The PTC Primer...
Chapter One - Introduction

Acknowledgements

This book has been alive for a long time in the minds of myself and my sister Jennifer Duncan. It's rewarding to both of us to see it become a reality.

Jennifer began this long journey (which resulted in what you are reading) by deciding to become an advocate for those who live with pseudotumor cerebri. She started the first support group for patients of PTC within the United States in 1992. I joined forces with her in 1995 to create a written venue (our newsletters) that shared information about pseudotumor cerebri to all who asked for it. PTC has taken a toll on Jennifer's health; she is one of those frustrating individuals who do not have good results with treatment. Yet, in spite of being in constant pain and disabled by this disease, she has managed to live a rewarding life. She is a testament to the tenacity of human will.

A warm 'thank you' to all of you who have contributed donations to our non-profit organization.... your generous giving has been used 100% for printing and mailing costs. We couldn't do this without you.

Extra recognition must be given to the Lions Club in Tionesta, PA for their many donations. Their goal is to save vision, and their donations to us have gone far in allowing us to educate PTC patients about the importance of monitoring vision before blindness becomes an issue.

Last of all, a very special 'thank you' to Marie Nygren and Dr. Susan Benes for reviewing this book. Marie provided editorial help, and Dr. Benes offered invaluable assistance regarding the medical aspects of PTC. Their contributions assured us of offering you a superior product.

Sondra Johnson

Welcome.

We hope this book will help you find answers about the disease pseudotumor cerebri. The information contained within these pages is compiled from several years of newsletters, medical articles about PTC, and conversations with doctors and patients.

Pseudotumor cerebri is a relatively rare disease. The majority of PTC patients are women of child-bearing age with a tendency to be overweight. However, there are PTC patients of all ages- male and female, and all weight ranges- from obese to downright skinny.

Pseudotumor cerebri is also an individualized disease. Each person responds differently regarding symptoms, treatment, and side effects. There is no "standard" for how the condition will appear, how long it will last, whether it will come back, or the degree it will impact your life. There are people who have success with medication or treatment, and their PTC goes away. There are others who become disabled with this condition, and treatment or surgery is ineffective. Remember that what you are experiencing may not apply to another pseudotumor cerebri person. This can be cause for relief or despair, depending upon the state of your current health.

If you are a PTC person with chronic problems, life is complicated, but not over. You can live a full, rewarding lifestyle; there are others in your same shoes doing just that. Your outlook and attitude are crucial to living successfully with this disease, and you will need to learn how to adjust your life to accommodate your condition. You are "normal" when you compare yourself to yourself; but you are not "normal" if you are comparing yourself to a healthy, energetic person. Trying to live at the pace of such a person is a recipe for depression and failure. If you can adjust your lifestyle to a slower pace, one that your body can manage, you can be fulfilled (and you'll have the time to stop and smell the roses!).

The Pseudotumor Cerebri Support Network-
Where we came from...

In November 1992, nine people suffering with a disease called "pseudotumor cerebri" gathered together in Columbus, Ohio for mutual support. Started by Jennifer Duncan with the support of Dr. Susan Benes, the group was called PTC: Patients Taking Charge. It was the first support group formed in the United States for this rare disease. Meetings were held six times a year and focused on living with pseudotumor, often featuring a guest speaker active in the medical community and involved with PTC.

Due to the debilitating effects of the disease and the conflict of time to organize the meetings, the bi-monthly support group disbanded in September 1994. Jennifer continued to talk to people and gather information relating to PTC. The National Institutes of Health started to refer callers who were looking for information about PTC to Jennifer. She came to realize there was a desperate need for information about pseudotumor cerebri that was written for the layperson (in other words, take all that technical terminology and translate it into real English!).

In 1995, Jennifer joined forces with her sister/writer Sondra Johnson to start the Pseudotumor Cerebri Support Network. Our non-profit organization offers information about PTC to physicians and PTC patients.

Pseudotumor Cerebri Support Network-
What we do...

· We produce this book and web site!

· We produce yearly newsletters offering information and input regarding pseudotumor cerebri.

· We are a non-profit organization- all proceeds go directly web site costs.

Donations are gratefully accepted- it keeps the information going out to those who need it. We thank the Lions Club in Tionesta, Pennsylvania for their many donations. Their dedication to our Support Network enables us to send forth vision-saving information to those in need. We also sincerely thank the many individuals who have given donations. By helping us, you are making a difference.

· We also have an E-mail address for all you computerphiles. You can contact us at sondra@sprynet.com

· And speaking of the mail, let us know how you're doing- are your treatments/surgeries working, is there new information you're privy to, do you have effective ways you have found to cope, and so on.

What's In A Name?

Ever wonder why your disease has three names even though it's uncommon enough to be considered "rare"?

The original name was Pseudotumor Cerebri (PTC). A literal translation for PTC is "fake-tumor/ brain"; a term coined in 1904 by a Dr. Nonne. The symptoms of headaches, visual problems, and increased cerebral spinal fluid were also symptoms of a brain tumor. However, there was no brain tumor to be found, hence the "fake" tumor-name. The problem with this name is it leads people to believe that PTC isn't a "real" disease. Because of this misconception, family members (and sometimes doctors!) treat PTC patients as if they need a psychiatrist.

The name Benign Intracranial Hypertension (BIH) has a literal translation of "mild/ in-the-head/ excessive-high-pressure" (a lot of words!). This name was created in 1955 by a Dr. Foley and it continued to be used though the mid 1980's. The word "benign" was used by some because spontaneous recovery could happen and by others because surgery and studies did not find a malignant brain tumor... but it didn't take into account the head pain and serious threats to vision. The problem with the term BIH is: some patients have known causes for this condition that need specific treatments, such as certain infections and inflammation.

Idiopathic Intracranial Hypertension (IIH) has a literal translation "unknown-origin/ in-the-head/ excessive-high-pressure", and is a term used in 1992 by the North American Neuro-Ophthalmology Society (NANOS). The word benign was changed to "idiopathic" when the disease was determined to be more serious in nature.

('Great," you say, "now the person on the street thinks my disease is either mild/no-big-deal, or something to do with being idiotic!") Although the controversy continues of which-name-to-use, we chose to go with the original.

Progress is being made from the days of "it's a fat woman's disease," "The only complication is possible loss of vision," and "What's the problem? It's just a headache!" In 1988, pseudotumor cerebri was described "as a relatively common neurologic illness" in Archives of Neurology.

Amazing Facts: In 1996, there were no Internet sites that listed "pseudotumor cerebri" as a search word. A search in 2000 listed 1867 sites with the same search criteria- amazing! In August 2001, our web site received 8,227 hits on it! (Of these, approximately 1200 were "serious" hits where people where spending time and reading information.) Patient input and physicians' knowledge are being melded into a valuable tool and source of support for those who seek it.

Our goal with this book is to assemble the best of relevant information into a single source. The ultimate goal of a person who lives with pseudotumor cerebri is to get rid of it; if that can't be accomplished, the next goal is to live a personally rewarding life in spite of PTC.

We hope this book helps you to do just that