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I am a 52 year old woman who has been living on the Cushing’s rollercoaster of life. For three and a half years, I struggled with getting a diagnosis from eleven different doctors and as I dead ended with each doctor, though my symptoms were many, I was turned away with no referral and left to my own initiative to continue to seek for help. My symptoms were many. Some of those were: high blood pressure, no periods, spontaneous bruising throughout my body, moon-face, thinning of hair, chronic headaches and blurred vision to name a few and despite the severity of these symptoms, I was turned away from every doctor, provided with no alternative direction to take, but only given a script to see a psychologist, as it was suspected I suffered from some kind of emotional disorder.
The consequences of this multi-symptom disorder certainly does lend itself to significant emotional and psychological devastation, yet even today, in the best medical centers that are equipped to deal with the physical needs for Cushing’s disease, (surgery, radiation, drugs) I've never been offered or provided with any support for the emotional burdens that come with the entirely altered chemistry one deals with after surgery and/or radiation. Those who've undergone such surgery or radiation no longer produce their own critical hormones which are necessary for health and survival, thus creating a tremendous emotional toll on a patient as they try to adjust to a feeling that is very difficult to even describe.
Having endured two invasive transeptal transsphenoidal pituitary surgeries to remove tumor cells on the pituitary gland (seven years apart), then followed by Gamma Knife Radiation after a third occurrence of Cushing’s, I am left with no pituitary function and all of those hormones that were naturally created and available to my body are no longer present...only in synthetic form through oral or injected vehicles.
As a patient who has had to be very persistent in obtaining not only the original diagnosis, but even of my recurrences of this disease, I urge the medical community to raise awareness about this extremely complex and debilitating illness. Whether it results from taking excessive amounts of steroids to treat various illnesses (like lupus or arthritis, etc) or from an ACTH producing tumor on the pituitary gland that over-stimulates the adrenals thus producing excessive amounts of cortisol, there are many many doctors who are not aware of this complex, multi-symptom disorder.
Had I been diagnosed early on, when I struggled to find out what was wrong with me for three plus years, I may have been cured after the first surgery. I will at best, be in remission, and will hopefully live out my life striving to obtain a semblance of balance with the synthetic hormone replacement currently provided.
I am grateful to be alive and hope that no one else has to experience the torment and suffering that comes with lack of appropriate action and diagnosis due to the complete unfamiliarity of such a debilitating illness.
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