April, 1994

Dear Silicone Survivors and Friends:

UPCOMING EVENTS: LOCAL: Denver-Aurora Meeting, Monday, April 11th, Jan, 7:00 P.M. 752-4596. Littleton-Englewood Meeting Saturday, Apr. 23, 1:00 P.M. Fern, 688-0234. The Colorado Springs group will meet the third Saturday of every month. Call Ginger at (719) 636-1492 for location and time. Any meeting you attend, please do not wear perfume or cologne as many women are chemically sensitive and have to leave meetings because many do wear fragrances.

Silicone Implant Meeting featuring Dr. David Miller, OB/GYN April 9th at Costa Mesa, CA. No charge. For info, call (714) 645- 9680.

The New Mexico Breast Implant Group will hold a conference on April 10th and 11th in Albuquerque, NM at the Quality Four Seasons Inn, 2500 Carlisle NE, (800) 221-2222. Current list of speakers includes Dr. Brautbar, Dr. Frank Shelock, Dr. Henry Jenny, Dr. Robert Guidos, Marie Walsh (BIIF), Mark Caruso (atty), Dr. Paul Karsh, Dr. David Hughes, Dr. Graham Wood, Tom Talcott, and more to be announced. For more information call Marsha Stafford (505) 293-3483.

The East Tennessee Breast Implant Symposium will be held at the W.L. Mills Auditorium in Gatlinburg, TN on April 16th, 8:00 A.M. to 6:00 P.M. at the Gatlinburg Convention Center, 234 Airport Road, Gatlinburg, TN. Speakers include Dr. Andrew Campbell, Dr. Nachman Brautbar, Dr. Aristo Vojdani, Richard Rosenthal (atty), Jama Russano, Marion Koch and Patty Scher (UNTOLD TRUTH), and Lynda Roth. Cost is $10.00 per individual and $15.00 for couples. Pre-register by calling Casey at (800) 982-8662. You may pay at the door but you must preregister.

April 25th and 26th, New York, NY. An attorney Symposium on Breast Implant Litigation, Current Medical and Legal Theories at the Plaza Hotel. Registration is $495.00. Call the Law Journal Information Telephone Number (212) 545-6111 or (800) 888-8300.

There is a conference in St. Louis, Mo. on April 24 (date) from 1:00 to 5:00 P.M. at the Holiday Inn Southwest sponsored by AS- IS. Cost for consumers will be $10.00, Professionals $25.00. Speakers include Dr. Robert Lewy, Dr. Samuel Lehman, Dr. Roger Khouri, Dr. James Kaplan, Dr. Thomas Osborn, Dr. Edward Ezrailson and Emerald Biomaterials Lab Director, Rich Furlin. Reservations required with payment in full. Send to AS-IS, 1288 Cork Elm Drive, Kirkwood, MO 63122. For special AS-IS room rate, call hotel at (800) 682-6338.

There is a conference in Bloomington, MN on Sunday, May 22nd, 8:00 A.M. to 7:30 P.M. at the Crown Sterling Suites, (Airport Suites), 7901 34th Ave.S, Bloomington, MN 55425 (612) 854-1000. Cost is $30.00 for consumers and $100.00 for professionals. Suites are $109 per night which includes evening social hour and breakfast cooked to order (double up, as they will sleep 4). There are other motels in the area, which is 10 blocks from the Mall of America, which is on the popular Southern strip of Highway 494. Almost any motel on that strip will be within a mile of the conference. Speakers are Dr. Henry Jenny, Dr. Jeremiah Levine, Dr. Robert Lewy, Dr. Norman Illowite, Thomas Talcott, Lynda Roth and Marion Koch. An attorney will be there to give an update on the global settlement. Tentatively scheduled: Dr. Douglas Shanklin or Dr. Luis Espinosa. For more information call Rita (715) 262-3929 or Sharon (612) 422-3890.

There is a National Medical Symposium in Cincinnati, OH on June 18th held at the Sheraton-Springdale. Confirmed speakers include Dr. Pierre Blais, Dr. Lu-Jean Feng, Dr. Mary Lou Logothetis, Dr. Aristo Vojdani, Britta Ostermeyer-Shoaib, Dr. Daniel Hoffman, and Dr. Stephen Edelson. Continental breakfast and a lunch will be provided. Call (513) 671-6600 for reservations at the hotel. For more information, write to Susan Boone, PALS, 18 Hollow Tree Court, Hamilton, OH 45013.

