Importance of patient participation using information from the Internet

Friday, March 23, 2012

Patient input and participation in one’s care are extremely important. As a physician who was diagnosed with throat cancer I encountered many instances where my physicians failed to diagnose my condition and my input was instrumental in improving my care. That input often came from information I found on the Internet.

One example relates to the blood pressure I developed 16 month after receiving radiation treatment to my neck. I was initially labeled as suffering from “essential hypertension”, the most common cause of high blood pressure in individuals over the age of 65 years. I suspected that the radiation treatment I had received lead to the development of hypertension, but my physicians dismissed it. I started to check my blood pressure myself and noticed that it frequently spiked to over 190/110. After my physicians were unable to come with the correct diagnosis and treatment for this unstable blood pressure, I started searching the Web for answers. I was fortunate to discover a rare entity called “paroxysmal hypertension” that can result from radiation damage to the carotid artery baroreceptors. Only after I contacted the physician who researched that topic did I finally start to receive adequate treatment for this condition.

Another example was a rash I developed while getting treatment with a beta blocker (Inderal). Skin biopsy labeled the rash as psoriasis. Both my cardiologist and dermatologist did not make a connection between the medication I was taking and the rash. While searching Google Images for pictures of a psoriatic rash I found a picture of a rash labeled as “beta-blocker psoriatic like rash” which lead me to suspect a connection between the medication and the rash. When I consulted my dermatologist and cardiologist about this condition they both admitted that they did not think about it because it was very rare. Happily in my rash subsided after I stopped taking the medication.

My experience as a patient taught me the limitations of medical knowledge and experience of many of my colleagues. They simply do not always know all the answers or do not think about them. It is left to patients to help themselves by searching for the right answer. It is also essential to remember that even those of us who have medical knowledge should only assist the experts in treating us and not do it alone.

Itzhak Brook is a Professor of Pediatrics at Georgetown University School of Medicine and author of the book My Voice: A Physician’s Personal Experience With Throat Cancer and In the Sands of Sinai: A Physician’s Account of the Yom Kippur War.  He blogs at My Voice.


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