My story is a little different than those I have read so far. I wanted to write about what happened to me. I found out about Cushing’s syndrome in 2008 but had aphasia (lack of ability to speak or understand language following a brain injury), dyslexia and very limited communications ability. Currently I write well enough with some editing to share my story.
In 2004 while getting my Master Degree in Art Education I had started gaining weight and saw my blood pressure increase gradually. After 5 children I had been able to maintain my height and weight (5’ 6” at 150lbs) simply by watching what I ate after each child (all 6 years apart except the last 2). I began to notice difficulty laying on my right side (hip pain) when I tried to sleep. My MD tried several different blood pressure medications. Each would work for a short time, and then my blood pressure would gradually increase. I knew something was wrong and the nurse documented this in my records. I was more concerned with the blood pressure spikes that would sporadically increase to dangerous levels.
My regular doctor sent me to have an MRI for my hip pain. That only showed a small tumor in my left adrenal gland. For some reason the doctors did not connect my strange weight gain or high blood pressure with the tumor. My doctor checked my adrenal gland every six months with a CAT scan and the radiologist repeatedly said it was too small to worry about it and did not send me to an endocrinologist. My MD did send me to a surgeon knowing my dad had adrenal gland cancer but the surgeon was not concerned because of the size of the tumor – 1.2-1.5 cm at that time.
By the next 6 months I had continued going to the gym and keeping within 1000 to 1500 calories’ a day as I had since I was 17 years old. Even though I was a high school teacher I went to the gym after my last 2 middle school girls went to sleep but continued to gain weight. My regular doctor continued to change my high blood pressure medication and sent me to a surgeon because my next CAT scan (on 1/22/07) diagnostic image report said there was enlargement and my adrenal tumor was now 1.8 cm. That doctor had my records…knew the edema, uncontrollable high blood pressure, that I was losing my hair and already over 200 lbs. On my medical records are notations I had told both doctors 1/22/07…”something is wrong”. The nurse at my school took my blood pressure and it was “spiking” higher…often. My doctor continued to change my medication and suggested that because I had lost my mother with cancer in Oct 2006…and since I was almost 50 that I needed to work out harder and eat less!!! Did he think I was going to McDonalds’ every day?
My husband had told me every time I became frustrated…”He is a good doctor and I will love you still even if you gained weight!!!” That made me so upset because there is no way one can work out like I did and starve myself and continue to gain weight. My feet started swelling and I continued to see my doctor every 3 weeks to change my medications and find a new diet. I hated my appearance and no longer looked like myself.
Students and teachers would be out for Spring Break in Myrtle Beach, SC and I wanted to fly to see my dad. He was dying of adrenal gland cancer that was “rare” and I did not believe he would live to the summer in Tennessee and I wanted to see him again. (“I realize now that my dad had been sent to 2 different hospitals in a year and in October 2011 that he had not seen an endocrinologist…No wonder they could not control his sugar and high blood pressure…he had 4 years with both adrenal glands removed and no endocrinologist!!! He eventually moved to Fort Myers to get more care but still was never referred to an endocrinologist. I waited too long to ask; after my father’s death I researched his records and he never had.)
On my last appointment to see my doctor he had explained that if my dad had adrenal gland cancer…how can we be sure I don’t have cancer too? I complained about my blood pressure again, although at the office that day it was normal. At school the nurse had found it to be 200/100 and I was having headaches (according to my records.) Once again, with documented complaints of 10 of the 12 Cushing’s symptoms … no referral to an endocrinologist. I trusted the doctor and thought he knew what he was doing.
After my visit with my dad I flew back with a rare headache that would not go away. I felt that it was difficult to focus on the rental car and the flight back to Myrtle Beach. I had 2 days left before my 10 and 11 year old girls went back to elementary school and my 16 year old girl went back to the high school. My husband said he told me to go to bed, get some rest because I was disoriented. He called my doctors’ office 3 times during the day, explaining that I couldn’t concentrate on anything, although my blood pressure seemed normal. The doctor told him it might be a reaction to an increase in blood pressure medication. About 3 hours later on April 5th, 2007 my husband called an ambulance.
Grand Strand Hospital sent me to MUSC (Medical University of South Carolina) by helicopter because I had a ‘bleed” in my left brain. By that time I was unconscious. I stayed in a coma for 18 days and was eventually diagnosed with a ruptured aneurysm and hemorrhagic stroke. They told my family several times, during this time, that there was too much brain damage and that I was paralyzed on the right side of my body. Later when I survived they told my family I would be a vegetable and would not be able to recognize my family. I was there almost a month and then transferred to a rehab center for physical and speech therapy. During the next year I continued to have the same endocrine problems, including fluctuating high blood pressure, but was largely unaware that even though they saved my life no doctors had suggested that I had endocrine problems. I know now that I needed a referral to an endocrinologist, but at the time I barely recognized my children’s names or could ask “what happened to me and what is wrong?” My husband had to talk to my doctors and do everything else for me. I could not read and it was a slow process to get better but I was determined to find out why I couldn’t teach anymore and forgot so much. The word “stroke” was not in my vocabulary…I was still trying to answer the questions from my speech therapist…”Where is your nose… (I knew I had one but did not know where it was.)
