COALITION OF SILICONE SURVIVORS

March, 1995

Dear Silicone Survivors and Friends:

The Boise conference was a great success and Jill Wood did a wonderful job of organizing and putting on this conference. Dr. Linda Huang, Plastic Surgeon and MicroSurgeon of Denver, traveled all the way to Boise just to catch up on the latest information regarding implants. (I was impressed.) The speakers were wonderful, as usual.

I know that many of us have been spending a lot of time and money on medical treatment. I was shocked, however, to find that I had paid over $11,000 for medical expenses in 1994. This doesn't count the amount my health insurance paid or the amount I spent at health food stores. Ouch!

There was an interesting meeting in Salt Lake City on Friday, February 24th. The meeting was set up by Linda Williams, Rocky Mountain Center for Occupational and Environmental Health, Dept. of Family and Preventive Med., Bldg. 512, Univ. Of Utah, SLC, UT 84112. Dr. Ralph Cook, an environmental specialist from Dow Corning was invited to speak at the University of Utah. What Dr. Cook didn't know was that, since the meeting was open to the public, many silicone/saline implanted/explanted women also decided to show up, as did the media. Dr. Cook proclaimed the party line about the lack of danger of silicone and the lack of causation for any autoimmune disease. He did not seem prepared, however, for the anger of some women who had serious health problems and for the onslaught of questions that followed his talk. He criticized the study by Drs. Levine and Ilowite as being a conflict of interest since the persons studied came from CATS and Denise Dunleavy. He didn't mention the 1975 Dow study that showed that silicone crossed the placental barriers in mice. Of course he didn't mention his bias as being a paid employee of Dow Corning. He pooh-poohed the fact that there is a new disease caused by silicone. He denied that Dow helped fund the Mayo study, but danced his way around the real facts that money from Dow did help pay for the study. He said that silicone breast implants are currently FDA approved. All in all, he sounded like you would expect from a Dow employee who knows just what side his bread is buttered on. He was heard to say, just as he was preparing to get into an elevator, that he would not have come had he known all these women were going to attend this meeting. It was interesting to note that security was there in force just in case these ill women might get out of hand. Ms. Williams, who arranged the meeting, stated that it was just your average protest. She certainly got a earful from a few of us after that remark. If you would like to educate her about all the dangerous silicone and other implantable products, write to her at the above address.

UPCOMING EVENTS: Judy Maag (517) 886-1412 of the Mid-Michigan Survivors of Breast Implants (MMSBI) will sponsor a seminar on April 1st. She has added Dr. Nachman Brautbar to her list of speakers. The list includes Drs. Blais, Vojdani, Campbell, Karjoo, Ostermeyer-Shoaib, & Feng. Quite a line-up!! I will be there and I hope that many of you will be also. We need to support each other in our efforts to inform all women about breast implants. Take advantage of the expertise of these specialists and go to conferences like this!! Call Judy Maag at ((517) 886-1412 for more information. Cost for consumers is $45.00 if prepaid. Mail to Judy Maag, 852 Elmwood #222, Lansing, MI 48917-2070. Call the Holiday Inn at (517) 627-3211 for the $65.00 per night guaranteed room rate (1-4 persons). Mention MMSBI. Double up and save $$. Share your room with a silicone sister!!

Triad Silicone Network's conference and march on the Washington Mall is coming up fast. Speakers for this conference will address issues regarding all types of silicone devices. Make your reservations now for this important event that will be held on May 13th and 14th. I already have my airline reservation and plan to be there. Speakers for Saturday include: Dr. Saul Puszkin, Dr. Lu- Gene Feng, Victor Conte, Dr. Robert Lewy, Dr. Jeremiah Levine (tentative), & Dr. Britta Ostermeyer-Shoaib. Speakers for Sunday include: Dr. Aristo Vojdani, Dr. Andrew Campbell, Dr. Nachman Brautbar, Dr. Henry Jenny, and Dr. Pierre Blais. Cost of conference: $85.00 consumer, $160 couple, $110 professional (Visa & MC accepted). Call Jill Stone (910) 854-5338 or send registration to Triad Silicone Network, P.O. Box 7631, Greensboro, NC 27417. Hotel costs (Washington DC Renaissance Hotel (202) 898-9000) $99 double, $109 triple, $119 foursome. Share a room with a silicone sister. Rumors that this conference and march have been canceled are just that, rumors!! It will be held as scheduled.