A VERY SPECIAL THANKS: To all the group leaders and others who put out excellent newsletters. I am using a number of pieces of information from the PALS newsletter this month. I often find information in many other newsletters. We all benefit from the sharing of information that comes from this type of exchange. COSS will share their newsletter with any group that publishes one without charge. Plaintiff attorneys and consumers may copy or reprint any COSS newsletter. The information belongs to all of you.

LEGAL INFORMATION: As we now look at the extreme probability of having a class action (global settlement), we need to reiterate that many attorneys will encourage their clients to not opt-out of this settlement. Many women will wish to opt-into this class because of many reasons. If you are willing to settle for the amount that they offer (and for most it will be a small settlement), then a class action may be the right thing for you. Be prepared for a very small settlement, no matter what any attorney says about settlement amounts up to $2 million. Only 1/3 of the initial monies (of the $1.5 billion) will be allocated for atypical illnesses (this is $500 million), and 90% of the women will fit into this category, which means that if 45,000 women are placed into this category each will receive a little over $10,000. This is before attorney fees and expenses. Payments will be stretched out over a 4 year period. It is unlikely that any settlements will be paid for at least two years. The exception to this may be explantation and testing monies. If you have excellent medical records and have everything well documented, then you may wish to proceed with an individual lawsuit. Be aware that they will drag out everything they can from your past, probably even things that you would never think about. We need women who will stand up for their rights and take the manufacturers to court. I am hoping that the majority of women will choose to opt-out and make the manufacturers pay for what they have done. If your attorney insists that the money is there to give you what is stated on the grid, ask them to take out a calculator and show you how the money is there to pay that amount to each claimant.

We are hearing about attorneys trying to have clients backdate contracts. Judge Pointer is concerned about attorneys trying to pull in clients through advertising. He also stated in court that attorneys may receive no more that 25% from women participating in the global settlement. Some attorneys may receive less. Apparently he has not signed an order to this effect, but probably will in the future.

The last bit of information that we have heard (and it is still a rumor) is that only those who opt into the global settlement will be allowed to participate in the fairness hearings for the global settlement. That means that all of us that have been fighting this battle, if we opt-out, will not be allowed to pursue this on behalf of those who do choose to opt-in. This sounds like an "Unfairness Hearing."

At this time, 3-M, GE, and McGhan have still not chosen to participate in the global settlement. I expect they will join later. Because they still have not contributed any monies, the amount now in the global settlement is a little over $4 billion. This is less than the $4.75 billion initially proposed.

Hopefully, by now you have all heard about the March 3rd $27.9 million victory in the Houston, Texas breast implant case. Three women sued McGhan, Inamed, and the parent company, 3-M. (divided three ways). The manufacturers were found guilty of conspiracy to hide the truth. My greatest concern is that many women who hear or read about this will think that their case may be worth that amount. In reality, very few women will even receive half a million. Most will receive MUCH less. We must keep this in mind. Even though we do not feel that justice is done by these minimal settlements, this is what is happening and will continue to happen.

Be very careful that you are the one that makes the decision as to whether or not to be placed into any class action. We are still hearing scare tactics by attorneys to try to pressure women into being included into any possible global settlement. There are risks either way. If you are included, you risk getting very little money. If you decide not to be included, you risk losing a lawsuit or you risk the companies going bankrupt. There are no guarantees, but you must be the one to decide which risks you will take.

Judge Pointer has set April 4th for the first case he will hear regarding breast implants. It will be in Federal Court in Birmingham, AL. This will be a multiple case trial with three women plaintiffs against Dow Corning. We wish them great success in fighting this giant corporation. Our hopes and prayers will be with them that they win this battle.

We hear that from one-fourth to one-third of the discovery in the MDL has not yet been completed. This means that the cases held up in the MDL may be held up even longer. The court is now asking for industrial studies which cover any industrial use of silicone.

The interlocutory order that Judge Pointer issued may eventually be reversed. Dow Chemical personnel will be subpoenaed by the court to give testimony. Apparently there was little if any discovery with Corning, Inc. and Dow Chemical before he issued this ruling. Stand by!!!

The platinum issue will just not go away. Platinum salts (hexacloriforicanic) are apparently neurotoxic. Platinum was used as a catalyst in forming the gel in most, if not all, silicone breast implants. The type of platinum used is also used as a chemotherapy agent, which means that these breast implants were (and are) a continuous drug (chemotherapy) delivery system. Don't you just love it??!!

