May, 1995

Dear Silicone Survivors and Friends:

I have just returned from London where there was a meeting for many United Kingdom women. They were quite receptive to the message I brought and many of them expressed interest in starting a support network. I took newsletters and many handouts, including the MedWatch form. I am mailing about 25 British women information packets. I feel that we are succeeding in getting the message out to English speaking countries. I hope that we can achieve the same results in non-English speaking countries, as there are many problems with implants in these countries also.

When you receive this I will be in New Zealand and will address a meeting there. I will take a copy of the documentary tape by Baxter Gentry and hope we get a chance to watch it. I will be in San Francisco May 7th to 9th and then home for a couple of days before heading for the Washington, DC conference. I plan to take my walking shoes for the March on Washington.

Since our inception in 1991 to March 31, 1995, our total income has been $116,420.98, including $18,145.64 supplied by myself the first two years. Costs have been: Postage and copies, $37,984.78; Office Equipment and Supplies, $14,751.07; Products for Sale (Income generating-including videotapes, books, T-Shirts, etc.), $14,469.00; Conferences & Meetings put on by C.O.S.S., $7828.44; Telephone/FAX, $4,399.20; Travel, $24,188.62; Miscellaneous and all Other Expenses, $11,614.31; with a March 31st balance of $1,185.56. The travel expense has also generated a lot of the income because of the availability of books, T-Shirts, and other products. Total income from all sources in 1993 was $27,627.25, including about $10,000 from newsletter subscriptions. Total income from all sources in 1994 was $56,131.54. The majority of the 1994 income was from donations, product sales, and literature, with approximately $12,500 coming from newsletter subscriptions. Our costs versus income are high because we are non-profit and don't try to have a profit margin. We only attempt to cover costs. We have sent out about 6000 packets at an average cost of $4.00 to $5.00 each for an approximate cost of $27,500.

I have heard that there have been a few criticisms about how I spend coalition dollars. While I understand that we all want the coalition to be efficient and work for the women, I would also remind everyone that it is because of my efforts that we have raised these funds. I assure all of you that the money generated is not wasted and that we are all working for the same cause. Please, let's try to find a way to work together to raise more funds so we can help women who have problems. My efforts are now global and I share our message in other countries as often as I can. I hope we can become a world network and all work to end this type of human experimentation.

Would you like to make a difference? I think that we should work on getting the message out to young women and girls that they don't have to change their bodies to be OK, to be loved and attractive and sexy. I think we should go into the schools and talk with girls (and boys) in the middle schools, junior high schools, and high schools and spread the message about how dangerous it is to place foreign objects in our bodies to alter our appearance. It needs to be a positive message, one of love and understanding of where the fears of not measuring up come from. Let me know what you think!!!

Some bad news: Dr. Patton will not be at Baylor College of Medicine after June, 1995. I understand that he was basically forced out by some who did not believe in what he has been doing. Unfortunately, this probably means that Britta Ostermeyer-Shoaib will also leave. If we receive any more news about this, we will pass it on. We all need to remember that supporting us is very political and some will suffer repercussions from it. Send them your support and let them know how much they are appreciated.

UPCOMING EVENTS: May 13-14 Conference with March on Washington Mall. Be there!! It is the happening event of the year!! The press will be there!! You can have an impact on this issue by your presence!! Send someone to march for you if you can't come. Come and get a wheelchair if you can't march. If you can't sit through a conference, come and join the march. If you live in the Washington area and want to march but can't afford the conference, then come and march. If you have wanted to find a way to make an impact but haven't been able to do so, this is one way. If you cannot come, organize a march on the Federal Building in your area. Have as many women as possible join you. You can make an impact in this way.

LEGAL INFORMATION: Class action lawsuit: We now are receiving information about the FYI forms that you received in the mail. Some members are telling us that every woman has to send these in. Some attorneys are advising us to have every woman send them in. I called the claims office at (800) 600-0311, and they referred me to the Legal Assistance Line (513) 651-9770 and the Plaintiff's Liaison Council at (800) 960-6784. You need to speak with your attorney to see if she/he feels that you should file these papers. If you don't have an attorney, call the above numbers. I plan to file the forms.