The World Conference on Women will be held in Bejing, China on September 4- 15th. This year's theme is Environment and Toxicity. To become a member of the World Conference on Women, send a check for $5.00 to $25.00 (as much as you can afford) to U.S. Network for Women/Tides Foundation, 1001 G. Street NW Suite 800, Washington, DC 20001. Make check payable to U.S. Network for Women/Tides Foundation. Ask this organization to be sure to address the breast implant problem (as well as Norplant and other silicone implantable devices) at this conference. This is an important issue affecting all women everywhere.

There will be another march on Washington by breast implant survivors in July of 1995. Contact Toni Butts, of S.I.S. (504) 469-0277 for more information.

LEGAL INFORMATION: Class action lawsuit: Over 350,000 women have registered as of 2/27/95. If many of you were confused by the FYI letter from the MDL, you were definitely not alone. Many women didn't seem to know whether to send in the detachable sheets or not. Call the numbers on that newsletter if you have questions about whether to send in the forms. Many women were upset about the information that there would be no quick settlement. We have tried to convey this information for some time, but it seems that hope springs eternal. Don't expect any money before late 1996 or early 1997, at the earliest, and then, if it comes any sooner, you can be pleasantly surprised. If you have few expectations as to when the monies will be disbursed, then you won't get your hopes up. I personally don't expect anything until 1997.

TORT REFORM: If you haven't been paying much attention to politics in Washington, DC, then you may be surprised to again learn that the Congress is up to no good again. They are trying to pass tort reform laws that will severely restrict your rights to sue for damages from defective products. Manufacturers could not be held liable unless it could be proven that they acted with negligence. Damages to each defendant would be limited to their part of the liability, not as it is today in most states where any one manufacturer is liable for the entire costs. You would not be able to sue if 15 years had passed since you received the product (unless you could prove that the product caused serious illness to many, which, as we all can see from the lawsuits, is very hard to prove). Punitive damages would be limited to $250,000 or three times the compensatory damages. If a drug or medical product has been approved for use by the FDA, you could not sue the manufacturer. In many cases the standard of proof would become more difficult.

This measure would have made it impossible for most of us to sue the manufacturer of our breast implants. It would sharply curtail access to the courts by consumers who have suffered injuries. Women with the Dalkon Shield would probably have been unable to sue under this type of law. What this tort reform does is give these manufacturers a Federally endorsed license to kill!!!

This bill is called H.R. 956. Write to your congresspeople and tell them that you do not support this bill. Call their local offices. Don't let them victimize us again with their so-called tort reform. The support for this bill comes from the manufacturers and the Republican party. Write the President so that he will never sign a bill like this. Call Public Citizen (Lee Butler 202-833-3000) and ask them what you can do to help fight this bill. In 1992 I went to Washington, DC to help fight this type of bill. Gail Armstrong's group did the same last year. WE NEED YOUR HELP!!!!! Once passed, we would probably never be able to get this bill overturned.

Call Amy Walter at (202) 965-3500 x505 to see what you can do to help her with HR 10, called "Common Sense Legal Reform". She is organizing an effort to stop this so-called tort "reform". It will be voted on this week. We, the citizens, should be the ones to hold wrongdoers accountable, not our government. Do you see laws that would punish people who knowingly put dangerous products on the market? When is the last time one of these company presidents went to jail for producing defective products that kill? They are trying to take away your rights!! Fight back now!!

DOW CHEMICAL LOSES IN TEXAS CASE: A nurse won her case against Dow Corning and Dow Chemical in this Houston case. No punitive damages were awarded. Dow Chemical was held liable for 20% of the total cost of $4.2 million for the nurse and $1 million for her husband. This was a joint suit, but the other woman who sued, a doctor, lost her case. The jury felt that she should have understood the risks. Another case, in Brownsville, TX against Dow Corning, was lost. I don't have many facts on this case.

In Jackie Hall's San Diego case against Baxter (which lost in January), a motion for a retrial has been filed. If this fails, the verdict will be appealed.

Brenda Toole won her case against Baxter ($6 million) after losing it on appeal the first time. We hear that she won $6 million. Congratulations, Brenda.