The next MDL Hearings will be in Florida on April 27th with the Court hearing on April 28th. This will be held in Miami.

REMEMBER: YOUR ATTORNIES WORK FOR YOU!!!!! Remind them of this if they are not meeting your needs.

The schedule of events for the global settlement as it now stands is: April 1, 1994, Preliminary Fairness Hearing before Judge Pointer in Birmingham, AL. June 1, 1994, All opt-out forms will have to be postmarked by this date. Between June 1 and June 15th, the defendants can choose to opt-out. June 17, 1994, is the Final Fairness Hearing before Judge Pointer in Birmingham, AL. October 1, 1994, all disease compensation claims have to be postmarked by this date. If you have not opted-out of the class, you have to file by this time or be limited to recovery as a future claimant.

MENTOR: The defendants in the Mentor case have been allowed to reopen discovery. They are going to be taking depositions of current and former Mentor employees. This is probably not good news for women with Mentor implants, as it will take part of the already meager funds that have been allocated for this class action. Hopefully, the plaintiffs can also reopen discovery and make Mentor tell all about the profits it is making in its overseas and foreign country operations (selling breast implants). If you choose to pursue a private suit, you will not be allowed, as we currently understand it, to receive any $$ from the Mentor settlement. These funds will become part of the entire global settlement fund, not separate as formerly planned. This is another part of the global settlement that may harm many women. Remember, if you had Mentor silicone or double lumen implants, the gel was probably made by Dow Corning. You can opt out of the Global Settlement and pursue a claim against Dow Corning for damages.

If you wish more information and wish to be kept up on the latest developments in the global settlement, send a postcard with your name and address to: Office of Liaison Counsel, Box 830360, Birmingham, AL 35283-0360 or call (800) 960-6784.

IMPORTANT: In an Ohio case, a woman who refused to be intimidated by the manufacturer (Bristol-Meyers), refused to do an IME (Independent Medical Exam) with the defendant's psychiatrist unless she could tape record it. The judge ruled that it is legal to take a tape recorder into a defendant-ordered psychiatric evaluation. I spoke with her recently and she informed me that her case, which was scheduled for Court-Room TV on March 14th, has been rescheduled for early June. We applaud her courage and conviction.

SALINE IMPLANTS: We recently have been hearing that some plastic surgeons are having women sign the information sheet or package insert after implantation of the saline implants. We need to help inform women of the risks of saline implants before implantation. I have a package insert and the FDA sheet on saline. If you wish a copy of these, send a Self Addressed Stamped Envelope (SASE) to the address at the top of the newsletter requesting the saline package inserts. Except for the phenomenon of gel-bleed, there appears to be no difference in the amount of danger that saline implants impose over silicone implants. We must continue to get the word out as many MD's appear to be telling women that not only are saline implants safe, but that there is no silicone in them. There are still women who believe every word their surgeon tells them.

HEALTH INFORMATION: I have received some new information on Tamoxifen. Apparently it is much more toxic than we have ever known. Apparently it is also a cause of uterine cancer and may be a cause of liver cancer. Tamoxifen has ben shown to improve the odds of surviving about 13%. It may decrease the recurrence of breast cancer by as much as 40%. Tamoxifen also increases a woman's risk of having blood clots. Apparently there have also been some deaths caused by Tamoxifen. I have some information on this. If you wish this latest information, please send $1.00 and a Self Addressed Stamped Envelope (SASE).

MEDICAL: From Susan Boone of PALS: If you are seeing a new MD, please be considerate of his/her time. Write down your questions. Bring only lab results and pertinent records. Write down pertinent medical history, surgeries, allergies, diagnoses, problems, symptoms, and medications taken recently or currently. The way you present yourself can affect the response this doctor may have to other women with silicone problems. Please do not continually call or pester the doctor. There are already enough MD's who will not see women with implants. Let's not create another one. As Susan says, please use gentle erosion and not the bulldozer approach. Try not to exaggerate your problems or say that you are dying of silicone poisoning (or that you will die if you can't get your implants out, even if this may be true). Please don't tell a surgeon that your attorney told you to have your implants removed. Since many MD's are just learning about silicone problems, we need to be careful to not turn them off.

