A Desperate Effort: The Pitfalls and Frustration of a Woman's Quest For Competent Medical Care
By Martha Merino
I am a health professional; an Occupational Therapist. I have worked in the neo-natal intensive care unit of a major hospital and other acute care settings. My experience taught me the fallibility of doctors and the limitations of the health care system. As you will read, the training, knowledge and experience referenced above gave me the ability I would need, and temerity necessary, to doubt what I was told by doctors, listen to my own body; and, in the process, diagnose myself, and save my own life.
On five different occasions I was told by four different doctors that nothing was wrong. It was all in my head and just "STRESS". I felt like telling the doctor okay you are right, it is all in my head, so why don't you take a picture of my head and make sure everything is okay. Believe me, it would have saved me quite a few doctors bills, counseling visits and years of knowing something was not "quite right". It is amazing how easily we take for granted waking up with a healthy body.
During my illness - more for mental health than anything else - I kept a diary of events. It appears below. I hope and pray that others will learn from my experience and avoid the needless suffering endured by myself and countless others.
NOVEMBER 1, 1997
This has been the most frustrating experience of my life. This all began approximately six months ago when I got the chicken pox. I believe I had this problem prior to that but that the chicken pox drained my immune system and the problem became more evident. The first signs I noticed were tremors, anxiety, fever, insomnia, tachycardia and diarrhea. Over the six month period I went to see my general practitioner two times, Gynecologist once and Gastroenterologist two times. I was tested for hyperthyroidism twice, had countless blood tests and my stool cultured twice. Also, a colonoscopy to rule out Chrohns. Every test kept coming up negative. I was told numerous times that it was stress. I must admit that I was stressed and anxious, but it was primarily because I knew something was wrong with me and no one seemed to be able to find it.
Thank God, I have a Christian counselor who is a very good friend. I kept calling him thinking I was losing my mind, and he kept reassuring me that my symptoms were not all in my head and that I was having some very real physical symptoms. He did agree that some of the anxiety and restlessness might be feeding off the fact that I knew something was wrong.
There were a few nights that I confessed to my husband that I would rather die than go on feeling the way I was feeling. I felt so very misunderstood and no doctor really seemed to care. I began overanalyzing everything. I thought maybe I was not happy in my marriage and it was manifesting itself physically. Maybe I wasn't happy with my life or my job or anything. Maybe this was major depression.
My children were the best therapy ever. Whenever they were home they kept my mind off my physical problems and they kept me going. I knew every morning that life must go on and they kept me busy.
Six months later and sixteen pounds lighter the first real symptom appeared. I went to work and noticed I was really dizzy. I finished work and came home. The next morning I awakened with a severe headache; one like I have never experienced before. I got the kids dressed for school while lying on the floor. Somehow, God willing, I got them to school that day. I came home and crashed on the couch. I awakened two hours later with the sharpest pain imaginable behind my left eye. I got up and took two extra strength Excedrin and two aspirin. I laid back down and slept for about another two hours. When I awakened my headache was gone. I went about as usual for the next three to four days until I went to the bathroom and was taking my contacts out when I noticed my left pupil was larger than my right. The next day I went to see my optometrist who told me I should go see an ophthalmologist as soon as possible. I went to see an opthalmalogist who told me he was concerned that this could signify something neurological such as an aneurysm or tumor. However, he told me I might have rubbed something in my eye. He told me to call back in two days if my pupils were still uneven. Two days later my pupils continued to be uneven. When I called he told me I probably needed to go see my general practitioner. I was tired of being referred to this doctor and then back to that doctor, etc. I decided to call a neurologist at Diagnostic Clinic. I got an appointment that day. When I went to see the neurologist, he seemed very friendly and very concerned. I was so relieved because I finally felt that I had found someone who would help me get to the bottom of this. He decided to do a Magnetic Resonance Imaging ("MRI") test since I had such a severe headache. When doing the MRI he told my parents that my pituitary was glowing and that it looked as though something significant was going on with my pituitary. The next day he called and left a message claiming that there looked to be increased tissue or a hemorrhage and they felt that the following Monday I should have a Cerebral T ("CT") scan. After the CT scan he confirmed that I had bleeding in my pituitary. He called it pituitary apoplexy and he told me it was very rare and that they had only seen it once and the person had a tumor. He decided that hormone testing would be useful and they would call me back with the results. Two days later he called me back and told me all the hormone tests came back normal and they felt this was just a random bleed. Later, I would find out that the hormone testing came back "normal" because it was inadequate under the circumstances.