A California law firm, Berlin and Albert, is taking Norplant silicone cases for the class action lawsuit. Call (619) 729-7979 for more information.

This one seems to come under the heading of PURE GREED: It seems that Mariann Hopkins still does not have her settlement because of a conflict by a former law firm that feels they are entitled to the entire 40% of her settlement (which would leave Dan Bolton, the actual attorney who won the case, out in the cold). It seems to go this way: When Mariann first saw Dan Bolton on TV he was with the Hersh firm. She hired him at that time to be her attorney. When he left there, she cancelled her contract with them and signed one with Dan Bolton. He had moved to the firm of Ropers & Majeski. She never signed a contingency fee agreement with this firm. When Dan Bolton moved from Ropers & Majeski, he took his client, Mariann, with him. The lawsuit was initially won while Dan Bolton was with Ropers & Majeski. Then there was the appeal which was handled by Lawrence Tribe (cost $1 million). Dan is now a partner in another law firm.

On June 10, 1993, Ropers & Majeski filed a lien against Mariann's settlement which stated that they were entitled to the full 40% of the contingency fee because of a contract with Mariann. When Mariann won her appeal, Ropers & Majeski wrote Dow Corning and stated that they would sue them if the check were not made out to Ropers & Majeski. Then Mariann wrote and stated she would sue them if the check were not made out to her. Dow then filed an interpleader motion, naming Ropers & Majeski, Dan Bolton, the State of California, and Mariann Hopkins. The money was finally released to the Federal Court in California (Jan. 31st), which still has it pending a hearing on who it really belongs to. The amount is $8.3 million.

Dan Bolton seems to be willing to give Ropers & Majeski a portion of the attorney fees as well as payment for any costs they have suffered (over $500,000). In fact, Ropers & Majeski had issued a bill for that amount which covered hourly fees. Ropers & Majeski contend that, by paying over $13,000 to the Hersh firm, they automatically acquired the contingency fee agreement they had with Mariann Hopkins. However, Mariann had cancelled it, by letter, on August 27th, 1990, 6 months before Ropers & Majeski paid Hersh the $13,000. Ropers & Majeski, however, seem to think they should have it all. They wanted Mariann to sign an agreement that she would cover the entire $1 million to Lawrence Tribe (instead of the 60% of that fee that she has negotiated with Dan Bolton) as a condition of releasing her part of the funds. In a newspaper article in February of 1995, LeRoy Hersh, of the Hersh firm stated that his firm was compensated for its services so it would appear that Ropers & Majeski has no claim to any monies from Mariann. Neither Ropers & Majeski nor Dan Bolton seemed to have a good answer as to why no contingency fee agreement existed with that firm when Dan was a partner, but it does appear to have been an oversight by someone. The parting of Dan from Ropers & Majeski was not too friendly.

Mariann blames Ropers & Majeski for the problems. She feels that her money should be released so that she can pay her attorneys what they have coming and that Ropers & Majeski should work their differences out with Dan Bolton. Dan seems to be willing to work things out, but not Ropers & Majeski. The end result of all of this is that Mariann is being victimized again, and this time by a large law firm who purports to be helping plaintiffs. Meanwhile, because of all the stress, Mariann's health has begun to decline again.

This information is from a San Francisco legal paper, The Recorder, and also from Mariann Hopkins and represents the editorial views of C.O.S.S.

MEDICAL INFORMATION: From the Medical Monitor (10/94): "A new substance, PEG (Polyethylene glycol) is being touted as the breast implant filler that will replace silicone gel and is superior to saline. Dr. Rod Rohrich, chairman of plastic surgery at the University of Texas Southwestern Medical Center discussed PEG at the recent annual meeting of the American Society of Plastic and Reconstructive Surgeons. The material, which is similar in texture to breast tissue, is already used in cosmetics, is not toxic and is absorbed by the body when ruptured. Moreover, it resists sloshing, a complaint common with saline implants. Dr. Rohrich, along with Dr. Ronald Freidman and Dr. Ildoko Byiemesi, also of UT Southwestern, have applied for a patent for the new material and plan to begin tests on human volunteers within three years. Tests on rabbits have yielded the current information."

Now, do you suppose they plan to put this new material in silicone shells? And don't you just wonder just how safe this material can be?? After all, they touted silicone and saline implants as 'safe' also, remember???

