Message: 8 Date: Mon, 21 Aug 2000 21:18:24 -0600  

Because I Believed

My marriage of nine years did not survive the diagnosis. There were no support groups to help me understand my ever changing feelings. In my heart I believed I was only half a woman. When I looked in the mirror, I could only see the image of the woman I used to be. 

As time passed I married again. Yet, the niggling thought of being less than whole still bothered my mind. Breast prostheses were not comfortable. In the summer they collected sweat and in the winter they were ice cubes hanging inside my clothes. They seldom stayed in place and were apt to fall out when in a bending position. 

In 1980 women were having breast reconstruction following breast cancer with the promise that the implants would never have to be replaced..."good for a life time"...we were told. They appeared to be the perfect answer to a person seeking to be whole again. 

Since my breast surgery in 1975 was a radical, it was necessary to first undergo a latismus dorsi flap. This required surgically removing part of a muscle from my back just at the bottom of my ribcage, pulling it through under the arm, and attaching it to the chest wall. A flap of skin from the same area was grafted to form the new breast on the chest cavity. During the surgery the right breast underwent a subcutaneous mastectomy. This surgery once again left me temporarily paralyzed on the left side. The diagnosis of the breast tissue of the right breast was fibrocystic disease, considered to be pre-cancerous for me. 

Following a two months recovery from the first surgery, Heyer Shulte implants were placed in my body on January 14, 1981. Two months later I noticed a soft fleshy bulge in the lower right abdominal area. At the same time, my right breast seemed remarkably smaller than it had been. The abdominal mass was diagnosed by one physician as an ingianal hernia. A second opinion said I did not have a hernia and not to allow another operation. My plastic surgeon did not question whether there was a connection between the smaller implant and the soft mass. The medical records from his office do not indicate I had ever discussed this with him. However, a new Heyer Schulte implant was placed in my body on April 20, 1981. Surgery notes indicate only a need for a larger implant. Further reconstructive work was done on the same day to recreate a nipple on the new left breast by dividing the nipple from the right breast in half. 

Excess skin tissue under my left arm became irritated as my arm rubbed against the flesh. On January 12, 1982, in an attempt to solve this problem in the office surgery, I lost consciousness and was sent to a neurologist. He noticed a faint mid systolic click which had been undetected prior to that time. An EEG came back with a report of "mildly abnormal". I was told "not to worry". 

As the months passed I noticed a marked increase in weight. I grew tired easier but I believed it was caused by too many surgeries in too short of a time. I had no explanation for the weakness in the lower extremities. 

By the fall of 1982, I again noticed the right breast was slowly getting smaller. On Oct. 5, 1982, I had the implant replaced with a Heyer Shulte implant. The surgical notes indicate "spontaneously deflated Rt implant". 

That winter was marked with bronchitis and difficulty breathing. Since the winter of 1982-83, I have been plagued with a chronic cough, shortness of breath, fatigue, and bronchitis. 

In 1984 I began seeing orthopedic doctors and a neurologist for lower back pains and intermittent pain in the left thigh. In 1985, a neurologist treated me with elavil. Within days, I became a part time screaming lunatic alternated with periods of stupor. To counteract the side effects of the elavil, I was placed on prolixin. Then entered hallucinations. I seemed to be split into two persons...and one of them recognized my behavior as abnormal. Without permission from the physician, I flushed the medications. I was determined that no one was going to diagnose me with mental disorders. It was months before my body recovered from the side effects of those two medications. 

On May 23, 1986, I had a small bump on my right cheek. It was removed and the lab report listed it as benign. There was no check for the possibility of floating silicone. 

June 19, 1987, came as any other summer day...bright and beautiful. However, when I sat up in bed, I experienced extreme pain in my right chest and arm. It felt as if millions of tiny needles were pricking my body. I screamed frantically and pulled at my hair. 

My husband took me to the emergency room. I told them I thought one of the implants had broken. Again I was reassured they "could not break open". I was diagnosed with shingles although no irritation to the outer skin was apparent. With a prescription of cortizone I was sent home. My husband gave me two of his tylenol with codeine. When I awakened hours later, the pain was gone and the breast was flat. 

No one warned me to get the implants replaced or removed immediately. I was not told of any possible danger to my system. I really did not want to have another surgery. I went to the department store, purchased rubberized falsies, and proceeded to pad my bras. However, that worked as an insulation and what was left of the implants would heat up. I threw away the falsies and scheduled another visit to the doctor. 

Meanwhile, I was complaining of fatigue. Some days I just couldn't seem to function. I began to notice numbness in my hands. My legs at times seemed to be unattached to my body and I began to fall. When I asked doctors about the implants, they were unconcerned. 

On August 31, 1988, the Heyer Schulte implants were replaced with the Becker Expander. The doctor said he had been dissatisfied with the products he had been using and the Becker Expander was a better implant. The surgical notes read "deflation of bilateral implants". 

By 1990 my dentist was reporting bleeding gums and suggested surgery to correct the problem. I did not seek surgery on my gums Yet, in spite of frequent brushing and visits to the dentist, I still experience sensitivity and bleeding gums. 

