CSRF Members' Letters - Male Members

I was finally referred to a couple of specialists. One of those doctors was an endocrinologist, Dr. Linarelli. He ran a few tests on me and thought he knew what could be wrong! I was in Cabo San Lucas, Mexico at the time the results came back. Dr. Linarelli called me in Cabo, as he was leaving for Italy in a few days and wanted to see me before he left. My wife and I packed up, drove straight back to San Diego and met with Dr. Linarelli. He tried to explain Cushing’s to us. He said he had one last test to perform on me, an MRI, and if a tumor showed up in the pituitary, it was Cushing’s Disease. When the results came back he had already left for Italy so I saw another doctor who was filling in part time. Sadly to say, this doctor knew nothing except to tell us that I did have Cushing’s Disease and he knew of no one who could help me. I felt alone and depressed.

My daughter went on-line and we found Dr. Wilson at the University of California, San Francisco. We went up, met with him and got his opinions. Unfortunately, my insurance would not cover the operation I needed in San Francisco. When Dr. Linarelli returned from his trip we again met with him, and once again he was helpful. He knew of a few surgeons in San Diego and one in particular, Dr. Randall Smith, who specialized in operating on pituitary tumors. We met with Dr Smith and he immediately put me at ease. He said not to worry about anything at all. I was to think about getting better and everything else was his job.

My surgery was on September 22, 1998. The surgery went well, however I stayed in the ICU longer then expected. My blood pressure would not stabilize for a few days and I had a couple of minor problems. Not long after the surgery, I went through six weeks of radiation to shrink the rest of the tumor that could not be removed during surgery. The radiation was five days a week, for six weeks. When this was all over, Dr. Linarelli turned me over to Dr. Eric Gold, another endocrinologist in San Diego.    

Dr Gold was one of the best doctors I ever had the pleasure of knowing. He spent a lot of time with me and helped me a lot until his untimely death this past New Year’s Eve. Ironically when I heard of Dr Gold’s passing, I also heard that Dr Linarelli had passed away as well. At this writing, I am just starting with a new endocrinologist.    

In April of 1999 I began to have double vision. I was referred to Leah Levi, M.D., Clinical Professor of Ophthalmology and Neurosciences. She is a wonderful doctor and spent a lot of time with me. The muscles in my left eye were damaged when I had the radiation treatments. In July, I had surgery on both eyes and I am thrilled to report that it has dramatically helped the problem. I do wish I’d had the surgery years ago!  Since my Cushing’s, I’ve had colon surgery, some teeth removed and gum surgery; all related to Cushing’s.  I keep up on all my doctor’s visits, take my medications, and do all the testing that goes with having had Cushing’s.    

San Diego hosted the Endocrine Society’s annual convention in June. I helped at the Cushing’s Support and Research Foundation booth, and learned a lot. I also met Karen Campbell, Director, and Louise Pace, Founding President of the foundation. They are both very hard workers for the Cushing’s Foundation and it was a pleasure to meet and work with both of them. I hope to keep up periodic local meetings here in San Diego. Please do let me know if you are interested.

Back to Top

Code: 1197 Spring 2005
I remember one afternoon my son came home from his first day of first grade and said to me….”Mommy, what does “chubby” mean? Immediately, my heart sunk…already at the age of six my son was learning the cruel reality of how society views overweight individuals, even young children.

At the age of six, my son was already showing obvious signs of the classic look of a Cushing’s patient, although I had never heard of the disease before. In his kindergarten year, and every year after, his weight gain increased by approximately 30 pounds per year, despite the fact he was playing basketball, baseball, and skateboarding. I watched his weight like any other concerned mother would do, and tried to manage it on my own. Soon, it was apparent that something was very wrong with my child, however I couldn’t really pinpoint what it was.

He was complaining of headaches, and also he was extremely stiff every morning. He would complain of his joints aching, and he reminded me of a little old man first waking out of bed. I went to our local pediatrician, and he looked at Stephen, and was concerned with the weight gain. He referred Stephen to a specialist, and in turn began the unending circle of numerous doctor and hospital visits. The endless poking and prodding by doctor after doctor for over two years was incredibly disheartening. I had noticed that Stephen’s height had not changed during this two year period, and I kept telling the doctors over and over my concerns. Several doctors told Stephen, that he ate too much, and they accused me of over feeding him, and sneaking food to him. They referred me to several nutritionists, and even suggested that Stephen have a personal trainer to get the weight under control. Several comments were made over the course of the two years that Stephen may have Cushing’s, but all the doctors rejected that thought, and said that since Stephen was a male and a child, that it would be extremely rare. The doctors had ordered urine free cortisols, dex tests, and several blood analysis tests, only to tell me that the likely hood of Stephen having Cushing’s was so rare that all completely dismissed it.