From S.I.S.T.E.R.S. Newsletter: TRAM FLAP: The use of transverse rectus abdominis myocutaneous (TRAM) flap surgery has spurred debate among physicians. Dr. Randolph Guthrie (Clin. Prof. Cornell Univ.) believes surgeons should not use stomach muscles to rebuild breast tissue. According to him, the risk of rebuilding breast using this method outweighs the benefits because women have died from vascular and lung blockages caused by relocating the abdominal fat. He criticizes plastic surgeons who tout a side benefit of the surgery as a tummy tuck, noting instead that many patients are left with 'dog-ear' scars and a larger waistline that before the surgery. The operation leaves an "ugly, scarred, misshapen blob of wide-pored abdominal flab that sits on the chest looking as though it had just come out of a crenelated Jello mold." Women who are dissatisfied with the results face additional risks if they choose corrective surgery, cannot do sit-ups or other abdominal exercises to relieve back pain, and are more and more vulnerable to abdominal hernias. Dr. E. Zoo (Prof. Surg. Illinois Univ.), past president of ASPRS, favors the TRAM flap.

C.O.S.S. comment: We have seen excellent results from TRAM flaps and we have seen disastrous results. The latter is most common. All the warnings about abdominal problems truly exist. In addition, the risk of infection is great and the mesh-net that is generally placed in the abdomen to replace muscle removed is another foreign object. It is extremely difficult to remove if there are problems. This type of surgery is very hard to endure for well persons, much less immune-system weakened women. Research this option very carefully before undergoing this procedure. There are additional risks, some of which are severe bleeding, shock, transference of cancer when done immediately after mastectomy, failure of the flap, infections (which are difficult to cure) and poor results.

Remember, there are several different types of flap procedures. There is the superior gluteal flap (from the top of the buttocks), the other flap from the bottom of the buttocks, the flap from the area of the saddle bags, and the flap from the back of the chest (pectoral). Some flap procedures are free flaps and some leave blood supplies and nerves connected. Free flaps disconnect all blood supplies and nerves and then reconnect them with blood supplies and nerves in the chest area. One abdominal flap procedure tunnels up under the skin from the stomach to the breast area. This procedure may seem like a good choice, but a large area of skin is disturbed and possibly left open to infection. All of these flap procedures have good points and bad points. For one thing, with flap procedures, no implant is used (except for the mesh net used in most abdominal procedures). If one has very large saddle bags or buttocks, there is the added benefit of a lift or reduction in size. Flap procedures don't get hard (encapsulate). Flaps can look like normal breast when done by a highly skilled microsurgeon. On the other hand, flap procedures require very long operations, loss of blood is common (which can require transfusions), the abdomen (if the donor site) can herniate, there are very large scars, one has to be hospitalized for a much longer period of time, etc. One must also be psychologically prepared for all of these factors in order to be a candidate for a flap procedure. Also, for a flap procedure from the abdomen, it is almost always necessary that no scars already exist in that area (ie., tubal ligation, appendectomy, or Caesarian Section). Check them all out before ever considering one and also talk to people who have had both good and bad experiences with flap procedures. You owe it to yourself.

If you are planning to have any surgery in the future, remember to ask about the content of the surgical mask that is placed on your face (it usually contains silicone) and also ask about the tape that covers the wound (the spongy tape contains silicone). We have heard of some nasty reactions to both of these products.

Permax worked to dry up the breast milk on one woman who had problems with leakage of breast milk while implanted. She tried Hydergene and also Parlodell, both of which failed to dry up the milk. Parlodell (which is often given after delivery to dry up a mother's breast milk) made her very ill. Several women have reported problems with leakage of breast milk. Some have been checked for tumors on the parotid gland, as developing breast milk when not pregnant is one common problem with parotid tumors.

LABS: Immunosciences Labs has a new panel entitled: Immunology Panel for Silicone Implants, Polyurethane Coated Implants and Norplant. It costs $650.00. See attached flyer. It includes silicone and chemical antibodies for polyurethane implants and silicone and hormone antibodies for Norplant. Another new test on this panel is Angiotesin converting enzyme.

ALTERNATIVE MEDICINE: L-Tryptophan is still available as a prescription from your MD. It is called Tryptan.

