense) over time, and tend to spread in physical distribution from one of the branches of the trigeminal nerve to others. Frequency of pain attacks and their association with light touch stimulus may help to distinguish between pain that is likely neuropathic in origin versus mechanical (i.e. TMJ disorder). And the type of pain (electric shock vs dull aching burning, searing, boring pain) can help to distinguish Typical TN from everything else. But that's pretty much it. I have never read documented studies that establish a link between the length of time that pain persists, versus the TYPE of pain diagnosis. If your doctor has any such study references, I'd like to see them (and have you read them!) I think the guy is blowing smoke, not to put too fine an edge on the observation.
I've never seen a reliable cause-and-effect association between sinus area imagery features and the diagnostic label of Atypical Odontalgia. That's one of the maddening things about the use of this term. When it's assigned, there is almost never any specific evidence of what might have caused the "disorder". And the treatments that seem to work best for it are the SAME as used in non-specific facial pain of neuropathic origin: tricyclic antidepressant meds, sometimes in combination with an anti-seizure med or Lyrica; alternately, opioid drugs to manage the pain symptoms.
The type of specialist who may be able to do you the most good would be someone with credentials as a cranio-facial pain specialist. There aren't many around. I suggest that you talk with the patient relations and referrals office at one or two large local hospitals, and ask them to locate someone for you who has this specialized training, even if they have to go out of State to do so.
Just my two Red cents, for whatever they're worth,
Go in Peace and Power
Red
Red,
Yes, AO is a non-diagnosis but I think it does serve to say "not TN" and that the focus of perceived pain
is dental. And, Marbach's symptom list, along with other symptoms included by other researchers...such as chewing and talking...can increase pain. There's a cluster that shows up and seemingly it fits a significant clinical group of patients. So, for me, there is descriptive validity. What is obviously missing is an underlying cause that can direct treatment. Re: imaging....I've had an mri,ct scan, digital ct scan, and radiograph. No pathology evident. Dentist involved made the situation worse. Within a few weeks of onset, I had a minor cavity filled in the same quadrant, a root canal (pulp was vital), a huge splint told to wear 24 hours a day, and three teeth bonded with the theory that the tooth with pain needed to be stabilized. This does not include three different evaluations from different specialist who liked to poke around alot. And, there was insistence to NOT use any medication since this would confound treatment. After three months pain worsened and I subjected myself to a training institute ("fellows" where you begin and work yourself up the food chain to see the specialist is something I try to avoid) at UK Dental College. As it turns out they treated me very well. Jeff Okeson directly evaluated me. He is considered a "guru" in the field. His advice: take meds, wait for a medical through which may be a decade off, nothing intrusive, and use distraction. In the past year we communicated and he did report that "some" patients were finding that their pain was diminishing overtime.
For non intrusive tx, I have tried a lot. This includes three different "cranial sacral massage therapist". I assume that this is not the same as a cranial facial pain specialist. It really might not be much different from the orofacial pain clinic run by Okeson. Another orofacial pain specialist I consulted with is Henry Gremillion. He agreed with Okeson's findings.
But, I find it impossible to just give up. Submission, to a point, but not abandon the idea of resolution.
More recently I came across the writings of Russel Vickers. He captured a lot of my experience. Unfortunately, he lives in Australia. (Interestingly, considerable research comes in other places than the states. I see interesting titles/abstracts from Italy and Asia.) I have had email correspondence with Vickers. He is very compassionate. While he does not believe that emotional disorders cause neuropathic pain he does seem to believe in the importance in considering one's temperament and lifestyle (biosocial factors). In my case, lowering stress and relaxing helps; the opposite is just as true. Although, I have already been to an herablist Vickers is partial to different herbs that I am just beginning to use this week---passionflower and jujube. His dosage is quite high. If I was to go to the local health store, the cost per month could be over 500.00. Vickers arranged for a purchase from a distributor in Sydney. Good quality at a much much lower price point. The bugga boo has been that in the past number of months they have not had stock of the two herbs at the same time and only made sense to ship together...shipping is not cheap. So, after much searching in the states I have found a good quality of Passionflower. For Jujube I had to make arrangements with a licensed health care specialist to make the order. Total cost will probably be around 80.00 per month.
Sleep is more therapeutic than anything . If only I could buy that. Severe reflux has led me to a dramatic change in diet. No grain, no dairy, no sugar. That's a big change. Back to sleep...I finally had a sleep study. I had thought that one had to be obese. When I found out otherwise, I had the study. I was diagnosed with severe rem sleep apnea. The machine cost a lot; I hate it but will work with it.