The thinking breaks down this way: 1) Nowhere on the FYI form does it state that you should not file this form if you have a grid claim. 2) No one knows if they have an approved disease compensation claim because no one has been notified by the claims committee that they do. 3) Nowhere on these FYI forms does it state that every woman who has a claim must file these forms.

On the other side, there is fear that women with marginal claims will be bumped down to one of the Funds (I-V) if they submit these papers. The other concern I have heard from attorneys is that submitting these claims will artificially inflate the $$ amounts needed for these funds. The FYI forms are not self-explanatory, leaving a wide space for divergent views. I think that we all should send them in just to cover ourselves.

The claims line states that over 400,000 registrations have been received and that they should have information by the end of April on how many of these also contained claims. They will also announce by the end of April just how long it should take to review all of these claims to see if they are complete. There is no indication on how long it will take the court to act on the insurance company and foreign claimants appeals, so any date for a pay-out is uncertain. These appeals, if rejected, will probably be appealed to a higher court.

Now for the good news: Judge Pointer has now acted on the requests to add Dow Chemical to the class action lawsuit. He has decided to include Dow Chemical as a defendant in MDL-926. This does mean that more money will be available for the women's claims. He has also announced that there will be a reduction in the claims' values. The amount of the reduction is speculative, at best. I know that we have all been warning you all that this would be the case for a long time, but the reality is now here. Judge Pointer has stated that he will soon have more of an idea about how much they will be reduced and whether we will receive the pay-out in one payment or in several. He will also soon announce when we will be given the time schedule for information on just when we will know how much is in the grid amounts for each category. We must remember that no class action has ever given the victims very much of a deal, and, given the fact that there are so many claimants, we are lucky if we get as much as half of what we were told we would get. Opting out will probably tie you to any tort reform if it passes (now going on in Congress) unless your claim was filed in court prior to joining the class action. Manufacturers will not be in a position to pay large settlements. If there are massive opt- outs, bankruptcy will be their out. Most of us will have to settle for what we get and then get on with our lives. I know that many of you have thought I was being pessimistic when I warned you about the possibility of a reduction, but I have seen what happens with class actions in the past and I knew this one would be no different. Look for this to take until at least 1997 to resolve. Don't expect any money in the near future.

You can still register for the class action as a late registrant. Call (513) 651-9770 or FAX (513) 621-6420 for information.

Some foreign claimants are complaining that their attorneys are planning to take a large share of their settlement, even though the class action specifically has set aside a fund to pay them. I think that any women with this problem should notify the court and Judge Pointer.

MEDICAL INFORMATION: Thyroid Problems: There are a number of problems with the thyroid gland but there are two types which are the most common. Thyroid glands can become overactive or underactive, causing any number of symptoms. The thyroid gland is small, butterfly shaped, and lies near the trachea (windpipe) and the larynx (voice box) in the neck. The thyroid gland requires the substance iodine to produce its hormone, thyroxine. TSH (Thyroid Stimulating Hormone) is created in the pituitary gland and stimulates the thyroid gland, so the pituitary gland must be functioning in order for the thyroid gland to function properly. All the body's metabolic processes are affected by hormones from the thyroid gland. (Metabolism = the sum of all physical and chemical changes that take place within an organism; all energy and material transformations that occur within living cells.) If there is too much thyroid hormone, metabolism speeds up, if too little, metabolism slows down. A goiter (any swelling or overgrowth of the thyroid gland) may be the first signal that something is amiss with the thyroid gland. Iodine deficiency used to be the most common reason for thyroid disease, but that is not the case today. The hormones created by the thyroid, T3 (triiodothyronine) and T4 (thyroxine) are bound to certain proteins for transport throughout the body. The major thyroid transport protein is TBG (thyroid-binding globulin 80%). Other proteins account for the additional 20%. Most T3 is actually formed in the liver from the outer ring of T4.

