On Saturday, May 14, 2016 the Barrow Pituitary Center, in Phoenix, AZ, held a patient education day. A number of CSRF members from Southern California and the Phoenix area joined Dawn Herring and Karen Campbell at the event. The meeting of about 125 patients was very informative, as was the opportunity to talk with other patients. Most of the sessions were recorded and are available through the Barrow website.
To start things off, Dr. Andrew Little, Barrow pituitary neurosurgeon, gave a presentation on the anatomy of the pituitary gland, complete with 3D images. The 3D pictures were incredible! Next, Barrow pituitary neurosurgeon, Dr. William White, gave an overview of the diagnosis and treatment of a variety of pituitary tumor types. Dr. Anna Boron, Barrow Pituitary Center endocrinologist, discussed hormone management pre and post-surgery as well as the different medications used for each tumor type if surgery was not successful. Dr. Boron also discussed the need for stress dosing in cases of adrenal insufficiency.
The next presentation titled Take Control of Your Pain! was given by Dr. Angel Rigueras, a physiatrist in Flint, MI, McLaren Regional Medical Center. Physiatrists focus on Physical Medicine, Rehabilitation and Pain Management. In this very interesting talk, Dr. Rigueras discussed the definition of hurt versus pain, the need to consider the impact of pain in patient’s life and activities. He also discussed different types of pain and different treatment options, from medications to alternative treatments through invasive options. If pain is influencing your life, I would encourage you to listen to this presentation as you may discover some treatment options that you were not aware of.
The talk titled How to Manage Headaches was given by Dr. Kerry Knievel, a neurologist at Barrow. Dr. Knievel pointed out that one third of patients with pituitary tumors experience headaches. She also discussed different types of headaches and that the type of headache can determine how they are treated. Dr. Knievel discussed the types of medications that can be used and other treatment options including vitamins. She also discussed the need to be careful with too many medications as this can lead to rebound headaches that are actually caused by too much medication. If you suffer from headaches, I would encourage you to watch this presentation.
Dr. William White then discussed the Benefits of a Center of Excellence/Multidisciplinary Approach to Patient Care. A Pituitary Center of Excellence designation was proposed in a 2012 (1), but at the present time, there is not an over-seeing agency. Dr. White then used a series of selfie pictures and worked his way through the different specialties used for patient care. In discussing pituitary surgery, he suggested that patients choose their surgeon based on their experience, not on whether they use a microscopic or endoscopic approach. He also discussed the use of radiation techniques such as Gamma knife and Cyberknife.
Dr. Catherine Jonas, LMFT and consultant with the Pituitary Center at Cedars Sinai, discussed My Role in Coping with a Pituitary Disorder. She discussed five different coping types; the fighting spirit, avoidance and denial, fatalism, helpless and hopelessness, and anxious preoccupation. She encouraged us to think about our coping mechanism and recognize what is within our control and what is not. Those things within our control involve decision making, problem solving, information seeking, and choosing a physician. Uncontrollable things include the fact that there is a medical problem and may require adjusting our thinking. She asked us to notice if we have rational or irrational thoughts, in other words, are our thoughts based on fact and if not, suggested ways of rephrasing the thought which can influence our behavior. I would encourage everyone trying to cope with illness to listen to this presentation.
We then divided into different groups for discussions (these were not recorded due to privacy). The afternoon continued with one acromegly patient, Froggy, and one Cushing’s patient, Margaret, sharing their stories.
The afternoon concluded with brief presentations from patient support organizations including the Magic Foundation, the Pituitary Tumor Network and the CSRF. For CSRF, Karen Campbell covered a bit of our history, services and activities while Dawn Herring pointed out the need to be “seen and heard” from our medical providers and by others in our support system.
(1) Neurosurgery. 2012 Nov;71(5):916-24; discussion 924-6. Pituitary centers of excellence. McLaughlin N, Laws ER, Oyesiku NM, Katznelson L, Kelly DF.
Summarized by Karen Campbell, Summer, 2016
Editor’s Note: The day also included a talk on “What’s a Biome and Do I Need One”; this presentation, presented by Dr. Yashar Kalani, Barrow neurological Surgery, was not recorded.