A Desperate Effort: The Pitfallsand 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 seemy 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 beable 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 thefact 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 forabout 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 myoptometrist who told me I should go see an ophthalmologist as soonas 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 neurologistat Diagnostic Clinic. I got an appointment that day. When I wentto 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 beincreased 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 backwith 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 arandom 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 timeto 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 neurosurgeonstill 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 hadbrought from Diagnostic Clinic and told me that my cortisol levelwas low. He went on to explain that the hormone testing that hadbeen done previously was not adequate. He reassured me thatcortisol can cause many different symptoms and might beresponsible for my low grade fever and diarrhea. He had me come ina few days later for further hormone testing. Two days after thetesting the endocrinologist called to let me know my cortisollevels were abnormal and I would need to begin taking steroidsthree times a day in order to increase and maintain my cortisollevels.

There are a few things that I want to mention at this point. Iam really frustrated with the medical system and the lack ofconcern or empathy. I also feel there is such a bias againstwomen. It is a male dominated field and I feel that many times ifI had been a man complaining of these symptoms for so longsomething would have been done. However, I am not a man and I feelas though doctors just put me off as being a woman full ofhormones and unable to get a grip.

I have news for you; this is my body.  My spirit livesinside this body and I believe I can pinpoint when I am notfeeling just right or normal or when something just doesn’t seemright. In all fairness, when I went to Diagnostic Clinic I reallyfelt that the neurologist cared and was concerned. This is a veryrare condition and I feel he was in over his head. However, Idon’t understand why he didn’t admit this and refer me tosomeone rather than just telling me it was a random bleed andsending me on my way.

I believe that my background in the medical field has helped meto continue searching and wanting to get to the bottom of this andnot accepting some doctors word as the “end all”. If you everdoubt what a doctor tells you, continue to research and get asecond opinion. I read somewhere that autopsies reveal that fortypercent of people are misdiagnosed. If you are trusting someonewith crucial aspects of your life, make sure it is someone youtrust and you feel knows what they are doing. If you have anyquestions, seek a second, third, fourth and fifth opinion, if thatis what it takes. I also want to mention that while researchingabout pituitary tumors I came to find out that 25% of Americanshave pituitary tumors. However, most are non functioning tumorsthat never grow large enough to interfere with normal pituitaryfunction. For the people with tumors that do interfere withfunction you must take a proactive stance, diagnose yourself andfind a doctor through the Pituitary Network Association.

Pituitary tumors present in many different ways.  I nowknow that adrenal insufficiency is very serious. If I would haveaccepted what the doctor said at Diagnostic Clinic I could havedied. I look back and realize that when I was losing all thatweight 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 theMRI and MRA he informed me there is no aneurysm. He also informedme that they believe I have a lipoma in my pituitary. He said thatthis is very rare. They thought it was blood in my pituitarybecause normally when contrast is injected a tumor will show updarker and blood will show up brighter. However, he informed methat if this was blood that in six months time the blood wouldhave broken down and been reabsorbed. Therefore, he feels thatwhat I have is a lipoma. The neurosurgeon said that it was not upto him to make the decision for surgery as that decision should beleft up to the endocrinologist and the neuroopthalmologist sincethere 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 motherof two as it tends to knock you out. The endocrinologist said thisneeds to be removed since it was causing headaches and isaffecting my hormones. I am scheduled to have surgery on July thethird. The endocrinologist informed me that with surgery theheadaches should subside. Also, he informed me that he cannotguarantee that once the tumor is removed the pituitary will startworking again on its own. I hope that it will begin working on itsown because I do not want to remain on medication for the rest ofmy life.

Since writing in October that I had lost so much weight I havegained about 30 pounds and weigh more than I ever have withoutbeing pregnant (because of the steroids). Looking back throughwhat I have written I want to let you know the anxiety has gottenbetter since finding out what was wrong. However, at this point Idon’t feel like or act like the same person I was two years agoand 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 peopleout there with primary and secondary adrenal insufficiency whotake medicine their entire lifetime and function normally. I amwilling to accept that if I must. However, I am willing to trythis surgery and hope that my pituitary will begin to functionnormally.

Most of all, what I want people to get out of everything that Ihave written is that if you know something is wrong, you don’tfeel “quite right” and you seek counseling and sound advicefrom someone you trust, that it is NOT psychological. BEPERSISTENT. I am telling you when I look back now, I wasdepressed, anxious and thought I was having a nervous breakdownbecause doctor after doctor kept telling me nothing was wrong; itwas just stress; it was all in my head. Well, literally andfiguratively it was all in my head.

JULY, 1998

It has been a week now since I had brain surgery and it was notnearly as bad as I expected. However, let me remind you my doctorat MD Anderson is one of the best and there were many prayersgoing up that day. Today I went for a follow up and found out thatthe pathology reports revealed I had a Rathkes Cleft Cyst which iscongenital. Meaning I have had this cyst since I was born. Overthe years it has grown to such a size as to compress the pituitaryand compromise the pituitary's ability to function normally.Therefore, that is why I am taking steroids and synthyroid. Theneurosurgeon told me in six weeks time I will return for a followup MRI and will continue to have these every year for the nextfive years and then be released. The endocrinologist informed methat in six weeks they will perform an ACTH stimulation test tocheck and see if the pituitary it beginning to function normallyand see if I can come off the medicine. However, from here on outit will be a waiting game to see if there is permanent damage ofthe pituitary or if the cyst had been compromising the function ofthe 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 youmust take action. No one is going to do it for you. You mustresearch, learn and arm yourself with knowledge of your symptoms,your disorder and who the specialists are. I cannot say enoughabout finding a specialist.  Believe me, there is a reasonthat they are called specialists. I pray that anyone reading thiswho is fighting a medical battle will be persistent and get to thebottom of it. Don’t give up hope, and most of all, keep thefaith.

I also just want to let you know I haven’t worked for aboutthe last six months. I did not have the energy or the drive. Thisexperience was draining. I thank the Father above that my familyhas survived without my paycheck. I plan on returning to work in back the medical field real soon and let me tell you I will have anew respect and empathy for those who are sick and suffering.

At the end of this I would just like to say remember you areyour best patient advocate; arm yourself with knowledge and findthe best.

I would like to leave you with a poem from the PituitaryPatients 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.... Iasked for health, that I might do great things.

I was given infirmity, that I might do better things..... Iasked for riches, that I might be happy.

I was given poverty, that I might be wise.... I asked forpower, 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 gotnothing I asked for - but everything I had hoped for.

Almost despite myself, my unspoken prayers were answered. Iam, among men most richly blessed.