An overactive thyroid, hyperthyroidism, is the result of excessive production of thyroid hormone. Graves' Disease is the most common disorder of an overactive thyroid. Symptoms include increased appetite coupled with weight loss, insomnia, rapid heart rate (tachycardia), muscle weakness, tremor, increased sensitivity to heat, hot and flushed skin (moist), diarrhea, increased sweating, and feelings of anxiety and nervousness. An appearance of bulging eyes may occur and a goiter may show up. Less common causes for hyperthyroidism than Graves' disease are tumors of the pituitary, thyroid, or placenta.

Besides Graves' disease, another form of an overactive thyroid is Thyroid Storm, a abrupt onset of symptoms of thyrotoxicosis, a toxic condition caused by overactivity of the thyroid gland. It can be fatal if left untreated. All the symptoms of hyperthyroidism are exaggerated and accompanied by muscle wasting, extreme restlessness, wide emotional swings, confusion, psychosis, and even coma. This disease may be precipitated by infection, diabetic acidosis, fright, trauma, surgery, embolism, toxemia of pregnancy or labor, discontinuance of thyroid medication, or radiation thyroiditis.

Toxicosis is another form of hyperthyroidism. T3 and T4 are both increased in patients with hyperthyroidism. If only T3 is elevated, T3 toxicosis is created. It also may occur with other thyroid disorders. T3 toxicosis should be treated as an early form of hyperthyroidism. Toxic adenoma and toxic multinodular goiter (Plummer's disease) are other disorders of the thyroid. This shows excessive T3 and T4. These diseases are treated surgically or with radioiodine to destroy part of the thyroid. Thyrotoxicosis factitia is yet another anomaly of the thyroid caused by overdosing on excessive thyroid hormones. No goiter is present in this condition. Secondary hyperthyroidism may occur through over-production of thyroid hormone by the pituitary. Struma ovarli is a generally benign ovarian teratoma (abnormal growth) which contains thyroid tissue. 5% of patients with this condition develop thyroid problems. Removal of the teratoma generally reverses the condition.

Treatment of hyperthyroidism has a number of approaches. Iodine inhibits the release of T3 and T4 within hours. It is generally not used for routine treatment. Antithyroid agents such as propylthiouracil and methimazole are commonly used. These are not usually used with hormone replacement therapy. All these drugs have potential side effects, so be sure to work closely with your doctor if placed on any drug. B-Adrenergic blocking drugs like propranolol are commonly used if the thyroiditis is caused by adrenergic stimulation. Radioactive sodium iodine is used to destroy part or all of the thyroid when indicated. Surgery is indicated when radioactive sodium iodine cannot be used.

An underactive thyroid, called hypothyroidism or myxedema, is an autoimmune disorder. In the most common cause, the thyroid gland is attacked and slowly destroyed by the body's immune system. It appears as shrunken and fibrotic and has little or no function. There are other causes besides autoimmunity, including a lack of TSH from the pituitary. This problem may also occur from severe hyperthyroidism in which a goiter blocks the function of the thyroid or from severe iodine deficiency, rare in the US or developed countries.

Secondary hypothyroidism occurs when the pituitary fails to secrete enough TSH or the hypothalamus fails to secrete enough TRH (thyroid-releasing hormone). Hypothyroidism can be identified by the characteristic slowing down of body processes. Symptoms are barely noticeable at first, but then one begins to be lethargic, has aching muscles, a growing intolerance to cold, hair loss, forgetfulness, personality changes, yellowed skin on soles and palms and even constipation. Often weight gain, even with decreased amounts of food, occurs. The face may become puffy and the skin dry. The voice may deepen. Feelings of depression and increasing lethargy are often common. More symptoms may occur as the disease becomes more severe.

Hashimotos's Thyroiditis (also called Chronic Lymphocytic Thyroiditis, Hashimoto's Struma, or Autoimmune Thyroiditis) is a chronic inflammation of the thyroid with lymphocytic infiltration of the gland thought to be caused by autoimmune disease. Women are most likely to be afflicted (8:1) and usually between the ages of 30-50. The thyroid gland is usually enlarged, but painless, or fullness is felt in the throat. Only 20% are initially diagnosed with this disorder, others have autoimmune disorders such as rheumatoid arthritis, lupus, and Sjogren's. Endocrine disorders may co-exist with thyroiditis, such as diabetes, Addison's disease, and hypoparathyroidism.