Lung pressure and elasticity of the muscles can be measured by RV by TLC, which we think stands for Reserve Volume by Tidal Lung Capacity. If you have problems breathing you can have this test or a PFT (Pulmonary Function Test).

If you are unable to find a lab to perform a 12 week fungal culture, ask your MD to request that your sterile tissue be sent to the University of Texas Health Sciences Center of San Antonio, 7703 Floyd Curl Drive, San Antonio, TX 78284-7750 Phone (210) 567-4131 FAX (210) 567-4076. An MD must fill out an order for this tissue to be sent to this or any other lab.

COSTOCHONDRITIS: Also called Tietze's Syndrome or costal chondritis. Costal = Pertaining to a rib. Costal cartilage is the cartilage that connects the end of a true rib with the sternum or the end of a rib with the costal cartilage above. Inflammation of the cartilage of one or more ribs, most commonly the second or third ribs. The inflammation may spread upward into the neck and in some cases as far as the cartilage of the ear. The condition is most common in young adults. The cause is unknown, but may follow a blow to the chest or an infection. In the case of women with breast implants, it may be caused by the inflammation in the chest area, bacterial, viral or fungal contamination of the chest area. It can be a part of generalized polyarthritis. The pain accompanying this disorder is usually intensified by actions that change the position of the ribs: bending, lying down, sneezing, coughing, and the like. The affected area of the chest is sensitive to the touch. Patients may believe that they are experiencing a heart attack. If simple pressure on the chest wall will reproduce the symptoms, then it is not a heart problem. This inflammatory disorder is usually of short duration. If treatment is required, it usually involves a short course of corticosteroid injection or anti-inflammatory drugs, coupled with reassurance of its benign nature. In breast implanted women, it would be very important for the implants and all scar tissue removed to relieve the cause of the chest inflammation. The course of this condition may well be prolonged in women who have had severe inflammation from breast implants.

PERIPHERAL NEUROPATHY: The peripheral nervous system is comprised of the motor nerves and the sensory nerves and connects the central nervous system with the various organs and muscles of the body. The peripheral nerves are like cables that allow the brain's commands to be conveyed to all parts of the body (motor nerves) and relay sensory information to the brain (sensory nerves). There are some diseases that affect only the peripheral nerves and not the brain or spinal cord. When only the peripheral nerves are involved, this is called peripheral neuropathy. If it involves a single nerve it is mononeuropathy or mononeuritis. If it affects many nerves and their terminal endings it is called polyneuropathy. Peripheral neuropathy is more a syndrome than a disease.

Polyneuropathy symptoms usually begin gradually. Hands and feet may become numb and the numbness is usually accompanied by a prickly pins-and-needles sensation called paresthesias. If untreated, loss of sensation may become increasingly severe and will spread to the rest of the arms and legs. It may also include the trunk of the body and the head. Muscles of the feet, ankles, fingers and hands weaken and may atrophy. The skin may become so sensitive that it is painful to the touch. The axon of the nerve or the myelin sheath may be the primary site of the injury. If the small myelinated fibers are affected it may cause a loss of temperature and pain sensation. If the large fibers are affected it may cause motor or proprioceptive defects (awareness of posture, movement, or changes in equilibrium and the knowledge of position, weight, and resistance of objects in relation to the body).

Peripheral neuropathy can be caused by many diseases. There is no specific medical or surgical treatment except to try to discover the underlying cause and treat that disorder. Some of the common causes are diabetes, alcoholism, and malnutrition. It may also result from prolonged exposure to various toxic chemicals such as arsenic, mercury, and lead (and any other toxins found in implants?). Knowing the types of nerve fibers affected may help find a method of treatment.

Multiple mononeuropathy usually is secondary to collagen-vascular disorders (polyarteris, lupus, scleroderma, sarcoidosis, and rheumatoid arthritis), metabolic diseases (diabetes), or infectious diseases (Lymes's, HIV). Microorganisms may cause mononeuropathy by direct invasion of the nerve. Autoimmune reactions may cause polyneuropathy. Toxic agents may cause polyneuropathy but generally cause a mononeuropathy. This includes heavy metal exposure (such as those in breast implants?) Nutritional deficiencies may cause polyneuropathy. A B-vitamin deficiency is often the cause. Malabsorption often occurs in women with breast implants, so this may be a primary cause of peripheral neuropathy.