The Becker Expanders soon caused my chest to itch. My face began to get ugly red splotchies. The fatigue grew. I noticed periods of cold flushes on the left side of my face and down my left arm. The upper thighs would become numb. If I stood in the sun for any length of time, I felt as if I had a boiling kettle in my chest. The most embarrassing and humiliating problem was the beginning of spontaneous bowel release. As a member of the local city council, I greatly feared what might happen in prolonged meetings. I came to meetings early in order to climb the stairs slowly and unobserved. Walking up stairs caused my legs to hurt and made me short of breath. 

In 1991 I went to the University of Utah for the constant loud ringing in my ears. They found no cause. During the spring of 1992 I noticed my implants did not appear to fill out the breast cavity. The news media reports of health related problems got my attention. I asked my doctor about the reports. He told me it was "hysteria" brought on by a few people. He said I needed to have the implants replaced and he scheduled another surgery and ordered the implants. 

When it came time for the surgery, I had pneumonia and had been hospitalized for a few days. Recovery was slow. I began to read what was available locally about the dangers of the implants. I knew I just could not continue facing more surgeries and "newer and improved" implants. 

I began to experience difficulty swallowing in Feb. 1994. At times, I almost choked until I nearly passed out. My skin was dry. I always had something to drink in my hands. And the extreme itch persisted. 

By the fall of 1994, I began to notice my vision was going. My eyes felt sticky. I could no longer read small print and it exhausted me to read. Anything printed on colored paper was a mystery. Today I wear bifocals. 

I have little grip in my left hand. Sometimes I feel I must mentally "tell" my hand to grasp a firmer hold on things. Sometimes I have dropped and broken things without the feeling of letting go. There are days when I do not feel like going anywhere. There are days when I do not feel like getting dressed. There are days when I only want to sleep. There are days when my body fights to breathe. Yet no doctor, in spite of thousands of dollars in tests and office calls, has been able to diagnose any other cause for the myriad of symptoms I experience. 

On July 26, 1995 the implants were removed at the University of Utah. I requested the capsules be removed and tested for silicone. While they were removed, the surgeon did not believe it was necessary to test for silicone or to even pass the request to the pathology lab. 

During the latter part of January 1996, I noticed some hard bumps appearing on my face. These were different from the red rash I had already experienced. Due to other family health issues, I put off seeing the doctor. However, when the dermatologist looked at my face on March 12, 1996, the first question he asked was, "Has anyone ever diagnosed you with lupus?". When I told him "no", he said I exhibit all the signs of lupus. Now it is on to more tests and the anticipation of the results. Even after my husband's employer authorized payment of the testing, it was almost another month before Blue Cross sent the authorization. 

When authorization finally came for the blood tests, the doctor would only approve the test for lupus. He did not believe the remaining tests were necessary. Desperate, I sent a message to a doctor in another specialty and he authorized the blood work to be done. 

Agonizing days passed as I waited for the tests to return. When they arrived, the tests showed high levels of silicone in some bands and a positive ANA. (There was also a notation to watch for multiple myeloma.) Perhaps now the answer to my health crisis was there---lupus. I arranged for an appointment with a rheumatologist in June. She would only say I was a "lupus suspect" because other blood work did not show I was anemic. No treatment or futher testing was offered. 

Meanwhile on the left side of my chest, I was growing a new breast. That was the site of the Halsted radical mastectomy and the latissimus dorsi flap. I had not had swelling on that side in eighteen years. 

The reports from the breast tissue came in at last with a notation to give my file to a good attorney for review. It is time to wait again. 

The neurologist in Salt Lake said the problems with my left arm are caused by the latissimus dorsi muscle attaching itself to the ulnar nerve or medial chord under the arm. The plastic surgeon sent a message that there is nothing more to be done. 

When I decided to go through breast reconstruction, I never had any idea of the repeated surgeries I would be facing. I was never informed of the lack of reliability in the quality of the implants. One of the main reasons I had for reconstruction was because my surgeon had told me I would be facing breast biopsies in my remaining breast at least every five years. I had already had two. 

My recurring breathing problems have now been diagnosed as dysfunctional vocal chords, damaged by unknown cause. Not asthma. Not bronchitis. And certainly not depression! 

Today I look in the mirror and I see the remnants of the failed breast reconstruction. Never again will I whole heartedly trust the word of a doctor with another gimmick to sell or another option of surgery to reconstruct. Until the plastic surgeons are willing to put the implants in their own families, until they move muscle from their own backs, hips, or abdomen, they should not tell another patient that there are "no long lasting problems" with such surgeries. I have lived to tell the other side of the tale. 

As I watch the recent breast cancer victims frantic in their fear of being less than whole, seek the plastic surgery "fix", I realize one cannot educate a person consumed by fear. There is none so blind as one who refuses to see and none so ignorant as one who refuses to listen and learn. 

Since May 21, 1975, when I awakened in a hospital room with the knowledge that I was a victim of breast cancer at 27, I have come full circle. And this too I shall survive. 

Copyright 1995/96 by Pamela Dowd. Permission is granted to reproduce this document in whole or in part for non-commercial purposes provided this copyright statement is included.