Subacute Thyroiditis (also called Granulomatous, Giant Cell, or de Quervain's Thyroiditis) is an acute inflammatory disorder of the thyroid caused by a virus. A history of mumps is common. A sudden sore throat (or sore neck) with tenderness of the thyroid are common, coupled with a low-grade fever. Pain frequently radiates to the ears and jaw. This type of thyroiditis is usually self-limited and subsides within a few months, occasionally recurring. Silent Thyroiditis is a subacute form that occurs postpartum, is self-limited, and usually returns to normal within a year or two.

Treatment of hypothyroidism is also varied. Replacement therapy is necessary, including synthetic thyroxine, liothyronine, combinations of the two and desiccated animal thyroid. T3 should not be used alone for long-term replacement therapy. When replacement T4 is given, increases in serum T3 occur gradually over weeks, reaching a normal value about eight weeks after starting therapy. This is preferable to a rapid T3 increase. Desiccated animal thyroid preparations are variable in potency and should be carefully monitored. Treatment of Hashimoto's thyroiditis is a lifelong replacement with thyroid hormones.

Goiter (also called Euthyroid Goiter, or Simple, Endemic, Nontoxic Diffuse, or Nontoxic Nodular Goiter) is often caused by the development of nodules, usually benign, on the thyroid gland or by thyroiditis (see above). Goiter can accompany most thyroid disorders and also can be caused by drug therapies, such as sulfas, lithium, iodine in large doses, and aminosalicylic acids. Goiter is not usually the problem but the result of the problem. In some cases, surgery is necessary to remove damaged tissue.

Treatment of goiter depends on the cause, which must be identified. Suppression of the hypothalamic-pituitary axis with thyroid hormone will block the TSH stimulation that leads to goiter formation. Full replacement dosages are necessary. Large goiters sometimes require surgery to prevent interference with breathing and to correct cosmetic problems.

Thyroid cancers also occur. Most thyroid nodules are benign and most thyroid cancers are not highly malignant. Younger people are more susceptible to thyroid cancers. Other susceptibility factors include sex (a nodule in a man is more suspicious since they have less thyroid disease), a singular nodule, a history of radiation exposure to the head, a cold nodule on RAI Uptake, radiographic evidence of fine, stippled, calcification or dense, homogenous calcification, recent or rapid enlargement, or the lump being stony-hard. Most thyroid cancers are less dangerous in young people and more dangerous in older persons.

Treatment varies for thyroid cancers. In the more dangerous forms of cancer, the entire thyroid gland is removed as well as any affected tissue surrounding it. Chemotherapy may be indicated. Lymph nodes may be removed to search for positive cells. Less radical treatment is utilized for cancers that are not highly malignant.

Tinnitus: If you had tinnitus prior to explantation and it has gotten better since implant removal, please contact me. I have not yet had any reports of women's tinnitus (ear noise) problems improving and I am wondering if any of you have heard of this problem getting better.

Sources of the above medical information are: 1. Columbia University College of Physicians and Surgeons Complete Home Medical Guide 2. Merck Manual 3. Taber's Cyclopedic Medical Dictionary

LABS: Women are already getting tested for multiple myeloma (Immunosciences Lab (800) 950-4686) and a number are coming up with positive results. I encourage women who think they may have this problem to be tested. Apparently there are treatments, so knowing that there is a problem is a step in finding help.

A tape on the radio show "Here's to Your Health" featuring Victor Conte of BALCO Labs, explaining the free radical and anti-oxidant testing, the multi- element analysis and metal analysis (describing deficiencies and/or overloads of trace elements and metals), and the SeraSil test is available for $10.00 from BALCO. Call them at (800) 777-7122 to order. They take MC and Visa, checks, and money orders. See tests, except for SeraSil test, at the end of this newsletter. If you want to improve your health, find out just what your free radical load is and find your level of toxic metals and other trace minerals so you can achieve a balance, this tape will give you the information. If you have a deficiency of magnesium it can cause chronic fatigue or muscle cramping. Other imbalances also cause physical problems. Find out what your levels are so you can improve your health.

