Posted on this page is information contained in an HFSA Informational Pamphlet that is distributed to physicians and medical facilities, upon request by a member, to introduce them to the HFSA.
To request a copy for yourself or to have a doctor or medical facility added to our mailing list, please click on
the appropriate link below.
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FINDING THE RIGHT DOCTOR
In fact, there are a number of ailments that go well beyond the knowledge and skill of
one’s family doctor or even a local medical specialist that your family doctor might recommend.
For example, the diagnosis and treatment of certain types of relatively rare cancers or of a
compressed cranial nerve, which may result in Hemifacial Spasm (HFS) or Trigeminal Neuralgia
(TN).
When afflicted with a rare or unusual medical ailment, it is crucial that the patient go beyond their traditional thinking to search out the doctors who have specialized in treatment of the ailment at hand. In today’s technological society, the Internet is an excellent starting point in this search for the “right” doctor.
The onset of HFS is one of those medical ailments that require at least a neurologist
or similarly skilled doctor to diagnose and a very highly skilled neurosurgeon to treat, if
surgery is ultimately elected.
However, finding such a neurosurgeon can be an overwhelming task. A family doctor or
dentist will likely be familiar with the symptoms of TN, but typically not the symptoms of HFS, which is less common. For its proper diagnosis, a neurologist, neurosurgeon or ophthalmologist may be necessary.
Regarding the treatment of HFS, three approaches are available:
While all three approaches are available to the neurological community, one or more may
not be recommended by a neurologist due to a lack of accurate and complete knowledge or
erroneous information about a particular approach.
For example, a surgical approach may not be recommended by a neurologist due to a limited understanding of the risks involved and/or due to the lack of knowledge as to the existence of a skilled neurosurgeon who has specialized in its treatment. A growing number of neurosurgeons in the U.S. have developed expertise in the surgical treatment of HFS and other cranial nerve problems through the performance of Microvascular Decompression (MVD).
NEUROLOGICAL APPROACH
BOTULINUM TOXIN INJECTION
Botulinum toxin is produced from the same bacteria responsible for a type of food
poisoning called Botulism. However, very small amounts are injected.
Unfortunately, the effectiveness of this treatment is temporary; therefore, periodic
injections are required approximately every three to six months. The effectiveness also
diminishes over the course of several years of use due to the buildup of antibodies. Botulinum
toxin destroys the motor-end plates with much regrowth after each use. The capacity for
regrowth is not unlimited, leading to persistent facial weakness.
There are several possible immediate side effects such as a drooping eyelid, dryness of
the eye and the loss of muscle function at the corner of the mouth causing a lopsided smile.
Many therapists will not use Botulinum toxin except in the eye muscles.
SURGICAL APPROACH
A small incision is made behind the ear on the affected side, and a small opening is made in the bone about the size of a quarter. Small implants made of shredded Teflon felt (which looks like wisps of absorbent cotton) are used to maintain the separation of the offending blood vessel/artery on the nerve. The offending blood vessel/artery rests on the felt instead of the nerve.
Intra-operative monitoring of the patient’s continued hearing ability is highly
recommended. The operation takes approximately two to three hours. The average length of
stay in the hospital is 72 hours. Over 90% of patients are back to work enjoying their former
level of physical activity within three months.
Unfortunately, like all operations, this approach involves some risk that should be discussed
with your neurosurgeon.
(Note: These are “personal” experiences, and should not be used to replace the services of
licensed medical doctors.)
DISCLAIMER:
Our website will provide you with a myriad of information obtained from HFSA members and others.
The information contained within this site is believed accurate and written with honest
intentions. It is subjective, based upon the personal experiences and observations
of people without medical training. However, the Medical Terminology section of our website has
been extracted from published medical journals, edited by our Medical Advisory Board (MAB) and
is believed to be factual. Information derived from this site should NOT be used to replace
the services of your licensed medical practitioner. On your first visit to our site, please
read our full Disclaimer at www.hfs-assn.org .
“Let the Journey Begin!”
The Hemifacial Spasm Association (HFSA) is comprised of people from all walks of life who have
had or are suffering from HFS. We offer an ear to listen, a shoulder to lean on and someone who truly understands how you feel emotionally while in the grip of facial contortions, a winking eye and a mouth being uncontrollably twisted.