With the help of the Cushing’s Support and Research Foundation they were kind enough to connect me with a family in Australia who had a boy recently diagnosed with Cushing’s. I immediately contacted them, and instantly realized I was not alone, and that the mother had gone through the exact same stress of fighting to manage her son’s health care as I had. With the constant support from this incredible family, I found the strength to not give up and keep fighting for the answers to my son’s illness. CSRF also referred me to the brain tumor center at San Francisco University, and finally the correct 3d MRI’s were ordered which proved a tumor on the left side of Stephen’s pituitary gland. They informed me to contact the National Institutes of Health, and speak with Dr. Chorusus. Within a month of contacting the NIH Stephen and I were on a plane to Maryland, and soon after the correct diagnosis was confirmed. “Cushing’s Disease”. Stephen in fact did have an ACTH producing tumor on his pituitary gland. Stephen spent almost a month at the NIH, and under went transsphenoidal surgery in September of 2000. Although he was quite ill for several months afterward, and remained on replacement therapy for almost two years, he beat the odds of having this terrible disease. Stephen is now almost 6 ft tall, and is a happy healthy 13 year old, who enjoys life, and has learned the gift of compassion from his experiences of fighting this disease.

I truly believe without the help of the CSRF and the Aulbury family in Australia my son would not be here today. My undying gratitude goes out to the National Institutes of Health and their incredible staff of Dr. Chorusus, Dr. Stratakis, Meg Keil, and the superb nursing staff, whom saved Stephen’s life.

For anyone out there who is experiencing the pain of fighting for your loved ones health, don’t give up! The answers are out there, and there are people who are placed in our lives to guide us through. If there are any mothers who would like to contact me for support please feel free to!

Back to Top

Code: 1175 Spring 2005
When I look back on things, I first noticed a problem with weight gain in the winter of 2000. I continued gaining and began filling out more in my face and middle through that summer and into winter 2001. During that time I also started having sleepless nights regularly. My family doctor tried lots of sleeping pills until I got tired of that and gave up. I was feeling very bad with the extra weight, so since I was up at 2 a.m. every morning, I had the time to exercise. I was exercising and eating very healthy. If I hadn’t had Cushing’s, I could have been on the cover of Men’s Health and Fitness (maybe!). My family also had the cleanest house on the block and we were getting packages from Ebay weekly (there wasn’t much more I could do between 2 & 7 a.m.). I thought this was normal for a long time. In the summer of 2002 I got an anal fissure. A simple surgery should have fixed this, but I had three and was out for the whole summer due to the slow healing. I was back to exercise and diet by winter 2002-2003, and even managed to lose a little weight (5-10 lbs that would have been 40 for a normal person!)

In June 2003 my wife and I went to Cedar Point amusement park and my ribs hurt after the first day, but I kept going. After the trip I tried moving heavy shelves at work and that sent me doubled over to the floor. Things only got worse from here. I was very over weight and in the matter of months I got the hump on my neck, stretch marks allover my belly, armpits and chest. We had been to many doctors who sent us to other doctors. I was still not sleeping well and things were getting worse. I would get up in the middle of the night in so much pain that my wife would take me to the emergency room. We would have to call someone to come and sit with our kids and off we’d go. This happened at least four times. They would run tests, tell me to lose weight and give me a shot of painkiller and we’d go home. At one of the ER visits they did a chest X-ray and thought I had been in an accident because I had 13 broken ribs. This sent us to another doctor who thought I could have bone cancer. I was very depressed by now and weighed about 245 lbs compared to my normal 175 lbs. I quit smoking in November 2003 since I got winded just walking to another room and my chest hurt constantly.

