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Roxanne's Story...

As a child, I had developed physically at an early age. Puberty set in around eight years old, although I did not get my cycle until age 11. I had already grown hair and breasts, developed acne and looked a lot older than my peers. My mother had taken me to a pediatrician who told her to feed me coffee to try and stunt my run away development. I don't know if this was pre-symptomatic of things to come, but in light of my Cushing's diagnosis, everything is suspect. I noticed a steady weight gain between 120-160lbs. throughout my early twenties, and despite many efforts to control it, was unsuccessful. By the time I married in 1992, I weighed nearly 180lbs! I was shaped proportionately and carried it well, but I was uncomfortable. Slowly that changed and my body took on the Cushing's shape it has today.

I still continued to gain weight and enlisted the help of several primary care physicians, who all attributed the weight gain to diet and lack of exercise. This could not be the case. I was hyperactive and loved to eat the right foods for healthy living. Meanwhile my husband and I decided to conceive and it took almost two years to do so. I gave birth to my son in 1997 and it was shortly after that the Cushing's symptoms hit me full force. Having only gained nine pounds overall in my pregnancy, it might surprise you that I weighed 239lbs. at this time. I was excessively fatigued with horribly body aches. I developed high blood pressure that doctors had trouble controlling. My periods became irregular and then stopped. I had horrible night sweats and would go for days with literally no sleep. I would eventually collapse and fall asleep, or what would be near unconsciousness. Then the cycle would start again. I had a constantly overwhelming feeling of anxiousness, paranoia and nervousness. The constant weight gain wasn't helping me cope with these emotions. My self body image was so low and as I started growing hair on my face, losing the hair on my head, losing the battle with facial acne and moving around like a geriatric patient with arthritis, I felt like I had lost total control of my personal appearance. I am thankful that the love, peace and grace of God surrounded me during all this and that He kept me from falling into a deep depression and gave me the strength to continue to seek answers.

My husband and I decided we wanted to have more children, but with an almost absent menstrual cycle, we knew we needed more help. I went to visit a fertility specialist who ordered a battery of test over a six month period in 2002. One of those test was a hystereosalpingogram (a test where contrast is injected into your uterus and allowed to flow out your fallopian tubes). This is a test to see if there are any obstructions in your tubes. What the technician and doctors failed to perform or inquire about was if I had any allergies to the contrast, which it turns out I did. The contrast not only burned the inner lining of my uterus, but throughout my fallopian tubes and other areas of my abdominal cavity. I ended up in an emergency room with doctors and nurses in a panic as to what to do with me because my blood pressure was so elevated. They wanted to admit me, but I told them that I was on medication, and I could just take that and continue on my way. Anyway, I visited my fertility specialist that day and she had come to the conclusion that from my blood test results (elevated testosterone levels, abnormal insulin levels and low reproductive hormone levels) I had PCOS and she placed me immediately on Metformin. My cycles started again the next month and I was pleased. She became a bit upset with me because I was satisfied to try and conceive again with my husband the natural way and she told me I was too old to waste time and needed to be more aggressive about my conception. And it wasn't because "I had good insurance." When she said that to me I knew she was promoting her business and not really listening to me or what my needs or wants were. The status of my health insurance was never an issue for me because I was looking for healing answers and not a quick, affordable pregnancy solution. I was obviously in a health crisis beyond infertility, but she chose not to deal with any of that. So she missed the proper diagnosis, even though all the puzzle pieces were before her eyes.

My primary care physician, as compassionate and caring as she was didn't see the whole picture either. She was trying to control all the adverse symptoms, and never ran any blood cortisol tests or consulted possible endocrinological avenues.

My husband got relocated to Los Alamos, NM for employment reasons and so we packed up and started our new lives here in May 2003. I decided that since I was on so much medication and under new health insurance coverage, I needed to establish a primary care physician relationship right away.

I walked into my new physician's office on May 9, 2003. He took one look at me and stopped. He immediately started asking me all these different questions about my family history, current symptoms and current medications. All the while he kept staring at me. Then he started what seemed like a neurological exam and was greatly interested in my eye movements, vision, cognitive changes I was aware of (e.g. memory), reflexes, etc. He then sat me down and said he felt there was something going on here beyond my individual symptoms. He was referring me over to the endocrinologist in his group practice and he was ordering an MRI of the brain. Needless to say I questioned why and he said that he thinks I have Cushing's Syndrome and depending on the MRI and my blood test I may have Cushing's Disease, a brain tumor. I had never heard of either condition and was defibrillating myself after receiving the news.

Well, as it turned out I had a 2cm diameter Excreting Pituitary Adenoma that could reasonably be removed with a transsphenoidal resection. Now I had to find a neurosurgeon. And found him I did! Dr, Andrew Metzger has been such a blessing in my life. I was frantic and so lost when I had to find a surgeon on my own. What do you look for in a neurosurgeon? I had to rely solely on the internet and the advice of family and friends. I mean, we were talking brain surgery! I met Dr. Metzger on August 17, 2003 and had the surgery on September 17, 2003, ten days before my 38th birthday. The surgery went surprisingly well. I suffered from intense diabetes insipidous immediately after surgery and my blood pressure shot to 215 over 124. They had me on hydrocortisone for fear of adrenal failure. I was in ICU for 4 days and moved to a neurological care floor for another three days after. I went home where my family took care of me and I felt well. There was much optimism for a complete recovery. I started to lose weight and my blood pressure was within normal range on my meds.

Then by December 4, 2003, I noticed that my symptoms prior to surgery had returned. My doctor was once again having trouble controlling my blood pressure and my blood cortisol levels were up again. A December 16th MRI showed no signs of tumor, so things were a bit confusing. We waited another month and my endo ran some more blood tests. She felt certain I had residual tumor. I consulted Dr. Metzger again in March and he had a more detailed MRI run that involved a stereotactic headframe. He heads the Gamma Knife Center here in Albuquerque, New Mexico and decided to present my case to their surgery review board to see if I was a good candidate for Gamma Knife. He also had a plan to attend a neurosurgical conference in Vienna, Austria where he eventually presented my case to a world renown pituitary tumor expert, Dr. Prasad, who agreed with this course of treatment. I had the Gamma knife done on June 10th and so far my blood cortisol levels remain unchanged. My blood pressure is still high while on medication and there is a great concern as to resolving the high blood cortisol level in my system. I am facing possibly more radiation treatment or surgery to remove my pituitary or exploratory surgery to look for more tumor.

Dr. Ed Laws in Virginia is who my surgeon would refer me to to have the exploratory surgery. My endo and neurosurgeon feel it may be too soon to see any benefits from the Gamma Knife yet. This week has been difficult emotionally because I have reached a point where I am in this recovery holding pattern that makes me feel I am no longer in any kind of control over the Cushing's. I have all the symptoms with no relief in sight. I was recently placed on spironolactone to help with the symptoms, but it takes at least a month on this medication before you start to see results. I had to let myself be a bit weak and vulnerable this week and say to myself that part of what has fatigued me is acting strong when I really don't feel that way. That's why I decided to join this chat forum and share my story and gain strength and hope from others who a suffering and triumphing over this disease. Thank you all and I hope I can call you friends. Bear with me as I learn to use this website and start the healing inside and out.

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