There is a lab test for anti-adrenaline antibodies that are found in Addison's Disease.

ALTERNATIVE MEDICINE: Mothers who smoke when pregnant, even in the earliest stage of pregnancy before they are aware of their pregnant status, are six times more likely to have a child with a cleft palate.

From Carol Ann Young: Having Flushing Episodes: Totally eliminate all dairy products from your diet and see if they stop. Many people are allergic to dairy products. Also, the bovine growth hormone in most milk may be the problem. Eliminating sugar may also decrease the sweats. To binge on sugar makes insomnia worse.

Acupuncture: What is it and how does it help us? Acupuncture alleviates pain and can increase immune response by balancing the flow of vital life energy throughout the body. It is a complete system of healing and provides effective treatment for numerous conditions from the common cold and flu to addiction and chronic fatigue syndrome.

Acupuncture originated in China over five thousand years ago. It is based in the belief that health is determined by a balanced flow of chi (or qi), the vital life energy present in all living organisms. We all have twelve major energy pathways in which chi circulates in the body. These are called meridians and each is linked to specific organs and organ systems. There are over 1000 acupoints (pressure points) within the meridian system that, when stimulated, enhance the flow of chi. Insertion of a needle into these points helps to correct and rebalance the flow of energy and thereby relieve pain and restore health. Research has shown that there are specific relationships between acupuncture points, meridians, and the electrical currents of the body. Acupoints have a higher level of electrical conductance than other bodily sites.

Conditions benefitted by acupuncture include migraines, sinus problems, asthma, addictions, ulcers, gastrointestinal disorders, trigeminal neuralgia, Meniere's disease, speech aphasia (loss of language abilities due to brain damage), sciatica, osteoarthritis, allergies, environmental illnesses, colds, etc. Hormonal imbalances may be helped by this treatment. Acupuncture can bring relief from pain by releasing powerful natural pain killers called endorphins and enkephalins. It has been used to replace anesthesia in surgeries.

Most acupuncture treatments involve only a few needles. They are basically painless, although a slight skin prick may sometimes be felt. Needles are of different sizes and lengths but generally very fine and sharp. They are made of stainless steel. Most acupuncturists dispose of needles after each treatment to avoid any risk of exposure to disease. Treatments may be very short or last up to an hour. Acupuncturists may recommend changes in diet, lifestyle and exercise to augment their treatment.

Acupuncture, unlike allopathic medicine, does not place chemicals inside the body and it works with the body's own system to help you heal. Once people try it, they often wonder why they waited so long to receive this type of help.

Some of this information came from the book 'Alternative Medicine, The Definitive Guide'.

BOOKS: Acupuncture: Is It For You? J.R. Worsley. Harper and Row, 1973.

IMPORTANT: The FDA has informed one of our members that no recall of breast implants has happened because one has not been requested. Now, don't you think that is interesting. Why don't we all write to the FDA and request a recall of our particular brand of defective product. The address is: Mr. Paul Tilton, FDA Office of Device Evaluation, (Capitol HFZ 410), 1390 Piccard Dr., Rockville, MD 20850.

If you are having difficulty qualifying for SSD with a diagnosis, try chronic fatigue syndrome (CFIDS) or Immune Deficiency Syndrome. These should be accepted. Some women have Lupus diagnoses, some have other diseases that are recognized. Don't buck the system to get your silicone disease recognized if you need to be approved. Go with a disease that has been established.

The latest FDA statistics on problem reports on silicone implantable devices are: Silicone Implants, 92,046; Saline Implants, 19,706; Penile Implants 20,636; and Testicular Implants, 121. No reports on deaths were sent to me with this request (although there were part of my request), but the FDA did charge me about $40.00 for this one sheet of information.