People ask me if I am ever surprised at anything that women tell me anymore. Yes, I am. But it's not the symptoms or the pain or the anguish they share. What surprises me is that many women continue to run from doctor to doctor looking for a miracle cure or an answer to their problems. So many of us have found that avoiding most medications and doctors and turning to natural remedies is what is helping us get better. I think that I would be dead today had it not been for my vitamins, Ultra-Clear, Aloe, Food Enzymes, Pycnogenol, and my hypo-allergenic, (almost) sugar-free, (almost) dairy free, (almost) night-shade free. and (almost) chemical and pesticide free diet. Our bodies are loaded with toxins from the implants, the surgery (or surgeries, as in my case), the environment, medications and our chemical/pesticide laden foods. When people ask me what I did to get better, I share this with them. What still amazes me is the number of women who continue to smoke, drink, eat sweets (of any kind), drink caffeine, and eat the wrong types of foods. While we all occasionally eat something we shouldn't, making a habit of it may end up killing us. So, for those who asked what still surprises me, this is it!!!

IMPORTANT: Dr. Michael Middleton is conducting research on all types of breast implants and needs information on 1988 Surgitek tear drop gel-saline single lumen implants. He needs the catalog and model numbers for this SCL series and requests that any copy of labels for these implants be sent to him at: Dr. Michael Middleton, UCSD School of Medicine, MRI Institute, 410 Dickenson Street, San Diego, CA 92103-8749.

INFORMATION AVAILABLE: For a free copy of Patricia Kelly's Personal Journey to Health Newsletter, send a self-addressed stamped envelope to her at 1742 Garnet Avenue #362, San Diego, CA 92109. (619) 273-2421 between the hours of 8 am and 7 pm (Pacific time). Patricia details how she has reclaimed her health, which is much the same way that I have worked on my recovery.

PERSONAL COMMUNICATION: "I am moving to the Asheville, NC area later this year and want to meet other silicone survivors for support and local information. Please write to: Judy Patience, 54 Willow Green Dr., Amherst, NY 14228 or call (716) 691-7647."

If you have had tinnitus (ringing in the ears) and it has improved or worsened (or stayed the same) after explantation, please contact C.O.S.S. with your experience. P.O. Box 129, Broomfield, CO 80038-0129. (303) 469-8242.

BOOKS: Food Enzymes: The Missing Link to Radiant Health by Humbart Santillo, MH, N.D. This book explains why we don't receive the necessary enzymes from our food and why we must take live enzymes to regain our health. Available from C.O.S.S. for $6.00 plus $.75 postage.

I have just reviewed the book "Breast Implants: Everything You Need To Know" by Nancy Bruning. While it contains a lot of good material, I came away with the distinct impression that Nancy favors keeping breast implants on the market. It is definitely a pro-implant book in many places, although both sides are covered. It comes complete with a recommendation by a pro-implant plastic surgeon. I did find some of the information helpful, but for women who have suffered from all the problems of breast implants, I don't recommend it unless you are totally aware of its pro-implant bias. This book could lead some women to believe that implants are safe. She quotes Dr. Peter Schur, who has since been dismissed from the Harvard Study for being biased, with his statement that saline implants did not increase the amounts of silicon in nearby tissues, thereby beginning to exonerate the silicone shell as a likely cause of systemic disease. As many of us know, women with saline implants may become even sicker than women with silicone implants. If you want to spend your money on a book about implants, there are better ones out there that really look at the truth.

PRODUCTS AVAILABLE: JoAnne Miller carries a natural herbal supplement which has helped her tremendously with her chronic fatigue. She will send you information if you call her at (909) 677-4676.

PYCNOGENOL, the free radical scavenger that I now take, is available from COSS. It comes in 20mg. tablets in a bottle of 60. The cost is $35.98 per bottle. Please send $2.00 shipping and handling for the 1st bottle and $1.00 for each additional bottle (per order). Colorado residents add $2.64 tax per bottle.

Juice Plus, the live enzyme supplements that help with digestion and with absorption of food, are also available from C.O.S.S. They are expensive, $179.00 for a four month supply. I have found that I am improving with these products.

SOMETHING TO CONSIDER: Attitude: Don't be afraid of opposition. Remember, a kite rises against--not with--the wind.

One's mind, once stretched by a new idea, never regains its original dimensions. Oliver Wendell Holmes.

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. Yes, I want to help

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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