In Dec. 2003 my family Dr. finally set up an appointment at the I.U. Medical Center. Dr. Melissa Cavaghan (best Dr. in the whole world!) recognized the symptoms of Cushing’s the first time she saw and talked to me on Jan. 14, 2004. This was followed by all the tests; blood tests, MRI’s, urine collections and saliva collections until they could get the answers they needed. They finally did and I had my pituitary surgery March 1, 2004. I was so happy with my endocrinologist that I stuck with her even through we were 2 hours away. The first few months after surgery I was worse. I was depressed, afraid to see anyone, still in pain and cried constantly. I still had ER visits after surgery. Twice for terrible depression and then for seizure-like episodes that were caused by too many medicine changes. We soon learned to only change one thing at a time. I was fortunate enough to work for my family and took a lot of time off. I could not have done this without my wonderful wife, great family, good friends and most of all, Jesus Christ. Everything that’s happened to me has brought me closer to the Lord, closer to my wife and closer to my kids who are now the ages nine, five, and three. I hope that God can use my testimony somehow to help someone. This experience has changed my life for the better and I am thankful for it. There is a light at the end of the tunnel and that light shines from our savior Jesus Christ. Please don’t give up! When you don’t think you can do it, take out your Bible and read through the Psalms. Pray and give thanks to God that you’re alive. I am still taking 25mg of Cortef, Effexor and Clonazepan. But, I’m so thankful I’m here to be writing this the week of March 1st—one year after surgery!!

Back to Top

Code: 1161 I am the luckiest man alive. I'm writing this letter after almost losing my life. Cushing's has changed me as a person. My life will never be the same. I had Cushing's for 8 years before I was diagnosed. I knew there was something wrong, but my GP said I wasn't taking care of myself. Not exercising enough or eating right. The first part of my body that was affected was my eye site. I am one of the few who have lost site from Cushing's. I was ill all the time, cold's, flu, anything in the air, I would catch it. I put on 50 lbs. In my face and abdomen. My blood pressure was 145 over 110.

Finally, I could not walk and went to an old doctor I knew. He is an orthopedic surgeon. He took x-rays and found I had multiple fractures throughout my legs. He then sent me to a rheumatologist, where I was diagnosed. After dozens of doctors - finally! I had a pituitary tumor. But the damage was already done - I have loss of site in my left eye, Avascular Necrosis, Osteoporosis, Osteoarthritis and have had 5 major surgeries (left hip replacement, left wrist, tumor surgery and 2 left foot surgeries). I am still on many medications but have my life back after 3 years of not knowing what my future would be. I am back to work, in the gym and love to play golf! I hope I can help support or give someone hope. Thanks for the opportunity to tell my story.

Back to Top

Code: 895 Date: November, 1999 MALE
I was diagnosed by Dr. Govier, urologist, at Virginia Mason Medical Clinic, Seattle WA in March of 1992, because of lack of sex drive pointed out by my wife. My surgery was in May of 1992 (transsphenoidal), followed by low-dose radiation by Dr. Nussbaum. Some of the tumor could not be removed because of the proximity to the carotid artery.

I experienced weakness and more Cushing's symptoms in 1994 and an MRI indicated growth of the tumor. They administered five fractions (doses) of stereotactic radial radiation. In 1996 my right eye had double vision and eventually the lid shut. Apparently three nerves were affected and burned by radiation. I was taking Nizoral to suppress the ACTH cortisone.

In spite of some clumsiness and muscle weakness, I walked six miles per day, swam three days a week and felt reasonably upbeat. In June of 1999 I got weaker and anxious. I knew something was wrong. It's obvious when cortisone is flooding your system! The blood check showed potassium was low. The Nizoral apparently quit working and was actually stimulating the adrenals. My doctor consulted with an endocrinologist team at Virginia Mason. I had my adrenals removed. I'm still recovering with two pills and promises!

I hope "third time's a charm" with nine grandchildren to enjoy! I am currently taking Prednisone and Metoprolol (blood pressure).

Back to Top

Code: 782 Date: Fall, 1997 MALE
I was diagnosed in April, 1997 and had transsphenoidal surgery on April 23, 1997. The removal was successful! I had a follow up MRI on August 8, and there was no trace of the tumor. My symptoms first appeared in 1995 and by 1997 the disease was in advanced stages. I had a buffalo hump, moon face, my neck and collar were enlarged, and my stomach increased significantly. I experienced bruising and my skin was continuing to break open and bleed. My ribs fractured and my muscles were extremely weak.

Since my surgery, I have seen a significant improvement in my physical condition. My buffalo back, neck and collar, waist size and moon face have reduced. My skin condition is back to normal. I am still experiencing extreme back pain. After consulting an orthopedic surgeon, I am going through with physical therapy.