QUESTIONS AND ANSWERS: Q. Since I haven't heard from the class action that they need more documentation in order to substantiate my claim, does that mean that my grid category has been accepted? A. No, not necessarily. It just means that they have not yet been able to check all the claims to see if they need more documentation. I don't expect these letters (requests for further documentation) to come out until fall, or even winter. If your claim has been established by a doctor who fits the categories set up by the MDL Committee and if your documentation is adequate, you will probably be OK. They are checking claims for fraud and for lack of proper documentation. Those women who sent in claim forms without a diagnosis and with less than adequate documentation will probably receive these letters, but many others probably will not.

PERSONAL COMMUNICATION: Carolyn Larsen would like to hear from Colorado residents with Principal Financial-Ethix Sloans Lake Insurance. Write to her at 12040 Mesa View Rd., Larkspur, CO 80118 or call at (303) 688-6921.

Do you have information on Porex Implants? If you do, please contact Ruth Ann Fike, 2418 Travelers Palm, Edgewater, FL 32141 or call (904) 428-2442.

Pam Burrell needs a copy of a 1985 to present day Dow Corning Tissue Expander package insert. Call her days at (800) 435-6100, evenings at (407) 747-0443 Eastern Time, or FAX her at (407) 747-0352. Also, if you know of or have any medical journal articles supporting that the standard of care in 1990 or before was to remove the entire breast implant capsule, please notify Pam. She has a hearing May 9th for which she needs this information.

If you have had cancer since having breast implants, call or write Georgia Cillo, P.O. Box 315, Lake Oswego, OR 97034 (503) 697-7956. We recently lost a woman in Denver with liver cancer after long-term implantation. We don't have proof of a connection, but it makes you think.

Phyllis Rowlands has found a product, called LifeTronix, that has helped her tremendously. Call her at (310) 393-9079 or write to her at 1131 California Avenue, Santa Monica, CA 90403.

A silicone sister who has found help from herbal products wants you to know about them. Contact Trudy Agres, Harmony With Nature, P.O. Box 663, Parlin, NJ 08859 or call her at (908) 525-0197 or (800) 484-7433 Sec. Code 6238.

PRODUCTS AVAILABLE: Pycnogenol, the free radical scavenger, is available from C.O.S.S. for $30.00 plus $2.00 shipping and handling. Colorado residents add $2.21 tax. Juice Plus, the natural food enzyme product, is also available for $179.00 for a four month supply and $50.00 for a one month supply.

The Snow System: A bra, called the Snow Bra, is available for after-surgery wear. It eliminates the elastic bandages that surgeons wrap you in and has a number of features, such as adjustable shoulder straps, front closure, long torso and no open seams. It was designed by women and surgeons and helps postoperatively for cardiovascular and thoracic surgery recovery. It can be used as a sport's bra also. It comes in five sizes, from small to queen size and costs $40.00. For information, contact Lisa Snow, 1789 North 1690 West, Layton, UT 84041 or call (801) 773-9462.

DISCLAIMER: The opinions expressed here are those of the editor and any contributors and are not to be construed as medical or legal advice. Any articles or information submitted may be edited because of space, content or grammatical errors.

COPYRIGHT: Our purpose is to disseminate information and provide support. This material is copyrighted so that we may retain control over content. You may reproduce this document as long as it is not done for profit and as long as no material, including copyright and subscription information, is changed.

DONATIONS: The Coalition of Silicone Survivors is a not-for-profit, tax-exempt corporation with over 4000 members world wide. Our editor, Lynda Roth, is a survivor having heard the dread word 'cancer' followed by the reassuring 'will look like a normal breast'. In addition to having helped start many support groups, Lynda has appeared before the FDA, congress members, national TV in the US and other countries and lectures internationally. Your donation will definitely help others receive information about the dangers of implants. IF READING THIS NEWSLETTER HAS HELPED YOU, AND YOU THINK OTHERS SHOULD HAVE A CHANCE TO RECEIVE OUR MESSAGE, WE URGE YOU TO GIVE GENEROUSLY. Donations are tax deductible in the United States.

As a member you will receive a highly informative information packet and this newsletter, including the CURRENT ISSUE for the next 12 months. Remember in the US it's tax deductible. Your help is critical.

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