Hi I have just read this from the Face Pain Association, thought i would post it on here, if thats ok? To reach a wider audiance.
Seeking volunteers to pilot a scientific study of trigeminal neuralgia using EEG and MRI
Trigeminal Neuralgia Pilot Project
We are seeking volunteers to pilot a scientific study of trigeminal neuralgia using EEG and MRI. This preliminary study is needed to provide early clues that will guide the overall objectives and procedures of a future formally designed study. This pilot will focus on two groups of subjects from among the broad spectrum of people with trigeminal neuralgia. Based upon these pilot studies, and depending on availability of research funding, a future study could include other groups.
Subjects for this pilot
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Classic TN. One group is those with so-called “classic” trigeminal neuralgia, a syndrome of intermittent lancinating facial pain, a condition that is largely defined by the substantial relief from the medication carbamazepine (Tegretol) or oxcarbazepine (Carbatrol).
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Anesthesia Dolorosa. The other group is those with so-called anesthesia dolorosa. Typically, those with AD may have had a prior history of classic TN, having failed medication, and have undergone a procedure on the trigeminal ganglion resulting in the loss of sensation to the face. Among those who undergo this kind of procedure some people develop a persistent facial pain in the territory of the loss of facial sensation.
General Description of Procedure
Subjects contacting the laboratory should be prepared to provide details of current medications and a brief clinical discussion to verify their suitability for the present pilot. Subjects should have the ability to travel to the Academic Health Center of the University of Florida / Shands and safely walk across the center to an academic, non-clinical area of the center. Qualified subjects will be invited to participate in either one or both of these safe, non-painful, non-invasive neurophysiological procedures. Being able to remain still and not move facial muscles during the study is highly desirable.
The EEG procedure involves putting on a cloth cap over the usual hair-covered areas of the head, and placing electrode gel through holes in the cap and attaching sensor wires to the cap. There are no sensors in contact with the face, where those with TN or AD are usually sensitive. Subjects will then look at a visual cue and press a button or slide device to report the timing and intensity of their TN pain. The preparation time can be up to 30 minutes and the procedure will take approximately 20 minutes. Subjects will then be given the opportunity to wash the electrode gel from their hair at the conclusion of the study.
The MRI is a scanning procedure that uses a commercial diagnostic MRI machine, but is specially programmed for research studies. This procedure involves lying still on a scanner bed that slides in and out of a tunnel-like device that is the scanner. There will also be a frame placed around your head but it will not touch your face. During the scan you will use a button or slide device to indicate the pain experiences that you would normally have associated with TN or AD. The entire procedure should take an hour, but the scanning time in the MRI should be approximately 30 minutes.
General Considerations
There are no inherent risks associated with either procedure. Your participation is voluntary and you may withdraw your participation at any time during the procedure. Your participation or decision not to participate will not affect your ongoing or future care at UF/Shands Medical Center. There are EEG and MRI technologies that are used clinically, but these research procedures are not clinical tests and are not intended to provide any clinically relevant diagnostic or prognostic information, nor are they a substitute for the clinical form of these tests. There is no compensation for this study, aside from the knowledge of having contributed to a better understanding and future treatment of trigeminal neuralgia. We will provide a parking voucher that will cover the cost of using a Shands parking lot.
Hi I have just read this from an email from the Face Pain Association.
Those interested in participating should contact the research team at the Ahn lab directly, either by telephone or email.
Contact Information
Please contact one of the Ahn Lab Research Coordinators to participate in this study:
Meggan Jordan
Jenny Holt
1275 Center Drive
Biomedical Sciences Building J480
Gainesville, FL 32610
Telephone: 352-■■■■■■■■
Email: ■■■■■■■■■■■■■■■
For more details and to sign up to volunteer, visit the main study page here: http://andyahnlab.neurology.ufl.edu/projects/trigeminal-neuralgia-pilot-project/