Well, anxiety was well on its way because now I was scared by my symptoms. As the symptoms persisted and worsened, I began having difficulty maintaining my job and carrying on everyday life. I also consulted several times with an internal medicine doctor and was hospitalized twice. It wasn't until my husband and I moved to New Hampshire in l988 that a neurologist there finally decided to look at my brain using the MRI, magnetic resonance imaging machine. It was May l988 when they discovered what they called a lesion on the right temporal lobe of my brain. It took three years for a physician to decide to look at my brain!

They were all questioning me as to what I thought the problem was. I was then diagnosed with Multiple Sclerosis. Based on my own medical training and research, I did not believe the diagnosis, and I sought another opinion. In fact, I sought several other opinions: from endocrinologists, and eye and ear specialists. I was referred to a Boston-based hospital in l988 and was told I had a lesion on my brain but did not have MS. However, the doctors did not know what was causing my symptoms or what the lesion was. Meanwhile, the headaches worsened. Vomiting, visual disturbances, vertigo, weakness and faintness continued, along with memory loss. I was offered a brain biopsy even though they had no idea what the lesion was. This was absurd to me. I hated the idea of someone entering my brain, my most vital organ, my inner self. One of the simple explanations for the lesion was scar tissue from an old childhood injury. No one was going to enter my brain with that simplistic diagnosis.

I was then referred to another neurosurgeon and neurologist at another Boston-based hospital where I was told that the lesion on my brain was not causing my symptoms. I was given Xanax, an anti- anxiety agent, and again diagnosed with anxiety.

They were not listening to my symptoms and were not answering the very intricate questions I asked them. So what was this in my brain?? I found it hard to believe that a lesion on my brain wouldn't cause symptoms -- after all, it shouldn't be there! I continued to do research myself, but I could not read very well because of visual disturbances and memory loss.

I finally agreed to a psychiatric evaluation in l990 to see if I really was crazy. What really was happening was that I was being intimidated into thinking I was insane. I believe this was because of their negligence and bias that most women suffer from hysteria. I tried Prozac, Imiprimine and other anti-anxiety drugs to no avail. I eventually threw them down the toilet. Everyone wanted to medicate me, not listen to me or search further. I certainly was a compliant patient. I was willing to try anything to get well again. I was a healthy, hard-working nurse before this nightmare began.

Many of the doctors were taken aback by all my medical questions and comments I had, but this was my body and my life! Finally in l991, now six years after the symptoms arose, I met a wonderful psychiatrist in Rhode Island and a super female internal medicine doctor at the second Boston-based hospital. Both of them believed that the lesion in my brain was causing the symptoms and possibly causing seizures. Still, the neurology group at the Boston hospital said the lesion was an unknown entity to them. Meanwhile, I tried to work and continue on for an advanced degree in nursing, fighting the symptoms but knowing I was getting sicker. The female physician I mentioned tried in vain to convince the neurology doctors, her colleagues, that this may be a tumor and the cause of my symptoms.

Since l985 I had been examined by seventeen doctors, mostly specialists, and had fifteen MRI scans. The list of my diagnoses were: obesity, depression, anxiety, Multiple Sclerosis, PVC's.(irregular heartbeat), hypothyroidism, chronic fatigue syndrome, dizziness due to obesity (my personal favorite!) and lupus. No one mentioned brain tumor, yet the symptoms were so apparent. I finally had to leave school and my part-time nursing job because I could no longer function. Once again, I sought out more opinions -- this time in Rhode Island.

I knew I was not crazy because I passed the psychiatric evaluation, but I knew I was terribly sick. Thankfully, I found an oncologist and neurosurgeon who took one look at my MRI and knew I had a brain tumor. I was diagnosed in February l993, eight years after my search for wellness began. I can't begin to express the relief I felt knowing I was finally diagnosed and I was not crazy! They believed me! I was to have the tumor removed in June l993 when I learned I was pregnant. I carried my daughter with this tumor inside my brain. Because of the tumor, I delivered her by Cesarean section in December of l993.

Eight and a half weeks later I underwent a craniotomy for removal of an astrocytoma. It had grown to two and a half times the size it was when it was discovered in l988 and identified as a lesion. Unfortunately, because of the size of the tumor the surgery required removal of my anterior temporal lobe, leaving me disabled. I have memory loss, dyslexia, confusion, weakness, vertigo, nausea, faintness, loss of peripheral vision, other visual disturbances and depression. I am unable to care for my baby daughter or myself properly without help. Had the doctors really listened to me as a patient and a person, I may have been diagnosed sooner -- before nine years of hell had passed and before my brain had to be entered. In addition my medical expenses and loss of income totaled $180,000. I have lost friends over the years because I was too sick to attend social events and some family members didn't believe that I was really all that ill.

During my ten-year ordeal, I have met dozens of patients from all over the country with similar heart-wrenching stories. A large majority of them, I would say 80 percent or so, were women. When I was a nurse in training I observed that the many physicians would treat the female patients differently. As a professional nurse, I watched these same scenarios continue. I wish that the medical field would stop treating complaints from female patients as psychological in nature. There are an abundance of cases where doctors are too quick to diagnose women as suffering from anxiety and simply medicate them.

Finally, media reports and medical journals substantiate the theory that female patients are not treated equally. I hope that other women can learn from my story that even with all the medical knowledge I had access to, it wasn't enough. Women must be vigilant in taking charge of their medical care. I would advise other women to ask their doctors all the questions they want, go by their instincts, and if it doesn't feel right, they should seek other advice. In addition, women should talk to the nurses in their doctors' offices, call the physician referral numbers in the phone book and not stop until an answer is found - - no matter how many opinions must be sought.

If I can help any patients who question their health care treatment, please contact me. As part of my rehabilitation, which I had to pursue on my own, I am trying to inform the public and help other women avoid painful misdiagnoses. Our lifetime is so short, please don't lose years from it as I did. My daughter is nineteen- months old, and I have been very ill for her entire life. This is time I can never replace. Perseverance and women's intuition does win out in the long run. I advise patients to follow their instincts. Remember that doctors are human, too, and they make mistakes. Make sure that your thoughts and questions are heard; you have only one body. With the help, understanding and compassion of my new neurologist, my internal medicine physician and my endocrinologist, I am hopefully on the road to recovery. There are physicians who are great and can make all the difference in the world. Never give up the search!

Kathleen B. MCCarthy RN; rare dysembryoplastic tumor 3/94 (Rhode Island Women's Health Collective Article)

Copyright © 1999 by kathleen McCarthy All rights rserved.