Surgical Treatments for TN and related facial pain conditions

Updated on 1-10-06While medications provide effective management for many TN patients, medical therapy is often not a permanent solution for this problem. Fortunately for the TN patient there are several neurosurgical procedures that are available if medication no longer provides the desired results.
 The dilemma for the TN patient considering surgery is how to select a surgical procedure since there are several modes of surgical intervention available. Procedures vary from nerve blocks/injections, percutaneous surgery (through the cheek), to open skull surgery and pinpoint radiation. Each procedure has certain advantages and disadvantages - ease of the procedure, effectiveness, long-term results, recurrences, complications, etc. There is no one medical or surgical treatment that is effective in all patients. The choice between a procedure done as a one-day or outpatient (e.g., radiofrequency coagulation or glycerol injection) or one requiring several days in the hospital (microvascular decompression) depends on the patient's preference, physical well-being, previous surgeries, presence of multiple sclerosis, and area of trigeminal nerve involvement (some procedures are particularly indicated when the upper/ophthalmic branch is involved). Undoubtedly, recommendations by the referring physician and by the neurosurgeon play a strong part in the patient's decision-making process. Many physicians are strong proponents of specific procedures. TNA is not an advocate for any single mode of treatment, but serves to provide information on the many treatments available so that TN patients can explore all their options in an informed partnership with their physician.

• Radiofrequency Rhizotomy (RF) - Percutaneous Stereotactic Radiofrequency Rhizotomy (or Electrocoagulation). This outpatient procedure is done under local anesthesia and sedation. A needle is placed through the cheek through which an electrode is inserted to heat the nerve and destroy the pain fibers. 

• Glycerol Rhizotomy - Glycerol Injection or Installation. Using a surgical technique similar to the RF (above) the surgeon injects glycerol into the cavity where the trigeminal ganglion (the central part of the nerve from which the nerve impulses are transmitted) lies. The nerve is bathed with the glycerol to damage the pain fibers.

• Balloon Compression - Percutaneous Trigeminal Ganglion Compression. Also a "through the cheek" procedure, the surgeon first inserts a catheter up to the trigeminal ganglion and then inflates a tiny balloon to compress the nerve and damage the pain fibers.

Percutaneous Balloon Compression

by TNA MAB member, Jeffrey A. Brown, M.D.

• Microvascular Decompression - (MVD). The operation is performed under general anesthesia where a small opening is made in the back of the skull on the side with the pain. The trigeminal nerve is viewed with a microscope and compressing blood vessels are removed and the nerve is padded with a soft pad (typically shredded Teflon).

Skull Base Institute videos of MVD.

• Stereotactic Radiosurgery - Gamma Knife. - This procedure requires no incision. Using highly focused beams of radiation, a lesion (an area of controlled damage) is created in the root of the trigeminal nerve. The nerve isn't burned as in a laser treatment, but the radiation causes the slow formation of a lesion in the nerve over a period of time to interrupt the pain transmission.  Other information links include:

  Gamma Knife's Relief Painless

  Jacksonville Times-Union, 9-20-04

All these procedures show varying degrees of immediate success and periods of long-term relief from pain. Generally, the average overall rate of success is 85% with about 25% of this group having some level of recurrence in 1-5 years. Many patients respond quite well when additional measures are pursued if the initial procedure is not successful or if the pain returns. There is no one procedure that is 100% effective in all cases. Therefore, it is imperative that the TN patient becomes as informed as possible about the surgical options available and understands fully the potential benefits and outcome possibilities of the procedures being considered.

Complementary and Alternative Treatments for TN and related facial pain conditions  Updated on 1-10-06 

        Over the years, TNA has accumulated anecdotal data concerning non-traditional remedies that patients have found helpful in treating their pain. TNA welcomes these reports and always responds. Some reports come from patients who have failed surgeries in their past, some from those who have found medication to be ineffective or bothersome and some from those with a simple desire to find a non-medical or a non-surgical response to their pain.  The volume of this data has increased since TNA expanded its Mission to include conditions related to TN, such as atypical TN and atypical facial pain, where medical and surgical treatments have seemed to be less effective.  Patients with such conditions, like patients with other forms of chronic pain, typically develop increasing interest in non-traditional remedies as they search for relief.

