Date: Thu, 7 Sep 2000 22:50:35 EDT

Hello, my name is Shar, I had a mastectomy and reconstruction with a silicone breast implant in 1980. I did not want the implant after the surgery, but my doctors reassured me that the implant was safe, would not rupture, and would be the best thing for my physical and mental recovery. My fear was so great regarding a rupture, that the doctor and I preformed sit and squash and pull and tug tests on an implant to " prove" to me that the implant would not rupture. I wasn't exactly convinced at that point, but was overwhelmed by family and medical team pressure to agree to allow the implant into my body. I was 23 yrs old at that time. Within six months after the surgery, I began to experience severe shooting pains, rashes and shoulder pain. I felt fatigue and started to develop allergies. I discussed my concerns with my drs, they were concerned as well, and performed two exploratory surgeries to check on the status of my implant. The drs were unable to find a source for the problems I was having, so I learned to live with the shooting pains, the shoulder and chest aches and limited movement, rashes ,fatigue and allergies. 

I insisted that the implant, the root of my medical problems be returned to me after removal. My drs agreed. Although my implant did not rupture, I was surprized to see how small it was. It was very aparent to me that somehow it had leaked. The implant appeared to be a full cup size smaller. Within a few months after removal, I began to feel better. It seemed my health problems were getting better, I returned to work and had a few relatively good health yrs, I still had unusual aches and pains, arthritis, allergies and fatigue, but somehow I managed to maintain a flexible work schedule to get through the health flare ups. Slowly the chronic problems developed and one after another began to overwhelm my body and spirit, with each bout being of longer duration and severity. Within the passage of 7 yrs, my health had deteriorated to the point where I was forced to medically retire. My drs did many tests and found silicone in my system and suspected a link to my former implant. I have been fortunate that the majority of the drs that I consulted had an open mind and the awareness to research any and all of my illnesses and possible causative agents. 

By the year 2000 I had developed severe chronic fatigue, arthritis, severe cognitive and memory problems, severe allergies, sleep apnea, neuropathy in my hands and feet, unusual rashes and bumps on my hands and feet, hair loss, severe asthma, depression, dry eyes and mouth, connective tissue disease, raynaud's and severe chronic pain, trigger thumbs, fibromyalgia, meniere's, stomach problems and numerous cysts. I was and am overwhlemed with my continuing loss of vitality and numerous medical issues.  

Getting through each day and any activity almost seems beyond the struggle. Just as I felt it really couldn't get any worse, it did. I was diagnosed this week with a very rare auto immune disease named SAPHO syndrome. There is very little known regarding this syndrome, but my drs suspect that again the implant is the culprit. Seems this new syndrome can be caused by a viral infection or auto immune disease. Needless to report, I am feeling very distressed about this new diagnosis. I wonder what is next? I wonder if any other women that have silicone toxicity syndrome have also developed this, or are in danger of developing this syndrome. My SAPHO syndrome was diagnosed primarily by a routine bone scan. This shows some bone changes characteristic of the syndrome, and my dr confirms the associated symptoms related as well. This syndrome affects the bones, with severe inflamation and growth changes, the snyovial fluids, ligaments, rashes on hands and feet and of all things acne. I would be very grateful to corespond with anyone that may have information or has developed SAPHO syndrome. 

Thank you for taking the time to read my story,  

Asthma COPD

Allergies,Foods, pollen and mold

SAPHO syndrome:Synovitis, Acne, PalmoplanterPustulosis ,Hyperostosis, Osteitis definitions

SYNOVITIS......inflammation of a synovial membrane usually with pain and swelling of the joint.

ACNE.....

PALMOPLANTAR PUSTULOSIS....rashlike, puss filled bumps on hands and feet.

HYPEROSTOSIS... excessive growth or thickening of bone tissue.

OSTEITIS..... inflammation of bone --called also ostitis.

PATHOGENESIS ....unknown-bacterial or viral infection and autoimmune disease or a foreign object close to the bone have been suggested.

PATHOLOGIC FEATURES....nonspecific inflammatory changes; acute stages, bone resorption; later, fibrosis and increased occurrence of osteoblasts with new bone formation. bone changes can sometimes affect the clavacals, rib cage and mandible causing teeth, jaw and ear problems. bone growth can cause pressure on the auditory nerve, resulting in ear problems, hearing loss and deafness. 

Silicone Toxicity Syndrome

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

Trigger thumbs

Poly Arthritis

Peripheral Neuropathy

Raynaud's Phenomenon

Connective tissue diesease

Memory and Cognitive problems

Meniere's Disease

Dry eyes and mouth

Depression

Fibromyalgia

Stomach problems

Ovarian cysts

Kidney stones

Pydorial cyst

Myofacial Pain Syndrome, root resorption

Morton's Feet

Hypoglycemia

Epstein Barr

Spina Bifida

Deviated Septum

Torn Miniscus, both knees