Third National Trigeminal Neuralgia Association Conference
October 26-30, 2000
Host: Dr. Peter J. Jannetta,
Pittsburgh, PA.
(Note: While I was unable to attend all of the sessions, the following is a summary of the notes I took and information I obtained. Often it was difficult to take accurate notes, as presenters spoke and changed slides quickly. Videos were taken of each session and will be available to support group leaders at a later date.)
More than 300 people attended the 3rd National Trigeminal Neuralgia Association Conference in Pittsburgh. This included health professionals, people currently pain free, those seeking information about medications and procedures, spouses, and those still on medication, having already undergone numerous procedures, and still in pain.
It was interesting, informative and intense. Professional healthcare providers from all over the world attended: neurologists, neurosurgeons, dentists, maxillofacial surgeons, psychiatrists, psychologists, nutritionists, and other caregivers. Each was a specialist in their field.
Sessions covered a wide variety of topics: dental aspects of pain, demonstrations of surgical and dental techniques, results & complications of operations, medications, and the psychiatric & psychological aspects of TN, ATN, and ATFP (Atypical Facial Pain). Demonstrations of surgical procedures available included Radiofrequecy, Glycerol Rhizotomy, Balloon Compression, Gamma Knife (GK), and Microvascular Decompression (MVD).
Items covered:
Prescribing anticonvulsants: At one time TN was thought to be a form of epilepsy and so their use was just sort of stumbled upon trying to correct the epilepsy. It's believed that a person doesn't become immune to the medications. Rather, the pain becomes greater than the current dosage can control.
In 1999, Claire Patterson went to the National Institute of Health (NIH). As a result of her meeting, NIH promised grant money to scientists for doing research in different aspects of TN and facial pain disorders. Cheryl Kitt, PhD from NIH outlined the specific areas in which NIH has requested research.
Doctor's treatment plans and opinions on TN varied. Each doctor who specialized in a particular procedure, believed that procedure was the best, with least side effects, and had their own statistics. (In my humble opinion, most doctors based their opinions on the procedure that they prefer to use almost exclusively).
The doctors seemed to be in agreement that if a patient returns with what they perceive to be a failure, it might in actuality not be a failure at all. They said all characteristics of the original pain must be the same for the procedure to be a failure. If the pain returns and is different in any way, it is something entirely new and not a failure. If the pain returns in a different division or branch, constant rather than episodic, aching or burning rather than like a lightning bolt, to name a few, this is not the same problem that was treated so the original procedure did not fail.
Things to consider before surgery: when quality of life is no longer acceptable, review all surgical options; look for procedure with least likelihood of complications over lifetime of patient. All doctors should inform their patients, there are choices.
Doctor Opinions:
Dr. Peter J. Jannetta, Neurosurgeon. Allegheny General Hospital, Pittsburgh, PA
He believes the only thing that causes TN, is "something",( i.e., vessel, artery) compressing the nerve. And if a surgeon does not find anything compressing the nerve, he's hasn't looked closely enough. (Dr. Jannetta, perfected the MVD, and is considered by many to be best.)
Dr. Kim Burchiel. Neurosurgeon, OHSU Dept. of Neurosurgery, Portland, OR
Stated that TN usually becomes ATN for people who have TN caused by MS. In addition, some people with MS have been successfully treated by MVD. He explained that there are differences between TN, ATN and trigeminal neuropathy. While ATN is more likely to have some sensory loss, classic TN doesn't. Trigeminal neuropathy usually occurs after facial trauma, dental work or sinus surgery. A few of the characteristics of trigeminal neuropathy are pain in a branch of the nerve, possibly episodic and constant and/or can feel aching or burning.
Dr. Joanna Zakrzewska. Neurologist. Royal London Hospitals, London, England
Before starting on a drug therapy it is very important for the doctor to get an accurate diagnosis. In order to make a correct diagnosis, the doctor needs to listen to the patient and ask questions. Take a pain history, which should include, asking questions regarding where the pain is located, the type of pain, how often the pain occurs, and its duration. She is currently doing research in the UK. She hopes eventually to do research in the US on what the patients' Quality of Life expectations are when using drug therapy or with outcomes from a surgical procedure.