I take lorazepam every other night; 2mg. Everynight would lead to an increased dose and addicition.
Everyday I take 250mg of Lyrica. Okeson considers a positive response to this class of drugs as almost proof positive for neuropathic pain. Dentist should be required to know the symptoms of AO and to prescribe or refer to a neurologist when there is not the usual evidence to warrant a root canal..can't reverse that one.
As with many others in this clinical population, I have been to a "functional" medical doctor. Their approach..."can't cure you but we will make you healthier." He decided that I was thyroid deficient. To me and my internist a lot of mumbo jumbo. After over a year, I quit. By then, I indeed was deficient. Dramatically tired. It is likely that my thyroid gland stopped producing. So, I am back to taking thyroid meds.
Well, I have an early bedtime these days...9pm is bedtime routine.
Feel free to make more comments. I like hearing what you have to say.
Thanks,Bill....p.s.:
Vickers:
This is one of a number of .pdf articles by Vickers. http://sydney.edu.au/medicine/pmri/pdf/Phantom-tooth-pain.pdf
Others, though, require access to Australian Endodontic Journal:
Dissertation on prevalence:
i have nerve damage from lower wisdom tooth extraction and my nerve compression is at the site of damage extending up to the first molar. an oral jaw surgeon helped me…
wm phillips said:
Red,
As always I appreciate the detail that you provide and reliable sense that you speak from a well read background.
My symptoms, indeed, are "classical" AO.
The endodontist that I just spoke to said that I have a "convoluted diagnostic picture". Of course I think that most of these providers are poorly informed and not that motivated to be better informed. My response was that I fit to the "t" what most, if not all, academic papers report on symptom presentation of AO. So I then asked why he used the word, "convoluted." He explained that most patients with AO resolve or have significantly diminished pain after a few years. Duration and course of pain does strike me as having diagnostic significance. Does it? Is there an average duration..or some kind of statistical description that speaks to this variable?
Along these lines, I wonder if there is compression of a nerve more in the proximity of the focused pain at the tooth. The ENT docs only do CT scans and I have not been able to locate a specialist that resonates with the question..."do you have experience with diagnosing and treating AO/neuropathic pain that feels dental in nature."
Are there MRI protocols specific to the sinus area appropriate for finding the underlying cause of AO?
Thanks so much. So much to think about!
Richard A. "Red" Lawhern said:
For Kristin: there are at least two neurosurgeons on the Medical Advisory Board of the TN Association, who practice in the New York City area. Suggest you log onto http://www.fpa-support.org and look up the MAB members page, as a start.
For Wm Phillips: there is a special set of MRI weightings that is sometimes called a Trigeminal Protocol. The baseline procedure to which these weightings are applied is a sub-millimeter full brain scan performed both with and without a contrast agent (sometimes Gadolinium). The most information is generated by a post-procedure 3-D reconstruction of the planes of the image. Not all MRI centers do this high resolution procedure, and not all insurance companies are willing to pay for it.
Likewise, FYI all, hearing loss is presently very rare as a side effect of MVD. Anesthesia Dolorousa or long-lasting facial numbness are more common. For anyone with a mixture of Type I (typical) and Type II (atypical) symptoms, a reasonable expectation is that the typical symptoms may be helped by MVD, but the atypical might not. If an exploratory procedure is performed and no compressions are found, then there is an option for partial nerve section rather than padding out the blood vessels that cause compression. There are risks of pain recurrence in worse forms, after partial nerve section. Such risks should be discussed in detail with the neurosurgeon who proposes to do one.
The table provided by Wm Phillips is an almost classic profile for ATN. With these symptoms, I believe most neurosurgeons will tell you that the chances of significant improvement in your pain after surgery are less than 50/50. Increasingly in recent years, a lot of neurosurgeons won't attempt a procedure (MVD or rhizotomy) when these are the only symptoms the patient has and there are no electric shock components.
I wish the news could be better. But the above is what I see from years of probing medical literature. Any and all of these factors should be discussed with a Board Certified neurosurgeon who does frequent procedures with face pain patients, before a decision is made to have or not have surgery.
Go in Peace and Power,
Red
Wm,
Your very long posting is going to take some digesting. I may have to answer it in "bites". One initial thought, though: I've read some of Henry Gremillion's work and watched him in interactive seminars with patients in a TNA National Conference. He seems very well grounded and very compassionate.
I will have to read up on Vickers, however. I am personally very unimpressed by the herbalists who claim to be able to manage chronic pain conditions. I have yet to see a single scrap of medical evidence in double-blind trials of most of the herbs they recommend. And for the few that have undergone trials, results have tended toward inconclusive or negative.