I am very athletic and combined running, swimming and cycling on a seven day a week basis. I am now restricting to swimming which I do six days a week, but I don't have the energy to do any long workouts. After my surgery my endocrinologist put me on 5mg per day of prednisone, and I am now alternating between 5mg and 2.5mg.

Back to Top

Code: 729 Date: Spring, 1997 MALE
I am 15 years old and would love to talk to someone my age. I have spent hours researching and reading about Cushing's after being diagnosed in January of this year. I've talked to a lot of adults but feel it would be more helpful talking to someone my age. I am scheduled for tests at the National Institute of Health this month and will be admitted for two to three weeks. I found you on the Internet and appreciate all the information on Cushing's.

Back to Top

Code: 723 Date: Spring, 1997 MALE
Prior to the onset of Cushing's, I led a very healthy and active life and was by all accounts sound in mind and body. Early indications were subtle…an increasingly pudgy abdomen and face that wouldn't trim despite a healthy diet and consistent exercise, and small distinct stretch marks below my navel. I tore a disc, bruised easily and simple wounds would take forever to heal. I retained excess fluid and felt pain in my hips and knees after just one flight of stairs. I had stress fractures in my ribs. I was steadily gaining 5 lbs. a year, mostly in my abdomen. I developed the classic "moon face" and began to notice that my limbs had lost any tone they once had. I have always believed that we are each responsible for our own physical and spiritual well-being. Somehow, on both fronts, I was failing myself. Despite my best efforts, my energy was slipping and my spirit was fading. I tend to ignore discomfort and generally only seek outside help when urged to do so by others. Despite two "bare all" physicals during this period, the diagnosis was that I was just getting older and needed to take better care of myself.

At my request, I was tested for diabetes and thyroid, and had a urology work-up. I was determined not to quit, so I went back for an endocrine work-up, having seen in books many parallels between my symptoms and glandular disorders. My AM cortisol levels were ten times the normal range, my PM levels were equally alarming. In August of 1996 my endocrinologist told me I was a classic Cushing's patient. I felt a great sense of relief that I had a disease with a name! In one 45 minute meeting, I had been absolved of five years of guilt and self-recrimination. At that point, I gave into Cushing's and accepted its place in my life.

My pituitary tumor, on the left side, was diagnosed from the Petrosal Sinus Sampling (PSS) and my surgery was in November of last year. At first, my insurance limited me to a surgeon who performed limited transsphenoidals, so we appealed and won!! Seven weeks following surgery I was still washed out until l:00 PM or so. I experienced headaches and had very little appetite as nausea was with me 24 hours a day. Ten weeks after surgery, I felt well enough to begin exercise again. Lap swimming and nautilus weight-training three times a week for the past two months, has given me a solid foundation upon which I can build. It is exciting to shed weight, build strength and feel the energy return.
I don't hate my General Practitioner for missing the diagnosis, many doctors do. I do fault him, however, for not listening to me….and for ignoring my instincts. He denied himself what could have been his best diagnostic tool.

Of all the afflictions we face as humans, I feel fortunate to have had one that comes with a cure. Ultimately, it is the love and support of friends and family that has made this trying experience bearable.

Back to Top

Code: 271 Date: Summer, 1996 MALE
In 1970, I had an adrenal gland removed due to a tumor that was causing Cushing's. Before that, repeated visits to doctors resulted in a diagnosis of eating too much and ulcers. Finally, I collapsed due to a perforated ulcer. During surgery, the doctors noted abnormal fatty tissue, which led to a workup for Cushing's. While awaiting surgery for my adrenal tumor, I required more emergency surgery due to blood clots in my lungs. I am now on lifelong coumidan therapy. After about 6-12 months on replacement medication, my other adrenal did start functioning, but even 20 years later I still need to take cortisone acetate when under extreme physical or emotional stress. I have also developed aseptic necrosis, and am on very powerful pain medication. I work out at a gym, and lead a relatively normal life as long as I take the pain medication. Without it, I don't think I would be able to function. I would love to hear from others, as even after 20 years, I don't think I've gotten back to what I consider the old me.

Back to Top

Pituitary Tumor
Adrenal Tumor
Bilateral Adrenal Hyperplasia
Ectopic
Under 18 at Diagnosis
Male Members
Steroid Medications and Undiagnosed
Cyclic Cushing's
In Memory of...

Please remove my letter
I am a CSRF member and wish to submit a letter