Dr. Steven Graff-Radford. DDS. Cedars Sinai Medical Center, Pain Center, Los Angeles, CA Stated that he doesn't believe dental work causes TN. Rather, he believes the problem is already there but the dental work is the proverbial straw that breaks the camel's back. Therefore, the dental work causes the pain to occur but doesn't create the problem. On the other hand, dental work can cause some unfavorable results that result in Neuropathic pain (pain following trauma to the nerve), which is not the same as Trigeminal Neuralgia. Dr. Graff-Radford also stated that there is no documentation that an amalgam filling either causes TN or makes it worse. He also stated that TN does not cause dental problems.
Since going to the dentist often results in increased pain, he suggested that we try some of the following possible solutions: take an increased dosage of medication the day before
and the day after the dental work (please do this only by notifying your prescribing physician that you are doing so); take a drug such as Valium before the appointment; and/or use an anesthetic or nitrous oxide during the visit. Before seeing a dentist, he suggested that a patient ask the dentist if he/she knows anything about Trigeminal Neuralgia and if he has/had any patients with TN. If the answer is no, find another dentist.
Dr. Kenneth Casey. Neurosurgeon. Minnesota Neurological Surgeons, Plymouth, MN.
"The data on what to do if the pain returns is sparse at best. Regarding any surgery, whether it is for the first time or for a repeat, the patient must weigh the degree of invasiveness vs. the degree of destruction. It's not only important to have an accurate diagnosis the first time but the second also. It's important to determine whether the procedure failed or the pain is something entirely new". He said that for people that have constant pain, a pilot study using IV drip lidocaine has been done. Dr. Casey also stated that using compounded medications are showing good results.*
Dr. Albert Rhoton. Neurosurgeon. Univ. of Florida, Gainsville, FL.
Showed a fascinating 3D video of an excursion through the brain. Before he started the video he said that a physician's best ally in the treatment of pain is a well-informed patient. This statement was repeated by many of the doctors there. The video highlighted the various areas of the brain in relation to Trigeminal Neuralgia, showing where the nerve exits the brainstem, what a compressed nerve looks like and the area where MVD's are performed. Dr. Rhoton explained that MVD's are performed over the 8th cranial nerve, responsible for hearing and balance. Which explains there is a higher risk of side effects when one has an MVD.
Dr. Ronald Young. Neurosurgeon. California.
He stated that it is ok to repeat a GK twice, and possibly three times, but only if a few years have gone by. While Dr. Young has performed all of the previously mentioned surgical options, he now pretty much does GK exclusively (as do Dr. Ronald Brisman, The Neurological Instate, NY and Dr. John Alksne, Univ. of CA, San Diego, CA).
Dr. John Tew. Neurosurgeon, Univ. of Cincinnati, Cincinnati, OH
He feels a repeat MVD is frequently unsuccessful. His preference for a second procedure if it was an MVD or Glycerol that failed is to do a Percutaneous Radiofrequency Rhizotomy. (It should be noted, that the Radiofrequency and Glycerol Injections, have the highest rate of causing AD).
Dr. Ronald Apfelbaum. Neurosurgeon. Univ. of Utah Health Sciences Center, Salt Lake City, UT
The first step is to go back on the medications if the pain returns. He feels they might work better after a procedure, because the nerve has been treated. He stated that if it was an MVD that failed, his preference is to do a repeat with one of the percutaneous procedures, preferably glycerol.. While this has a high recurrence rate, it can be repeated.
Glycerol is injected with the purpose of damaging the nerve to stop the pain. The cistern is the area that is targeted to inject the glycerol. The cistern is the area just before the trigeminal nerve splits into the 3 divisions when it exits from the ganglion. The possible risks of this procedure include infection, sensory loss around the lips, AD, and meningitis which doesn't occur often. While TN can recur, the procedure can be repeated. This procedure does not treat the cause of TN. It only blocks the pain
Delayed and inaccurate diagnoses remain a common problem facing individuals suffering from TN. Increased efforts to inform medical and especially dental professionals may reduce diagnostic delays and treatment errors for patients with TN.
The Fourth National Trigeminal Neuralgia Association Conference will be held in San Diego, in the fall of 2002.
Sher A. Cuzzivoglio
Northern Virginia Support Group Leader
Novatnsupport@aol.com703/379-1395
** Topical creams: I have personally found these to be helpful. I have two other compounds, all require prescriptions. One has: Tetracaine, Doxepin, Ketamine and Neurontin. The other: Lidocain and Tetracaine.