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Alicia (Revering) Kniefel
Feb 4, 2016 Latest post:
May 3, 2018
Alicia was diagnosed in May of 2009 with Cushing's Disease which is a rare condition involving a benign Pituitary Tumor that spontaneously develops and secretes the hormone ACTH in excess, which then signals the Adrenal Glands on top of the Kidneys to secrete excess Cortisol; "The Fight or Flight Hormone". (Cortisol helps regulate blood pressure, the immune system, blood sugar, and helps regulate the metabolism of proteins, carbohydrates, and fats).This type of tumor affects 10-15 people per million each year and is most commonly found in adults between the ages of 20 and 50 years of age; Women account for more than 70% of these cases. This condition can be difficult to diagnosis and is often delayed. Alicia had begun a series of hormonal tests including, blood work, urine samples, and radiological imaging to finally have an answer to her many symptoms that had begun developing as early as 2008, and now looking back at her pictures and the physical and mental characteristics she possessed she was a "classic" Cushing's Disease patient.
Signs and Symptoms of Cushing's Disease Include: Moon Face - The face becomes round and may look flushed. High Blood Pressure- Almost all patients with Cushing's have high blood pressure because of complex actions of cortisol in the kidney and on blood vessels. High Cholesterol - The high blood pressure interacts with high cholesterol levels that are often seen in patients with Cushing's to increase the risk of atherosclerosis. High Blood Sugar - Diabetes or Insulin Resistance is common in patients with Cushing's. As many as 3% of uncontrolled diabetics may actually have Cushing's. The disorder is due to the effects of cortisol on insulin action and handling of glucose. Truncal Obesity - An accumulation of fat around the abdomen, neck and collar bone. Muscle Weakness - Legs and arms lose muscle mass and appear thin in comparison to trunk. Backaches - Pain in neck shoulders and back are common. Buffalo Hump - Fat can accumulate at the back of the neck and between the shoulder blades. Skin Changes - Skin may become thin, fragile and easily bruised. Acne may develop in all ages. Straie - Bluish-red stretch marks may form on abdomen, breast, thighs, upper arms and buttocks. Weak Immune System - Poor wound healing and increased chances of infections. Menstrual Periods - Periods may be irregular or cease. Labedo - Decreased fertility and/or sex drive. Hirsutism - Abnormal hair growth on face. Balding - Hair at temples and on the scalp may become thin. Emotional Disturbances - Mood swings, depression, irritability, confusion, and poor memory. Extreme Fatigue - Weakness and fatigue during the day and difficulty sleeping at night. Osteoporosis - Fragile thinning bones. Bones lose their density and may fracture or break. ***Cushing's Disease is not the same as Cushing's Syndrome. Cushing's Syndrome refers to a general state of excess levels of cortisol in the blood, whereas Cushing's Disease is an excess level of Cortisol in blood due to the Pituitary Tumor hyper secreting ACTH to the Adrenal Glands.
On June 2, 2009 Alicia underwent brain surgery at Mayo Clinic in Rochester, MN under the care of Neurosurgeon Dr. John Atkinson and Endocrinologist Dr. Dana Erickson. Dr. Atkinson performed a surgical procedure called "Transnasal or Endonasal Pituitary Adenomectomy". Using a special microscope and very fine instruments, the surgeon accessed the pituitary tumor through her left nostril, through the sinus cavity, and up to the pituitary gland. This is an extremely delicate procedure and needs to be done by an experienced surgeon; this type of surgery is often done at only a select number of institutions around the world. The success, or cure, rate of this procedure is over 80% when performed by a surgeon with this extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After pituitary surgery, the production of ACTH drops below normal and the patient is placed temporarily on a synthetic form of cortisol (such as hydrocortisone or prednisone) for less than a year; as this was the case for Alicia.
2010-2012 Alicia was able to have regular follow up appointments with her physicians both at Mayo Clinic and at Allina and have great success in reversing almost all of her previous symptoms including her biggest battle; the excess weight she had gained. By 2013 she had dropped almost 80 lbs of the 100 lbs she had gained and her follow up visits were becoming fewer and further between because it was thought she had reached full remission...In 2014 Alicia began having intermittent fluctuations in her weight but felt that this could just be from stress related to her nursing job(s), family dynamics, selling her townhouse and buying and moving into a new house with Ben; etc. Later in December of 2014 - Ben and Alicia became engaged and their plan was to get married sometime in 2015 and not have a long engagement. Alicia was excited not only to marry her best friend but to maybe start another chapter in her life; like maybe motherhood...before she would say she's too old - haha. Ben and Alicia were married on September 26th, 2015 in Bloomington, MN surrounded by over 250 family and friends; it was a warm, sunny, & beautiful day! As 2015 was ending and the new year was approaching Alicia was looking forward to starting 2016 with a change in her stress levels since the wedding and everything that goes along with that was over. She wanted to focus on her eating habits and push herself to get back into shape and lead a more healthier lifestyle in preps of maybe becoming pregnant but she was just so frustrated with the continued weight gain of 50+ lbs over the last 2 years with most of it being in 2015; she found herself feeling depressed and fatigued like she once did back in 2008-2009.
Which leads us to January 2016.......Has the Cushing's Disease Returned is the Question? YES the Pituitary Tumor is Present Again :(
Please see Journal Entries for Updates from this point.
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