I was so very frustrated and upset. I really thought this doctor was different and that he cared and would help me get to the bottom of this. However, he was just one more doctor who didn't seem to want to take the time or care to take the time,or just did not have the time.
It was at this point that I decided it was time to take matters into my own hands. I went on the internet and began researching pituitary apoplexy. Everything that came up with pituitary apoplexy had to do with tumors. I then located the Pituitary Network Association ("PNA") on the internet. I found a doctor at MD Anderson affiliated with the PNA.
That night I was talking to my parents on the phone and told them there was a doctor at MD Anderson who I would like to see. My dad told me to call a friend of his who was the Chief Pharmacist there and explain to him my dilemma and see what he could do. I was quite apprehensive about phoning him but decided it was the right thing to do. I called and explained to him my dilemma and he said he would see what he could do. Two days later I had an appointment to see a neurosurgeon and endocrinologist that I had found on the internet. The neurosurgeon took the time to explain to me that the CT scan and MRI showed the pituitary enlarged and showed something in the pituitary. However, at this point they were unsure if there was a tumor or just blood. The neurosurgeon informed me it would take approximately six months before they could really tell me anything. In six months a followup MRI will be done to see if there is a tumor. The neurosurgeon still seemed concerned regarding the possibility of an aneurysm so he recommended a MRA to check out the vascularization of the brain.
The endocrinologist looked at the lab results that I had brought from Diagnostic Clinic and told me that my cortisol level was low. He went on to explain that the hormone testing that had been done previously was not adequate. He reassured me that cortisol can cause many different symptoms and might be responsible for my low grade fever and diarrhea. He had me come in a few days later for further hormone testing. Two days after the testing the endocrinologist called to let me know my cortisol levels were abnormal and I would need to begin taking steroids three times a day in order to increase and maintain my cortisol levels.
There are a few things that I want to mention at this point. I am really frustrated with the medical system and the lack of concern or empathy. I also feel there is such a bias against women. It is a male dominated field and I feel that many times if I had been a man complaining of these symptoms for so long something would have been done. However, I am not a man and I feel as though doctors just put me off as being a woman full of hormones and unable to get a grip.
I have news for you; this is my body. My spirit lives inside this body and I believe I can pinpoint when I am not feeling just right or normal or when something just doesn't seem right. In all fairness, when I went to Diagnostic Clinic I really felt that the neurologist cared and was concerned. This is a very rare condition and I feel he was in over his head. However, I don't understand why he didn't admit this and refer me to someone rather than just telling me it was a random bleed and sending me on my way.
I believe that my background in the medical field has helped me to continue searching and wanting to get to the bottom of this and not accepting some doctor's word as the "end all". If you ever doubt what a doctor tells you, continue to research and get a second opinion. I read somewhere that autopsies reveal that forty percent of people are misdiagnosed. If you are trusting someone with crucial aspects of your life, make sure it is someone you trust and you feel knows what they are doing. If you have any questions, seek a second, third, fourth and fifth opinion, if that is what it takes. I also want to mention that while researching about pituitary tumors I came to find out that 25% of Americans have pituitary tumors. However, most are non functioning tumors that never grow large enough to interfere with normal pituitary function. For the people with tumors that do interfere with function you must take a proactive stance, diagnose yourself and find a doctor through the Pituitary Network Association.
Pituitary tumors present in many different ways. I now know that adrenal insufficiency is very serious. If I would have accepted what the doctor said at Diagnostic Clinic I could have died. I look back and realize that when I was losing all that weight I was slowly deteriorating.
JUNE 29, 1998
I went back for a follow-up MRI and MRA on May twenty second. When I went to see the neurosurgeon the following Monday after the MRI and MRA he informed me there is no aneurysm. He also informed me that they believe I have a lipoma in my pituitary. He said that this is very rare. They thought it was blood in my pituitary because normally when contrast is injected a tumor will show up darker and blood will show up brighter. However, he informed me that if this was blood that in six months time the blood would have broken down and been reabsorbed. Therefore, he feels that what I have is a lipoma. The neurosurgeon said that it was not up to him to make the decision for surgery as that decision should be left up to the endocrinologist and the neuroopthalmologist since there is no point in fixing something if it is not broken.