I was taking many different kinds of medication and my oldest son had put sticky notes on everything…table, chair, cup, etc. He made a notebook and cut out pictures of apples, dog, and tomato with the words so I could learn the names of common things. I studied over and over and it was a slow process. A year later I told my husband to try and understand as I continued to gain weight, partly because even though I was no longer paralyzed I still had aphasia. Trying to communicate with my doctor and husband were frustrating. I could not remember why I was miserable but heard my husband tell my doctor to get another doctor. I was then referred to a kidney doctor to try and control my high blood pressure…that wasted about 6 more weeks. He had my records and knew…”Something is wrong.” As I looked at my records the doctor had written…”She had 5 children and that is probably the reason she could not control her weight!!!” He never saw me after my 5 children and the youngest was 9 years old before I gained weight. We have seven endocrinologists in my city!!! Soon after that I got another CAT scan and it was determined my adrenal tumor had grown larger. It went from 1.8cm to 2.5cm in size.
The kidney doctor then referred me to an urologist. The urologist took one look at me in my first appointment and said “I think you have Cushing’s syndrome.”
My husband had told that doctor that my doctor had checked the cortisol and it was “normal”. That doctor said he would use a 3 day urine and a dexamethasone suppression test the day after. I do not remember June 24th, 2008 except he that told me I would lose weight! That doctor removed my adrenal gland…saw me several times and never saw him again until June 2011. The cortisol was 201 according to my record and he had confirmed Cushing’s but did not send me to an endocrinologist. After the surgery I went home with a mix of medications and found myself a day later back in the hospital with a blood pressure of 90/50. The doctor stopped my high blood pressure medicine because I no longer needed it. If the adrenal gland had been removed in 2004…I believe I would not have had the years of medication and a stroke. I no longer need high blood pressure medicine and I have lost the hump on my back, edema, and 50 pounds!!! Had I died after my stroke, my family was told by record that it was birth control or a blood clotting problem. I believe I survived to tell the truth. I hope this never happens to anyone else. I do not hesitate to give this flyer to send to people that have the major symptoms of Cushing. I still have aphasia and just tell them that “I wish someone would have given me this information before 2007.” I do not explain what happened to me.
As I mentioned above, I slowly got better after the surgery and the Cushing’s syndrome side effects dissipated one at a time. I was able to reduce my daily medication to two medicines, one of them a blood thinner that I must take my entire life as a result of the stroke. As I began to look more like myself and continued to recover my reading and speech I began to want more answers. I made an appointment with the urologist, the doctor that diagnosed me with Cushing’s (15 minutes into our first meeting). I asked him specifically why he hadn’t referred me to an endocrinologist and he answered that his surgery had taken care of the problem. I asked the urologist why it had taken so long and so many doctors for me to be diagnosed with Cushing’s syndrome, and he replied that the previous doctors before him had not used the right cortisol test. They had checked for the presence and level of cortisol, while he had used a suppression test.
I told my husband after my appointment that my doctor confirmed what I had been reading and I needed get a referral to see an endo from my gynecologist and change my MD care. At that point after reading, I could have gotten better care with a Veterinarian because there is more information about dogs with Cushing’s than humans. Most of the time, when people I meet have heard about Cushing’s syndrome, they have known of a dog that had it. I believe that Cushing’s is far more widespread than previously reported.
In Jan 2012 I had my records and saw my endocrinologist so he could continue to treat and prevent the misdiagnosis and in the chance that I could have had another stroke. I have to say I was very disappointed and feel like all of this could have been avoided, including the aneurysm and stroke when I was 48 years old. If I had seen an endocrinologist as soon as my adrenal gland and endocrine symptoms were found and I could have been treated then. I have to say I am bitter that I did not research more than I did. I lost 30% of my left brain and the doctors told us after the injury that in all likelihood I would never get better after the first 6 months of my recovery; the permanent damage to my “optic” nerve would not improve. It was compensated by my determination to find out and study what happened to me.
I do not paint portraits like I used to or remember the art history that I taught but I am a stroke and Cushing’s survivor and study every day. My husband and family are helping me to finish a book about my experiences and recovery. I hope to get better to the point to teach Art Therapy to stroke survivors and become an advocate for stroke dyslexia (as a result of my stroke). I want to continue to expand our Local Support Group in Myrtle Beach South Carolina.
I have thoroughly enjoyed the “Patient Stories” and hope I can write as well as those stories that I have been reading.
Newsletter: Spring, 2013
State: South Carolina