        TNA has always been open to the use of complementary and alternative medicine (CAM).  Sessions at national conferences have been devoted to the subject with speakers on chiropractic, acupuncture, healing hands, hypnosis and nutrition, to name a few.  Editions of our newsletter, the TNAlert, have also addressed these issues.  Currently, we are assembling a task force to establish both guidelines for patients to follow in their use of such therapies and an informed basis for TNA to share with patients the anecdotal data we are collecting.

        In pursuing this effort, TNA believes that one needs to treat the patient, not just the condition.  So, we need to take care of the mind and body as well as our specific facial pain condition.  CAM therapies are legion; some address the mind and spirit, some address the body.  Whichever therapy you intend to use, TNA advocates that you consider the following:

• Little clinical testing with respect to CAM has been performed according to accepted scientific standards;

• Anecdotal evidence suggests that some CAM works for some people but not for others;

• Failures in the use of CAM tend to go under-reported; 

     Also, before resorting to CAM, patients should perform some due diligence:

• Always research the safety and effectiveness of a product or treatment before use;

• Determine the expertise of the provider;

• Establish the cost and the time-frame in which treatment may be expected to be successful;

• Discuss the proposed treatment with your doctor; and

• Ask your local TNA support group or the TNA national office to put you in touch with patients who may have experience of the product or treatment you have selected.

TNA (The Trigeminal Neuralgia Association) was established in Barnegat Light, NJ in 1990 by founding President Claire Patterson and a board of directors comprised of  TN patients and their families.  Prior to its formation, most TN patients suffered in isolation and knew very little about the disorder and its treatment.  TNA’s founding mission was to improve the quality of life of TN patients through programs that empower patients to become knowledgeable about their condition and treatment options, that aid patients with chronic pain, that educate non-specialists on matters of diagnosis and treatment, and that encourage appropriate medical research.  To achieve those goals, TNA established the following objectives: 

• Provide information, support and encouragement to TN patients and their families and reduce the isolation of those affected by the disorder;

• Act as a liaison between patients and qualified medical and dental practitioners, physicians, and treatment centers that diagnose and treat TN;

• Facilitate a network of support groups in regions throughout the country;

• Promote greater visibility, awareness and understanding of the disorder within the medical profession and broader public arena;

• Coordinate a centralized database of TN patients and other information about medical advancements in the treatment of this disorder; and

• Advocate for medical research needed to determine the cause, treatment options, and cure for TN.

In 2002 TNA expanded its mission because more and more TNA patients had neuropathic facial pain conditions other than TN.  For the most part, these were patients diagnosed with atypical TN or atypical facial pain, a wastebasket definition for those presenting neuropathic facial pain without the symptoms of classic TN and for whom standard medical or surgical treatments are, for the most part, ineffective.  Such patients needed answers to help their condition.  They attended support group meetings and national conferences looking for answers but, for the most part, there was no good news to give them.  Many practitioners, even those well versed in the treatment of TN, believed that the pain of such patients “is in their head”.  TNA believed that a better response should be developed for such patients and that TNA was the most appropriate patient-centered organization to address the issue.  Accordingly, after consultation with the MAB, representatives of NIH, researchers and other practitioners, the Board of Directors of TNA adopted a resolution at its March 2002 Board Meeting to expand its Mission Statement to include patients with TN as well as patients with other related facial pain conditions.  This occurred at a time when the mechanisms of neuropathic pain in general were becoming better understood.  

In recent years a dramatic increase in research on the physiology of neuropathic pain has been undertaken and the advent of functional neuroimaging has demonstrated alterations in brain activity associated with neuropathic pain.  TNA believes that it is time for a patient-centered organization to focus on neuropathic facial pain and the plight of those who suffer from it.  This will yield important dividends for those with classic TN as well as those with other related conditions.