I am now starting to have headaches on a daily basis. However, the medicine the doctor prescribed is not preferred for a mother of two as it tends to knock you out. The endocrinologist said this needs to be removed since it was causing headaches and is affecting my hormones. I am scheduled to have surgery on July the third. The endocrinologist informed me that with surgery the headaches should subside. Also, he informed me that he cannot guarantee that once the tumor is removed, the pituitary will start working again on its own. I hope that it will begin working on its own because I do not want to remain on medication for the rest of my life.
Since writing in October that I had lost so much weight I have gained about 30 pounds and weigh more than I ever have without being pregnant (because of the steroids). Looking back through what I have written I want to let you know the anxiety has gotten better since finding out what was wrong. However, at this point I don't feel like or act like the same person I was two years ago and I know I may never be that person again. I also realize I maybe on medication for the rest of my life. There are lots of people out there with primary and secondary adrenal insufficiency who take medicine their entire lifetime and function normally. I am willing to accept that if I must. However, I am willing to try this surgery and hope that my pituitary will begin to function normally.
Most of all, what I want people to get out of everything that I have written is that if you know something is wrong, you don't feel "quite right" and you seek counseling and sound advice from someone you trust, that it is NOT psychological. BE PERSISTENT. I am telling you when I look back now, I was depressed, anxious and thought I was having a nervous breakdown because doctor after doctor kept telling me nothing was wrong; it was just stress; it was all in my head. Well, literally and figuratively it was all in my head.
It has been a week now since I had brain surgery and it was not nearly as bad as I expected. However, let me remind you my doctor at MD Anderson is one of the best and there were many prayers going up that day. Today I went for a follow up and found out that the pathology reports revealed I had a Rathkes Cleft Cyst which is congenital. Meaning I have had this cyst since I was born. Over the years it has grown to such a size as to compress the pituitary and compromise the pituitary's ability to function normally.Therefore, that is why I am taking steroids and synthyroid. The neurosurgeon told me in six weeks time I will return for a followup MRI and will continue to have these every year for the next five years and then be released. The endocrinologist informed me that in six weeks they will perform an ACTH stimulation test to check and see if the pituitary is beginning to function normally and see if I can come off the medicine. However, from here on out it will be a waiting game to see if there is permanent damage of the pituitary or if the cyst had been compromising the function of the pituitary.
I have always thought that the medical system was good. However, I have learned that you are your own patient advocate.You must take care of yourself. If you have some rare disorder you must take action. No one is going to do it for you. You must research, learn and arm yourself with knowledge of your symptoms, your disorder and who the specialists are. I cannot say enough about finding a specialist. Believe me, there is a reason that they are called specialists. I pray that anyone reading this who is fighting a medical battle will be persistent and get to the bottom of it. Don't give up hope, and most of all, keep the faith.
I also just want to let you know I haven't worked for about the last six months. I did not have the energy or the drive. This experience was draining. I thank the Father above that my family has survived without my paycheck. I plan on returning to work back in the medical field real soon and let me tell you, I will have a new respect and empathy for those who are sick and suffering.
At the end of this, I would just like to say, remember you are your best patient advocate; arm yourself with knowledge and find the best.
I would like to leave you with a poem from the Pituitary Patient Resource Guide that was written by Roy Campanella.
"A Creed For Those Who Have Suffered."
I asked God for strength, that I might achieve.
I was made weak, that I might learn humbly to obey.... I asked for health, that I might do great things.
I was given infirmity, that I might do better things..... I asked for riches, that I might be happy.
I was given poverty, that I might be wise.... I asked for power, that I might have the praise of men.
I was given weakness, that I might feel the need of God.... I asked for all things, that I might enjoy life.
I was given life, that I might enjoy all things.... I got nothing I asked for - but everything I had hoped for.
Almost despite myself, my unspoken prayers were answered. I am, among men most richly blessed.