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Support for Skull Base Surgery Patients in the Information Era
By M. Fe Mangila, R.N., N.P. Nurse Practitioner

One of the things that makes my role as Nurse Practitioner at the Skull Base Institute so valuable to me is the opportunity to act as a patient advocate at all of the various levels of care we deliver to our patients. I experience a distinct satisfaction in educating our patients regarding the aspects of their illness during preoperative screening and assessment, surgery, the critical postoperative phase, and in following up with them at home after surgery. I find this interaction with my patients rewarding because I see how through education they are empowered, and how through self-empowerment they are able to rehabilitate themselves so well.

Until recently, the patient education that I have been involved with began almost exclusively during the first office visit. Because the field of skull base surgery is so specialized, and because the diagnoses some of our patients carry are far less common than some of the more known ailments (such as diabetes or hypertension), our patients have typically been referred to the Institute with little background information or knowledge regarding the nature of their problems. Often, prior to arriving at our office many of our patients live in virtual medical isolation, unaware of any educational resources available to them, unaware of others who are burdened with similar problems. Such has been the experience of many of our patients who are referred to our office suffering with trigeminal neuralgia. These patients often feel very alone in their pain, not having access to others who have shared their predicaments. As you may imagine, starting from such a baseline makes the education process all the more challenging.

In recent years, however, we have encountered more and more patients who have a head start on getting educated about their problems. And we have nothing less than the "information superhighway" to thank for it.

While the Internet is perhaps used more commonly for entertainment pur-poses, online medical resources are becoming increasingly common and more commonly used. It is not rare for patients to come into our offices with pages and pages of information regarding their disease downloaded from vari-ous sites on the Internet. We welcome this pro-active approach they adopt. These patients are better prepared to discuss all of the different treatment options we have to offer, having read about them prior to their consultation. Some are members of Internet "chat-groups," or groups of patients all suffer-ing from the same disorder, who exchange stories, experiences, and insights online. These patients feel that they are better poised to tackle the challenges of surgery and recovery, and to continue on and help others whom they may meet with similar problems.

We wholeheartedly support any efforts that enable our patients to approach their medical problems with positive attitudes and to recover from their surgical procedures more effectively. It seems as if early education is one key to their success.

To this end, we now provide lists of resources to our patients to share with others in the community (see inset). Most of these resources are national organizations that provide literature and sup-port to patients with specific medical problems. These measures of support include referrals to local support groups or to online discussion groups, where patients can share their experiences with others who have gone through similar processes or who are facing similar challenges. We have provided a selected list-ing of such resources below and urge those of you who suffer with any of the disorders that are covered by these listings to contact the relevant groups and seek out as much information as you can.

We continue to hope that the process of self-enlightenment makes the process of healing a less arduous one.