Electromyography (EMG) and nerve conduction velocity (NCV) tests may help to confirm polyneuropathy. Muscle biopsies may sometimes provide specific diagnoses. Sural nerve biopsies are seldom helpful. Treatment is dependent on determining and treating the underlying cause. Symptoms may be treated. Peripheral nerves can recover, but this is slow.

CATS: CHILDREN: There are a number of studies currently underway regarding children and the problems they have. Dr. Patten has had about 100 children, Dr. Lewy has had many also. Call Jama Russano at (800) CATS 199 if you need information on children's problems. Some reported problems are abdominal pain, swallowing difficulties, chest pain and burning, asthma from reflux (stomach acid coming up into the mouth and throat), rotting teeth from reflux, ear problems, hypersensitivities, urethral stenosis and other problems including scleroderma.

ALTERNATIVE MEDICINE: We have recently heard that several persons are disparaging the results that a number of women have had from using hyperbaric oxygen chambers. Although they are not alternative medicine, I have covered them in this category because the usage of hyperbaric chambers for silicone toxicity is new. This type of medical treatment is commonly used for carbon monoxide and other toxic poisoning problems. A number of women have reported remarkable results from this type of therapy.

BOOKS: The Untold Truth by Patti Scher and Marion Koch, Silicone-Gate by Dr. Henry Jenny, and The Silicone Breast Implant Controversy by Dr. Frank Vasey and Josh Feldstein are all available through COSS. Please see listing of available materials on the last page.

PERSONAL COMMUNICATION: If you have had problems with endometriosis because of your silicone implants (or saline) or in conjunction with your implants, please contact L.B., 14180 Westchester Drive, Colorado Springs, Co 80921.

Silicone Scene's updated directory (second edition) for professionals will be available this summer for $50.00 from Silicone Scene, 1050 Cinnamon Lane, Corona, CA 91720. The self- help directory for consumers will also be updated and will be available for $20.00 from the same address. This directory contains a great deal of helpful information.

From Silicone Scene: Silicone Patients with MS-like syndrome invited to register. Doctors Bernard Patten and Britta Ostermeyer Shoaib have evaluated more than 1500 patients with breast implants. About 10% of these patients display signs and symptoms resembling multiple sclerosis, and many have been diagnosed as having multiple sclerosis. Symptoms in breast implant patients may differ from the classic MS syndrome. According to Britta, patients with MS-like syndrome show signs of disseminated central nervous system disease after implantation or injection of foreign material. They have no other condition that would adequately explain the damage to the CNS. Most of the patients have an abnormal MRI of the brain and abnormal analysis of the cerebrospinal fluid (spinal tap) or abnormal visual, auditory, or somatosensory evoked responses (electrical measurements of nerve pathways for vision, hearing, and sensation). In addition, most of these patients have auto- directed antibodies (ANA, etc.) or inflammatory actions on tissue biopsy. A very important finding is that all of these patients also have other atypical rheumatological signs and symptoms not normally seen in typical MS.

Dr. Shoaib is establishing a registry for women with silicone implants or injections who have developed the MS-like syndrome. If you have been diagnosed as having MS or think you may have MS- like syndrome, Dr. Shoaib invites you to write to her at the following address: Dr. Britta Ostermeyer Shoaib, 6550 Fannin, Suite 1801, Houston, TX 77030. If you are an MD with patients with this syndrome, Dr. Shoaib also invites you to register your patients anonymously. She stresses that the sole purpose of the registry is for research and that all contributions will be treated confidentially. Your participation in the registry will be greatly appreciated and may contribute greatly to the research about breast implants and disease.

Dr. Patten and Shoaib have presented papers on the MS-like syndrome to both the World Congress of Neurology and the Southern Medical Association. They are also planning to present a paper on the subject to the upcoming meeting of the American Academy of Neurology. During the past year, Dr. Shoaib has received two awards for physician in training by medical societies for MS-like syndrome research.

COMMENTARY: Have you seen the Opinion in the April issue of Playboy entitled "The Great Implant Lie"? Please write a letter to Dear Playboy, Playboy Magazine, 580 Lake Shore Drive, Chicago, IL 60611. Have your husband write a letter complaining about this irresponsible journalism.

A FRIENDLY REMINDER: As was stated in CTN some time ago, the majority of women who receive settlements spend the entire amount within one year and the rest almost always within 5 years. After all the money is gone, you still have your health concerns. If you spend your time and efforts to try to care for your health, the dividends will outlast any monetary amount you may receive from the manufacturers of your implants.

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

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