The new mission also changes the way in which TNA looks at pain itself.  For the most part, practitioners regard TN as an acute pain syndrome because they believe that through medication or surgery they can treat the pain.  Whether or not this is the correct view of the nature of TN is debatable but by embracing other forms of neuropathic facial pain, for which no adequate medical or surgical response presently exists, TNA has gone squarely into the chronic pain management business.

Key principles in chronic pain management are that to treat chronic pain, one must understand chronic pain; that pain is a lonely and subjective experience; and that those concerned with the plight of chronic pain sufferers must provide understanding and hope.  TNA believes that these principles are poorly understood by those who treat facial pain and by the patients themselves.  Accordingly, these principles must be woven into TNA’s goals and objectives, if it is to meet the challenge of its expanded mission. 

To address the needs prompted by an expanded mission, TNA determined that it must implement the following measures, focusing on increased research and outreach:

1.   Establish a TN and Related Pain Research Fund.  TNA will appoint a Scientific Advisory Committee, composed of key research investigators, to facilitate research in areas of key importance – epidemiology, heredity, ethnic factors, dental implications and utilization of the TNA Patient Registry information.

2.   Establish appropriate classifications for those neuropathic pain conditions said to affect or arise within the trigeminal system.  Currently, conditions not falling within the definition of classic TN are designated as Atypical TN or Atypical Facial Pain.  These wastebasket definitions give rise to two stereotypical responses:  that no medical or surgical option is available to treat such conditions and that such conditions exist solely in the mind of the patient.

3.    Identify new treatments for neuropathic facial pain conditions, once classified.

4.   Recognize the chronic nature of neuropathic facial pain, including classic TN and how that impacts TNA’s constituencies.  If TN is a progressive disease, for those who decline or are unsuitable for surgery, a lifetime of pain is likely.  The same may be true for those with failed surgeries.  Recognizing the chronic nature of neuropathic facial pain suggests the need for evaluation of lifestyle, behavioral pattersn, and of the role of alternative and complementary therapies.  Those who provide medical and surgical treatment for TN need to be sensitized to its chronic nature.

5.   Encourage pharmaceutical companies to participate in a dialogue with TNA, MAB members, NIH and the Comprehensive Pain Research Department at the University of Florida in order to stimulate expanded research in the use of existing medications for treating neuropathic facial pain.

6.   Using similar techniques, stimulate research in the relationship between neuropathic facial pain and conditions susceptible to treatment by those drugs that impact neuropathic facial pain, e.g., epilepsy.

7.   Encourage pharmaceutical companies with off-label use of their products for treating TN and other neuropathic facial pain conditions to seek FDA approval for these indications.  TNA must redouble its efforts to obtain anecdotal evidence of such use by encouraging patients to complete questionnaires for inclusion in TNA’s Patient Registry.

8.   Expand the Medical Advisory Board to include representatives of other disciplines concerned with the treatment of pain.  For example, the role of the anesthesiologist should be evaluated. 

9.   Explore opportunities for cooperation with other non-profits and institutions concerned with the treatment of pain.  This would include the Chronic Pain Association, the Neuropathy Association, the TMJ Association, the Acoustic Neuroma Association and VZV Foundation.

10. Produce new materials to inform patients of new pain classifications, treatment options, the nature of chronic pain and the skills to live a productive and fulfilled life.In January 2002 TNA moved from Barnegat Light, NJ into new headquarters in Gainesville, Florida.  Gainesville is in a university setting, has access to a young, well-trained workforce and is a low cost environment.  This location also allows TNA easy access to the McKnight Brain Institute, the Parker E. Mahan Facial Pain Center and the Comprehensive Pain Research Department, all located at the University of Florida.  TNA can now play an even more active role in promoting research, and has the opportunity to co-sponsor lectures, forums, and conferences with these institutions to further educate the scientific community.  With a professional staff, TNA is prepared to reach the goals set by the Board.