We are a group of caring, understanding people just like you — people who are (or were) where
you are now. Should you ask, we will be eager to share personal experiences with you, expecting nothing in return but the opportunity to help as others have helped us. We are nonjudgmental.
We will never attempt to persuade you to pursue a particular method of treatment or surgery,
attempt to convince you that one doctor is better than another, that one medical facility far
surpasses another or that one alternative treatment works and another doesn’t.
We will never offer medical advice.
We know how it feels to be alone suffering with HFS. We understand all of your emotions. We
have been there. And .......... you will make friends that will last a lifetime for, “friends
are the quiet angels who lift us to our feet whenever our wings have trouble remembering how to
fly.” (Anon.)
So, take a deep sigh of relief, and begin your journey with us. Welcome to our group!
Join Us On the Web!
Please visit us at www.hfs-assn.org . There is no obligation. You will gain valuable information pertaining to professional research, treatment options, Botox® injections, insurance coverage, MVD, medications and alternative treatments, etc.
HFSA Meetings
Meetings are occasionally held to learn more about HFS from noted medical practitioners who
share the latest research and technology with us. Meetings are announced on our website, and
attendance is strictly voluntary.
MEDICAL ADVISORY BOARD
Peter J. Jannetta, M.D., Chairman
John F. Alksne, M.D.
Jeffrey A. Brown, M.D.
Kim J. Burchiel, M.D.
Kenneth F. Casey, M.D.
Jeffrey Cohen, M.D., Ph.D.
Stephen J. Haines, M.D.
Anthony M. Kaufmann, M.D.
Neil R Miller, M.D.
Albert L. Rhoton, Jr., M.D.
Peter J. Savino, M.D.
David Sirois, D.M.D., Ph.D.
John M. Tew, Jr., M.D.
Ronald F. Young, M.D.
The issue of a doctor, family or specialist, not being able to recommend another doctor with more specialized medical knowledge and skill is a possibility we never consider. As a patient, we have a concept or mental mind set that there is no need to search for a medical specialist on our own.
Involves prescribing one or more medications or the use of biofeedback training. Success in
this approach has been limited to drug therapy through the use of clonopine, diazepam, levodopa, lioresal lithium, methyldopa, neurontin, tetrabenzaine, and others. Unfortunately, these treatments are not usually successful and have side effects.
The injection of Botulinum toxin (Botox®) into one or more areas of the affected side of the
face may be indicated in the muscles of the eyelid, the muscles in the cheekbone area and the
muscles just below the cheekbone. In extreme cases, the forehead and neck may also be injected.
Microvascular Decompression (MVD) surgery requires a general anesthetic. It involves a
neurosurgeon surgically separating one or more blood vessels/arteries that are impinging upon
the seventh (facial) cranial nerve.
Several Hemifacial Spasm Association (HFSA) members have submitted profiles and summaries on our website that you may find very informative. Please take time to peruse the site to gain
valuable insight into MVD.
Allegheny General Hospital
Department of Neurosurgery
Pittsburgh, PA (USA)
University of California, San Diego
Department of Neurosurgery
San Diego, CA (USA)
Neurological Surgery, P.C.
Great Neck, NY (USA)
Oregon Health Sciences University
Department of Neurological Surgery
Portland, OR (USA)
Detroit Receiving Hospital, Wayne State University
Department of Neurosurgery
Detroit, MI (USA)
Beth Israel Medical Center/ Phillips Ambulatory Care Center
New York, NY (USA)
University of Minnesota
Department of Neurosurgery
Minneapolis, MN (USA)
University of Pittsburgh Medical Center
Presbyterian Hospital
Center for Cranial Nerve Disorders and Microvascular Surgery
Pittsburgh, PA (USA)
Health Sciences Centre Hospital
Winnipeg, Manitoba (Canada)
Johns Hopkins University
Department of Ophthalmology & Neurology
Baltimore, MD (USA)
University of Florida
Department of Neurosurgery
Gainesville, FL (USA)
Wills Eye Hospital
Department of Neuro-Ophthalmology
Thomas Jefferson University
Philadelphia, PA (USA)
Chairman, Department of Oral Medicine
New York University College of Dentistry
Department of Neurology
New York, NY (USA)
Frank H. Mayfield Professor and Chairman
The Neuroscience Institute
Medical Director
Cincinnati, OH (USA)
Northwest Hospital
Department of Neurological Surgery
Seattle, WA (USA)