FYI, a massage therapist is generally a paraprofessional not an MD. A cranio-sacral massage therapist may have training derived from various schools of chiropractic or osteopathic medicine. I think it will depend on where they trained.
I'll try to get back to this long posting early next week. Right now I'm on the road with my family for some long delayed vacation.
Regards and best,
Red
wm phillips said:
Red,
Yes, AO is a non-diagnosis but I think it does serve to say "not TN" and that the focus of perceived pain
is dental. And, Marbach's symptom list, along with other symptoms included by other researchers...such as chewing and talking...can increase pain. There's a cluster that shows up and seemingly it fits a significant clinical group of patients. So, for me, there is descriptive validity. What is obviously missing is an underlying cause that can direct treatment. Re: imaging....I've had an mri,ct scan, digital ct scan, and radiograph. No pathology evident. Dentist involved made the situation worse. Within a few weeks of onset, I had a minor cavity filled in the same quadrant, a root canal (pulp was vital), a huge splint told to wear 24 hours a day, and three teeth bonded with the theory that the tooth with pain needed to be stabilized. This does not include three different evaluations from different specialist who liked to poke around alot. And, there was insistence to NOT use any medication since this would confound treatment. After three months pain worsened and I subjected myself to a training institute ("fellows" where you begin and work yourself up the food chain to see the specialist is something I try to avoid) at UK Dental College. As it turns out they treated me very well. Jeff Okeson directly evaluated me. He is considered a "guru" in the field. His advice: take meds, wait for a medical through which may be a decade off, nothing intrusive, and use distraction. In the past year we communicated and he did report that "some" patients were finding that their pain was diminishing overtime.
For non intrusive tx, I have tried a lot. This includes three different "cranial sacral massage therapist". I assume that this is not the same as a cranial facial pain specialist. It really might not be much different from the orofacial pain clinic run by Okeson. Another orofacial pain specialist I consulted with is Henry Gremillion. He agreed with Okeson's findings.
But, I find it impossible to just give up. Submission, to a point, but not abandon the idea of resolution.
More recently I came across the writings of Russel Vickers. He captured a lot of my experience. Unfortunately, he lives in Australia. (Interestingly, considerable research comes in other places than the states. I see interesting titles/abstracts from Italy and Asia.) I have had email correspondence with Vickers. He is very compassionate. While he does not believe that emotional disorders cause neuropathic pain he does seem to believe in the importance in considering one's temperament and lifestyle (biosocial factors). In my case, lowering stress and relaxing helps; the opposite is just as true. Although, I have already been to an herablist Vickers is partial to different herbs that I am just beginning to use this week---passionflower and jujube. His dosage is quite high. If I was to go to the local health store, the cost per month could be over 500.00. Vickers arranged for a purchase from a distributor in Sydney. Good quality at a much much lower price point. The bugga boo has been that in the past number of months they have not had stock of the two herbs at the same time and only made sense to ship together...shipping is not cheap. So, after much searching in the states I have found a good quality of Passionflower. For Jujube I had to make arrangements with a licensed health care specialist to make the order. Total cost will probably be around 80.00 per month.
Sleep is more therapeutic than anything . If only I could buy that. Severe reflux has led me to a dramatic change in diet. No grain, no dairy, no sugar. That's a big change. Back to sleep...I finally had a sleep study. I had thought that one had to be obese. When I found out otherwise, I had the study. I was diagnosed with severe rem sleep apnea. The machine cost a lot; I hate it but will work with it.
I take lorazepam every other night; 2mg. Everynight would lead to an increased dose and addicition.
Everyday I take 250mg of Lyrica. Okeson considers a positive response to this class of drugs as almost proof positive for neuropathic pain. Dentist should be required to know the symptoms of AO and to prescribe or refer to a neurologist when there is not the usual evidence to warrant a root canal..can't reverse that one.
As with many others in this clinical population, I have been to a "functional" medical doctor. Their approach..."can't cure you but we will make you healthier." He decided that I was thyroid deficient. To me and my internist a lot of mumbo jumbo. After over a year, I quit. By then, I indeed was deficient. Dramatically tired. It is likely that my thyroid gland stopped producing. So, I am back to taking thyroid meds.
Well, I have an early bedtime these days...9pm is bedtime routine.
Feel free to make more comments. I like hearing what you have to say.
Thanks,Bill....p.s.:
Vickers:
This is one of a number of .pdf articles by Vickers. http://sydney.edu.au/medicine/pmri/pdf/Phantom-tooth-pain.pdfOthers, though, require access to Australian Endodontic Journal:Dissertation on prevalence: