Acoustic Neuroma News World-Wide
(11/03) We have learned that the House Ear Institute in Los Angeles has been doing research on drug treatments for Acoustic Neuromas. This is from Dr. Slattery at the HEI: "We have put our resources into finding treatments for acoustic neuromas. Recently, we have been able to grow acoustic neuroma cells in culture, and are currently looking at drug therapy to try to treat these tumors. There has been some effect, which we find promising but research will need to be continued. It will be several years before we are ready to have a treatment other than surgery or radiation therapy."
(9/03) In August, a legal case was tried in Philadelphia regarding the issue of informed consent for AN treatments -- the first such case we know. The plaintiff was 41 years old at the time of her diagnosis with a 1cm AN. Her symptoms were very mild and her hearing was excellent; she wanted to preserve her excellent hearing. The defense, well-known and prominent surgeons, told her that radiosurgery was reserved for the elderly, and that she could expect (greater than 50% chance) to lose her hearing and sustain facial paralysis if she chose radiosurgery. With this "advice", she underwent surgery. The result: lost total hearing in affected ear, suffered new onset suboccipital headaches, severe long-term balance problems, and the post-op complication of meningitis.
At the trial, the surgeons claimed that they had informed the patient that radiosurgery was an option, but that they did not have a legal obligation to give her information on the advantages of radiosurgery, or to contrast the statistics associated with radiosurgery with what this patient could expect from traditional surgery. The plaintiff (and her lawyer) felt very differently about the surgeons' obligations, feeling that she deserved to be presented with a fair picture of her options. After a 6 day trial, the patient and her husband were awarded 1.5 million dollars. Read more about this case here.
(9/03) Transcranial magnetic stimulation (TMS) may eventually be a useful therapy for AN patients with tinnitus. A new study of people who had been troubled with tinnitus for years was presented in September 2003 at the annual meeting of the American Academy of Otolaryngology Head and Neck Surgery in Orlando. Researchers from the University of Regensburg in Germany used TMS to reduce tinnitus in more than half of the participants. Although the reduction was slight, it was enough to improve their quality of life. "They were able to sleep and concentrate much better than before the treatment," says study co-author Dr. Tobias Kleinjung. Six months later, the improvement had not diminished. Read more about it here.
(7/03) A study just published in the New England Journal of Medicine demonstrates that receiving a cochlear implant to restore hearing dramatically increases the risk of developing bacterial meningitis. The study was done on deaf children who received the device from 1997 to 2002; their meningitis rate was 30 times higher than in the general population (meningitis is a potentially fatal inflammation of the surface of the brain). This follows a an earlier warning from the U.S. Food and Drug Administration linking the implants with bacterial meningitis, producing 17 deaths worldwide among 91 patients who developed meningitis.
The study pointed to a "positioner" present in some models as causing much of the problem. The "positioner" pushes the electrode against the wall of the cochlea, the spiral-shaped organ that normally translates sounds into electrical impulses the brain can understand. Advanced Bionics Corporation, a cochlear implant manufacturer, withdrew two brands that contained a "positioner".
However, the study concluded that meningitis rates were still 16 times higher than expected even among brands that did not have a "positioner." For those who already have a cochlear implant, the risk of surgery to remove it might be greater than the risk of keeping the device. However, for those AN patients who are still searching for a solution to their one-sided hearing loss, this information is worth keeping in mind. Here is our page about Hearing Aids for AN patients.
(3/03) We have learned from some patients that Loma Linda is now only treating ANs that are no more than 2 cm. We expect that this is because of some bad outcomes they had with patients whose ANs were over 2cm, having corresponded with one such patient ourselves.
(2/03) The search has finally ended for a new director of the stereotactic radiosurgery deparmtent at John Hopkins, to replace Dr. Jeff Williams, who passed away in May 2002. Dr. Daniel Rigamonti has been chosen as the new Director of Stereotactic Radiosurgery at the Johns Hopkins Hospital. He will work along with Dr. Lawrence Kleinberg, Director of Stereotactic Radiosurgery (radiation oncology), and Dr. Moody Wharam (radiation oncology).
(1/03) An AN patient has won a ground-breaking case against his doctor, for the sum of $2 million. It is quite explosive, both because the jury seems to confirm that GK is better than surgery, if done early enough, and because they awarded a substantial amount against the doctor for not recommending that treatment. You can read more at http://www.irsa.org/ANCourtCase.pdf Note that the attorney in the case, April Strang-Kutay, is a contributor to our site, having written a page about physicians' legal obligations towards AN patients.
(11/02) It has been announced that the 16th national symposium of the Acoustic Neuroma Association will be held June 20-22, 2003 at the Sheraton Hotel in Anaheim, CA, organized by the House Ear Institute of Los Angeles, CA. In addition to panels and informational sessions, attendees will be able to sign up for "limited 10 minute individual consultations with a medical professional for facial, eye or pre-treatment evaluations." Also for the first time, "ANA is opening this meeting to the medical profession for invited papers on acoustic neuroma treatment, findings or research. Accepted papers will be presented in a workshop session at the symposium with time for presentation and a short question and answer period." If there are any AN patients who are also doctors, this may be a chance to get yourselves heard.
(10/02) On Saturday, Nov. 30, 2002, at 2:30 PM, Dr. Gil Lederman will talk in the UK about LATEST ACOUSTIC NEUROMA TREATMENT RESULTS. Dr. Lederman is the Director of Radiation Oncology at the Staten Island University Hospital, USA who has treated 500+ AN patients over the last 10 years. The venue is the splendid Double Cube Room of the Wilton House, near Salisbury, in Wiltshire, England. There will also be an opportunity for people to talk directly with Dr. Lederman over coffee. For further information contact Chris or Sheila Ottewell at 0117 9572724.
(10/02) New research proves that curcumin, a substance found in tumeric (a food spice), works to reduce brain inflammation and may help stop tumors from growing. The article is here.
(10/02) The ANA/NJ conference, held on October 5 in Princeton, NJ, was a big success. About 160 people attended, quite a few from NY and PA. Tapes have been made of 15 sessions; an order form for these tapes is available at http://www.hometown.aol.com/ananj3/ConfNotice.html .
(9/02) BAHA (Bone Anchored Hearing Aid), a revolutionary new system for helping people with single sided deafness, has received clearance from the FDA in Sept 2002. It is manufactured by Entific (http://www.entific.com). More information can be found on our Hearing Aids page.
(9/02) Brian Lloyd's "One Ear to the Ground" web site ( http://home.freeuk.net/beachcomber/oneear/) has been revamped this year, and is now an even better source for post-surgery patients who are having difficulties. Note: if go there and do not see titles such as "AN Info" along the top of the page, you need to reconfigure/change browsers.
(9/02) Brain Tumor Society 2002 National Symposium was held in Quincy, Massachusetts (near Boston) on September 20th - 21st.
(8/02) BBC 1 Wales has finally broadcast a TV Programme about an Acoustic Neuroma experience, that was 2 years in the making; we can only hope that it will get broader exposure in the future. According to AN patients who have seen it, "they have taken a serious and sympathetic view of the patient and her problems and produced an excellent, informative and entertaining programme." Myris Jones, the patient, has been deaf in one ear for many years. In 1999 she was diagnosed as having an AN in the good ear. Expecting her to become deaf, a friend who works in TV asked her to be the subject of a documentary charting her descent into total deafness; she reluctantly agreed. The first part of the programme covers her growing realization that total deafness would not be easy. The show covers her coming to a lecture in Manchester given by Gil Lederman. After this event, the producer was reported to remark "Looks like I'll have to change the objective and the title of this show now". The second part of the programme covers her weighing the evidence, deciding to go to SIUH and being treated by Gil Lederman. Finally we see her back at work and getting on with life as if nothing has happened.
(5/02) Dr. Williams of the John Hopkins University Hospital, one of FSR pioneers, passed away at the end of May, 2002. Here is a press release from JHU. Here is a quote from Dr. Daniele Rigamonti, Prof. of Neurological Surgery, at Hopkins:
I met Dr. Jeffery Williams in 1993 when we both began working at Hopkins and I have been discussing and sharing patients with him ever since. Our last interaction occurred on Thursday the 23 of May. His sudden death a couple of days later left everybody stunned. The Memorial service was a powerful reminder of how accomplished he was.
It will be difficult to "fill his shoes". However, this challenging task is not only our responsibility to his patients, but also a tribute to him and his vision. I am certain that the team he created will rise to the occasion. We will continue his work, more importantly we will keep alive his philosophy towards Stereotactic Radiosurgery, especially the FSR treatment protocols. Today, we are regrouping and making all the changes to provide the serve you all have become accustomed to expect
And here is a eulogy from one of his patients who attended the funeral:
When I was diagnosed with my AN I began the search for a doctor who had the rare combination of brilliance & compassion. After 5 consultations... I decided to go to Hopkins... Dr. Jeff Williams was the doctor who I had been searching for and I trusted my brain in his hands! Thoughtout my treatments, he was physically there checking every detail but never forgetting to reassure me with a gentle touch on my arm or to ask me before each beam, if I was okay with my face tightly fastened by a mask to the radiation table... I will miss emailing him & getting a quick response. I will miss refering newly diagnosed patients to him & telling them "they will be fine because he is the best & they will love his care". I will mourn the loss of a man who guided me thru a dark time in my life. But most of all I mourn for the hundreds of patients who will never have the benefit of his brilliant mind & his compassionate bedside manner.
Dr. Williams' work played a VERY important role in FSR research, by reproducing Dr. Lederman's success in a more scientifically acceptable way. It validated Lederman's claims for excellent FSR outcomes and proved their reproducibility -- a key step before a new treatment can be accepted. We at the AN Patient Archive hope Williams is not left unfinished, so FSR's road towards gaining acceptance in the medical community is not lengthened unnecessarily.
(4/02) ANA/NJ is planning a one day Tri-state Conference for patients from NJ/NY/PA, to be held in Princeton, NJ on October 5, 2002. The keynote speaker will be Dr. Gerald Brackmann, of the House Ear Clinic. Information and updates can be found on the web at www.hometown.aol.com/ananj3/ConfNotice.html
(3/02) A TV show featuring Dr. Gil Lederman will be broadcast in England in May 2002. They filmed his lecture in Manchester in September 2001, and just finished filming at SIUH.
(2/28/02) Dr. Mark Green, a character on a popular TV show "ER", underwent the gamma knife treatment for a recurrence of GBM (brain cancer), on the episode airing on Thursday Feb 28th. It was filmed at the San Diego GK Center. Dr. Ott of the SDGKC appeared in the GK scene for 2 seconds. Those who missed this show can watch for reruns.
The impression of treatment was that Dr. Greene left work and had GK like having a dentist appointment, just hop in the chair and we'll do this and you can return to work... My experience was at least a whole day devoted to treatment and a half day to pre-treatment procedures.
Many news stations carried locally produced stories about GK associated with this episode. Some AN patients and their radiosurgeons were interviewed for such stories.
(2/02) Dr. Gil Lederman visited Israel, where he gave three lectures about AN and FSR at hospitals in Tel-Aviv and Haifa. Rony Kess-El, the first Israeli AN patient to be treated by Dr. Lederman four years ago, helped to arrange the lectures, together with Dr. Elchanan Greenberg, head of ENT department of Carmel Hospital, Haifa. After one of the lectures, the "Israeli Lederman Fan Club" met at Dr. Greenberg's house. Interest in FSR in Israel is higher than ever, especially since FSR was featured in an article in Yedioth Achronot, the largest newspaper in Israel, in October 2001.
(2/02) The "medical diary series" on the DiscoveryHealth Channel has rerun an episode called "Sherry's story", about an AN patient. (The DiscoveryHealth Channel, http://health.discovery.com/, is not to be confused with the Discovery Channel -- only the former features this show). Sherry's story, filmed at House and Ear Clinic in LA, originally ran in July and October of 2001. It is a 'success' story; the patient experienced no after effects at all, except for temporary balance problems. Copies of this show are not for sale; however, it is expected that it will be regularly re-aired in the future.
I thought I'd summarize it for those wanting details of the program... Sherry, 54, presented her symptoms with balance concerns that reoccured about a year after the first time. They followed Sherry from the beginning of pre-op work to her follow up visit.
Dr. Day (he is no longer at HEI) and Dr. Friedman, from House Ear Clinic, were the doctors that used the Middle Fossa surgical approach to remove an 8mm left sided tumor. The day before her surgery she had a day of tests... A hearing test was administered and then reviewed with Dr. Friedman about her hearing level. She lost some high frequency, but overall the results prior were very good. On the day of her surgery, a recent patient (1 week past surgery) met her to encourage her through the surgery.
Dr. Day, the neurosurgeon, began by shaving a small patch of hair away in the shape of a question mark in her hair line in front of her ear. Electrodes were positioned to monitor the face and hearing nerve. After the incision, a rectangle shape is cut (bone flap) still by Dr. Day. Then the neurotologist, Dr. Friedman, drills through the temporal bone to expose the tumor. Then Dr. Day completes his work once the tumor is exposed. The tumor was removed bit by bit in three pieces. Sherry's was like animal fat or the non-sticky variety. They seal the space with stomach fat and then close. Sherry was able to keep her hearing and preserve her facial nerve. What a success story.
(June 2001) New Brainlab software has come out on the Varian treatment machine (for FSR). Here is a patient description of it:
What a wonderful and futuristic mechanical wizard. I was able to look through the lenses of the collimator and actually see the 3 diminensial frames that will adjust to the contour of the AN. When he clicked on one of the icon boxes, the neuroma changed shape because of the angle of entrance, and at the same time the table and "gantry" of the accelerator moved according to the command. The "projection" of the tumor for each angle is unique. This allows the "beam's eye view" for each arc of each beam, and specific contouring of the beam for each angle of attack. This enables the dosage to aim at the neuroma cells and not endanger the surrounding cells.
(7/01) Tapes of the lectures from the 2001 ANA National Symposium are available to anyone interested. They can be ordered from Cambridge Transcriptions, 675 Massachusetts Avenue, Cambridge, MA 02139, telephone (617)547-5690; email firstname.lastname@example.org. Please mention conference code ANA106. Prices are as follows (plus shipping and handling):
Per tape $10; Set of any 6 tapes $55; Set of any 12 tapes $110; Complete set (32 tapes) $250
(6/01) The latest FSR statistics from JHU statistics
These statistics corroborate the ones from SIUH, giving credence to the glowing praise that FSR has been receiving from most AN patients who opted for it. Please see our spreadsheet to compare both side by side, and our AN patient directory for stories from FSR patients.
(6/01) Dr. Mia MacCollin, noted MGH researcher, opposes radiosurgery for NF2 patients. On the other hand, Dr. Georg Noren, Director of the Gamma Knife Ctr at Rhode Island, endorses radiosurgery for NF2 patients. We've been told that they will be debating this issue as part of ALDACon 2001. This is a conference organized by ALDA (Association of Late Deafened Adults), held at the Hyatt Regency in Newport, Rhode Island October 31st - November 4th. Details should be available at: www.aldaboston.org; one can register for just the day of the debate, if desired.
(6/01) We have learned that in February 2001, the Discovery Health Channel filmed an AN surgery at the House Ear Clinic, for a show that is expected to air in August. (The Health Channel is separate from the regular Discovery Channel) We will post the date of this show as soon as we know what it is.
(4/01) Gil Lederman will be giving a talk in Manchester, England on Saturday, 29th September 2001. Dr. Lederman will also be using this event to announce his latest treatment result data. He would also like to use the occasion to meet as many UK SIUH patients as possible and to see how everyone is getting on. A similar event was held last year in Bristol. Please contact Chris (chrisottewell AT onetel.com) for more information.
(4/01) The ANA National Symposium is June 22-24, 2001 in Cincinnati Ohio. The URL for all the information pertaining to the Symposium is http://ANAUSA.org/sympindex.html
(3/01) Medical researchers at the Shea Ear Clinic in Memphis, TN have developed a new treatment injecting lidocaine, that can provide some relief to those suffering from intractable tinnitus. You can read more about it at http://www.entnet.org/pressroom/lidocaine.html
(2/01) The Radiation Oncology Department at the University of Wisconsin Hospital has finally taken the wraps off their new Tomotherapy machine. Clinical trials are to start soon. Tomography is a new option for AN patients considering radiation treatment, actually a highly sophisticated form of IMRT fractionated radiosurgery. It is said to be nearly twice as accurate as existing machines, due to its unique construction and computer software. More information can be found at http://www-madrad.radiology.wisc.edu/
(1/01) The latest FSR results from Dr. Lederman at SIUH have been officially submitted for presentation at an international radiosurgery meeting. According to that write-up:
They have analyzed the hearing preservation rates based upon four groups. We are not speaking only about any hearing, but rather maintained level of hearing, based upon baseline hearing tests performed at the time of treatment.(12/00) The Acoustic Neuroma Archive is now affiliated with the Brain Trust (http://www.braintrust.org), as contents provider on Acoustic Neuromas and related benign skull base tumors.
(a) 500 rad times 4 fractions on consecutive days, with 24 months mean follow-up, median tumor size 1.0cm;
(b) 500 rad times 4 fractions on alternate or more days, with 38 months mean follow-up, median tumor size 1.5cm;
(c) 400 rad times 5 fractions on consecutive days, with 26 months mean follow-up and, median tumor size 2.55cm;
(d) 400 rad times 5 fractions on alternate or more days, with mean follow-up of 41 months, median tumor size 2.6cm.
Those patients who received 400 rad times 5 on alternate or more days had the best hearing preservation rate. Ninety-four percent (94%) of these patients maintained or improved the hearing. When 500 rad times 4 was given on alternate or more days, 82% maintained hearing. In those patients being treated on consecutive days with 400 rad times 5, 75% maintained hearing. While in the group receiving 500 rad times 4 on consecutive days, 69% maintained hearing.
Hearing improvement also is an important issue. When 500 rad times 4 is given on consecutive days 6% had improvement; 500 rad times 4 on alternative days yields 9% improved hearing; 400 rad times 5 on consecutive days gives 25% improvement; 400 rad times 5 on alternative days had 20% hearing improvement.
99% of patients have had effective control of the tumor, meaning no further treatment for the tumor was needed or recommended. 99+% of patients have maintained facial and trigeminal nerve function, meaning the face moves normally and has normal sensation.
(12/00) Patients can get help with their insurance or job discrimination problems from the non-profit Patient Advocate Foundation in Newport News, VA. URL: www.patientadvocate.org, tel. 800-532-5274. They also have an online Guide to the Appeals Process.
(10/00) A new device has been approved by the FDA that will be able to restore hearing for patients who are deaf as a result of AN surgery. The device, called the Nucleus 24 Multichannel Auditory Brainstem Implant (ABI) is the first hearing-assisting device approved for implanting in the brainstem:
Removal of tumors often requires severing the auditory nerves. With the nerves cut, electrical signals from the ear cannot reach the brain, which causes deafness. The ABI device is implanted in the brain where it electrically stimulates an area that normally receives signals from the ear. A pocket-sized speech processor, worn by the patient, picks up sounds, changes them to electrical pulses and relays the pulses to the device implanted in the brain.
So far it has been approved for NF2 patients, but we don't see why it cannot be used for other AN patients whose hearing nerve is severed during surgery. The ABI is made by the Cochlear Corp. of Englewood, Colo (http://www.cochlear.com). A spokesman said the ABI now is available at about 10 clinics nationally and will cost about $30,000. (Perhaps the cost will not justify its use except in those cases when the patient was already deaf in the other ear).
(9/00) The next meeting of the Seattle AN Group (SANG) will be on Saturday, October 21. The location (still being confirmed) is the conference room at the Tumor Institute of Swedish Hospital. The expected time will be from 1-3 or 4 in the afternoon. The guest speaker is Dr. Sandra Vermeulen, radiation oncologist.
(8/00) A recent article on BBC News (http://www.bbc.co.uk/tw/stories/medicine/9905surg.shtml) describes a new tool for objectively measuring the skill of surgeons. Though its first application is for training, we hope that there will be others. This is the first time that there is a possibilty of an objective measure of surgeon's manual dexterity, and thus a possible means of comparison which eliminates the variation in results caused by the variation in patients.
(8/00) We have been contacted by the company that supplies medical contents to the Medical web sites featured in our Hall of Shame. They've promised to be updating their AN contents very soon; we look forward to it.
(8/00) Harborview Hospital in Seattle has set up a new GK facility. Their equipment will consist of Gamma Knife unit "C" (or Gamma Knife 7), that has an automatic positioning system, using live MRI imaging for real time targeting. This is a new unit from Elekta, and there are currently only 2 of the type in the U.S. Elekta claims that this is significantly improved over other GK units, that exposure to healthy tissue is minimized. However, some GK specialists feel that the field is too limited with the new unit. Other units available from Electa are "U" (the one that looks like a football helmet) and "B" (which looks like a wringer washing machine).
(7/00) Two events are coming up for AN patients and their families living in England, especially those in the south :
1. At 3pm on Saturday, July 15, in Frenchay Hospital (Post Graduate Centre, Bristol), Gil Lederman will present a lecture on his treatment of ANs using FSR. Frenchay Hospital is a leading AN treatment Centre in the UK. Everyone with an interest in ANs and their treatment is welcome. The local BANA Branch who have organised the event are looking forward to a lively debate!
2. The same evening Chris Ottewell is organising a "Reunion Dinner" for former SIUH AN Patients, with Gil Lederman as the guest of honour. All UK based SIUH patients are urged to contact Chris (email@example.com) as soon as possible! Chris can also provide directions to Frenchay Hospital if required.
(7/00) The next meeting of the New Hampshire & Vermont ANA support group is scheduled for Saturday, July 29, 1:00 p.m. at the Dartmouth Hitchcock Hospital, Lebanon, NH. Dr. Glenn Johnson will speak on balance problems and treatment as related to Acoustic Neuromas. Anyone is welcome (even from other states); for more info, contact Carolyn (mcquistoncmp@YAHOO.COM).
(6/00) On June 10, 2000, BANA (British ANA) had its Annual General Meeting. Here are exceprts from a patient's report of this event:
The first talk was by Christer Lindquist - He is a world leading GK surgeon and micro-surgeon with a unique view of the world, 25 years with Karolinska, Sweden, where he performed all the micro-surgeries in the last 5 years of his time there, as well as GK. He is now Director of the Gamma Knife Centre at the Cromwell Hospital in London, one of only 3 GK centres in England...
He showed a screenshot slide of the AN Archive Do Not Panic! page and said - "I refer all my patients to this web site - It is the best place in the world to get full and unbiased advice - This is a very important message - (do not panic) - as it's what most newly diagnosed patients do" He went on to commend and discuss all the good advice on that page...
He also showed a screenshot of the Myths page and said "All of these are myths which we must do away with". He then discussed many of them and explained why they are myths and the harm people are doing to patient well being by perpetuating them...
Here are some more excerpts from the same letter, on Dr. Lindquist's discussion of Gamma Knife treatments:
GK is his preferred option for tumours under 2.5 cm, [and] surgery for those over 4 cm but those in between always need more assessment on their individual merits - However, he said he always wants his patients to make their own decisions which he impliments as long as he feels it isn't dangerous...
Micro-surgery after GK (in his experience) wasn't any harder than a second surgical procedure after surgical failure...
He is the only person I know of who has done repeat GK... He also gave a figure of "more than 10,000" for the total number of AN's now treated by GK worldwide since 1969.
(6/00) Two months ago, Emory U. Hospital in Atlanta, GA, started offering FSR, using a LINAC System with IMRT (micro-multileaf collimator, a.k.a. Peacock). The radiation oncologist at Emory who does Acoustic Neuromas is Ian Crocker, MD. He gives 54 gray total dosage, 1.8 gray per day over 30 fractions/days. The treatment is supposedly accurate to 0.3 mm. Until now, Emory used to do single-shot stereotactic radiation.
(6/00) ANA/NJ now has an on-line newsletter: http://hometown.aol.com/ananj2/newsletter.html
(6/00) The next meeting of the Seattle AN Group is Sat. June 24 from 1:00 to 4:00 p.m. Location:
B Floor Conference Room #1, Swedish Hospital, 1225 Madison St., Seattle Washington
This meeting will be sharing of information and support, and possibly some videotapes related to acoustic neuroma. Everyone is invited.
(5/00) The Acoustic Neuroma Archive now has an AN Hall of Shame, featuring sites, studies, publications, etc. that are doing a disservice to AN patients.
(5/00) Notice to AN patients in Canada: Out of the G-7 countries, Canada alone does not have any GK units anywhere in the country for its citizens. Plans to purchase a GK unit for Ontario have been recently cancelled. Their rationale is that there are very few patients asking for this service. Part of the reason is that the medical community is still not giving patients the option of Gamma Knife. We urge Canadian AN patients to contact their local MPP to increase the the pressure for a Canadian site.
(5/00) At least in some cases, Blue Cross/Blue Shield started accepting FSR as a legitimate AN treatment, and covering treatment costs "anywhere in the world" (travel expenses not covered). See Don Hesser's story.
(4/00) The first annual strategic planning retreat of the AN Archive Board was held April 13-14 in Hyannis, Cape Cod. It was very productive yet relaxing. We are more certain than ever that the Archive plays a vital role in the AN patient community, by empowering newly diagnosed patients. We're pleased with the recognition the Archive gained over the past year, and we look forward to continued progress in fulfilling our mission:
Whilst we will strive to establish ourselves as a recognized and a respected member of the worldwide AN community, we'll re-emphasize the AN archive as a patient based organization not affiliated with any modality.
(4/00) Dr. Georg Noren of the New England GK Center (Rhode Island Hospital, Providence, RI., tel. 404-444-4257) has started offering a new fractionated GK treatment to selected patients. So far, six patients have been treated with FGK. The first one was Victoria Meyerink, whose story is here. [See a related news item from 4/99].
(4/00) In the summer of 2000, For anyone who may be in Great Britain, Belgium and Holland in the summer of 2000, Rony Kess-El (an Israeli AN patient) and his Youth Orchestra will be touring and performing there. They hope that their concerts will raise funds for AN organizations from those countries. If anyone is interested in helping Rony with this beautiful effort, please contact him: <firstname.lastname@example.org>
(3/00) NJ is about to have its first Gamma Knife site, at JFK Medical Center in Edison. The person (neuro-oncologist) to contact is Dr Joseph Landolfi, 732-321-7950. As of late February, they were just expecting a team from Sweden to arrive, to provide training on the use the instrument.
(2/00) A new ANA Support Group is starting in Northern New England. The 1st meeting will be held in Lancaster, NH, March 11 at the North Country Resource Center. For questions, please contact Carolyn at <email@example.com>
(1/00) The latest issue of ENT NEWS has a review of the AN Archive, among other sites. Here is what they write; keep in mind that the intended audience is ENTs:
Finally for a site that is guaranteed to make surgeons boil, visit the Acoustic Neuroma Archive at http://www.anarchive.org Its blindingly obvious glaring fault (pardon the tautology) is that the information proffered is overwhelmingly anti-surgical in tone. This stance is unhelpful to patient care and benefits no one. When two elephants fight it is the grass that ultimately suffers. Despite this major quibble, the breadth of this website coverage makes it worth bookmarking if only to niggle your skull base colleagues with.
Feel free to send your comments about this review to us, and let us know if they can be published.
(1/00) The GK center at the University of Virginia has released a report of their AN outcomes for the 1989-99 time period.
(1/00) The next Seattle Acoustic Neuroma Group meeting is going to be on Saturday, February 26, from 1-4 PM in downtown Seattle; exact location is still being set up and will be announced later. "We will have annual elections and business. Our guest will be Dr. Huang, a neurotologist specializing in acoustic neuroma. She is a partner of Dr. Mangham of the Seattle Ear Clinic."
(1/00) The next meeting of the NJ Chapter of ANA will be Feb 19, 1:30 PM, at the Newark Airport Marriot, located on the premises of the Newark Airport. There will be a panel presentation for "Recurrence of Acoustic Neuroma." The five panel members are in association with the newly established Brain Tumor Center of New Jersey located at Overlook Hospital in Summit, NJ. This special meeting, open to all, is in conjunction with the meeting in Newark of the national Executive Board of ANA. For details call 609-683-4650.
(1/00) Patients from Northern New England no longer need to go to Rhode Island for Gamma Knife; it is now available at Mass. General Hospital in Boston!
(12/99) We have just learned that an informational site for brain tumors, http://www.virtualtrials.com/ has a section with videos! Among others, there is a video about Gamma Knife radiosurgery, and also a video of a lecture by Dr. Lederman from 9-26-99. When you go to www.virtualtrials.com , please click on "interact" and then "video clips" (first make sure that RealPlayer is installed)
(12/99) For anyone who may be in Great Britain in summer 2000, Rony (see his story here)and his Youth Orchestra will be visiting and hope to do a fund raising concert for BANA - the British ANA. Buy tickets even if you can't come please!
(11/99) The Third International Conference on Acoustic Neuroma and CPA Tumours took place in Rome in June 1999. It attracted 700 delegates from all over the world. The main debates were on the challenge of hearing preservation in AN surgery and on advances in 3D imaging and volumetric measurements, as they apply to surgery. The patients were not represented. The next conference will be 13 - 17 July 2003 in Cambridge UK; we wonder if we can get a patients session included? See the 9/99 issue of ENT NEWS for more details.
(11/99) We have just learned that some versions of the software used with the Gamma Knife equipment have been recalled due to errors (bugs). This software, called "Leksell GammaPlan", is intended to be used for planning the dosimetry of treatments; as a result of these bugs, some patients could receive a dose higher or lower than prescribed. We urge anyone considering GK treatment to ask specifically whether the version of software on the GK machines they will be treated with is not listed in the recall. See recall details here.
(10/99) Scientists in London, England, are developing a pioneering technique
for reconnecting severed nerves, which would end the need for facial nerve grafts
for AN surgery patients. They have found a way to persuade the severed ends of
damaged nerves to grow through a special tube implanted to bridge the gap. The
inside of this tiny polymer tube is coated with Schwann cells, which release proteins that
encourage nerve growth. These cells would be grown from the patient's own, taken from a
tiny sample of nerve, to avoid rejection problems. Once the nerve fibres have grown and
reconnected, the tubing simply dissolves away.
Dr Georgio Terenghi, head of the Nerve Regeneration Group at Royal Free Hospital, and his team have already shown that full nerve function could be restored in rats. They hope to begin implants into patients within two years. If successful, treatment could be widely available in five years. This could have a profound effect on those AN patients who are otherwise left without full use of their facial muscles.
(10/99) There will be a Skull Base Surgery Symposium on Nov 4-6, 1999 in New York, at Cedars Sinai Medical Center, Harvey Morse Conference Auditorium. International surgeons and guests will be speaking on Skull Base surgery, including surgical approaches to Acoustic Neuroma Tumors. For more information, please call 310-423-2937.
(10/99) The ANA has made available audiotapes of the various workshops from their June 1999 biennial symposium. The radiosurgery tape, by Dr. David W. Andrews, has received some rave reviews:
Someone needs to figure a way to make sure that the people who need the information on that tape gets it. Every AN patient who is considering anything, I mean any type of operating procedure, needs to hear this tape. It gets rid of one of the biggest rumors around: surgery after radiation is next to impossible; it would be inoperable if it was radiated and come back... My wife decided against radiosurgery because of that concern... we are paying for it everyday.
(9/99) The latest ANA newsletter (Sep. 99) has Part III of the 1998 ANA Member Survey, focusing on the post-treatment quality of life, covering surgical patients only. The results are very discouraging indeed. It is also very puzzling why the radiosurgical patients were not covered separately, as they were for parts I and II of the Member Survey report.
(9/99) A great new site for latest AN research news is the Johns Hopkins "What's New" site. Dr. Williams of JHU has also started keeping a database of AN medical cases, to be query-able via the web.
(8/99) The NIH had publicly admitted that the AN consensus statement is outdated. You can read our earlier write-up about this statement, and see it on-line for yourself. We talked to an NIH official about it today, and he said that no organization should be using this statement any longer as a basis for its literature or its policies. In their eyes, this would be "illogical". We are pursuing this development further, and hope to shed more light soon.
(8/99) Head for Health, ANA/NY's first regional conference, will be held Saturday, August 14, 1999 at Hofstra University in Hempstead NY (Long Island). There will be a panel and four workshop sessions, with 4-6 concurrent workshops at each session -- and all are different! Many topics for pre- and post-treatment patients, family members and health professionals will be addressed. The Archive editor will be there too, presenting a workshop on "Computer as a Patient Tool". $35 full day registration includes all workshops and lunch; here is the preliminary program.
(7/99) Drs. Joseph L Demer and Jun-Ru Tian at UCLA are looking for people who have undergone surgical labyrinthectomy or vestibular neurectomy for ANs, to participate in a study of balance and eye movements. They are not trying to find treatment, but to obtain information that may help dizzy people in general. There are 1-3 test sessions, about one hour each; subjects receive $30-40 per session. If interested, please contact research coordinator Nicolasa De Salles at (310) 206-6354 or e-mail firstname.lastname@example.org . The laboratory web site is at http://oculus.jsei.ucla.edu
(7/99) The latest (July 1999) issue of the British Journal ENT News contains letters from an AN patient Chris Ottewell and from a leading FSR provider Dr. Gil Lederman. They are in reply to recent correspondance following an article written by Chris Grey, an English Actor who had to retire after AN surgery (with no pension from a profession such as his), and more recently was the BANA Publicity Officer.
(6/99) A new book out on Vestibular Therapy just came out, which might be of interest to any ANers with fatigue or dizziness problems post-treatment.
(5/99) The Cleveland Clinic has adopted a high-tech Cyberknife system for delivering LINAC radiosurgery accurately without the need for either custom-made or attached head frames. For more info contact Dr. Richard Crownover at the Cleveland Clinic 9500 Euclid Ave. Cleveland, Ohio 44195 or 216-444-1925.
(5/99) On August 14, 1999, ANA/NY will host a full-day Acoustic Neuroma conference at Hofstra University in New York City. Among the speakers will be Dr. Kelman Post of Mount Sinai Hospital and Dr. Gil Lederman of Staten Island University Hostpital, both well-known AN specialists. More than 100 patients are expected to attend.
(4/99) On April 4, 1999, CBS 60 Minutes reported on the testing of SU5416, an anti-angiogenesis agent, by Dr. Rosen at UCLA Cancer Center. This was a Phase I Clinical/Human test, conducted on 62 terminal cancer patients with a variety of tumors; one was a brain tumor. 17 patients showed tumor shrinkage or no growth; half died in the course of treatment. It is possible that endostatin and angiostatin are commencing trials in the fall with non-terminal patients. Dr. Judah Folkman at the Children's Hospital in Boston, a pioneer in drug cancer therapies, would be the one to watch. Hopefully the effect he demonstrated for mice can be duplicated in human testing, to stop and/or reduce the blood vessels production which feeds the tumors, both malignant and non-malignant. We will know by the end of the year how these Phase I trials are going.
(4/99) Dr. Noren of RI, the leading GK practitioner in the country, is about to start offering fractionated GK treatments, for at least some of his AN patients. It will be a series of either 4 or 5 treatments, done either 12 or 24 hours apart -- the details are not yet finalized. It will be in-hospital since the fixed headpiece will have to be worn for the duration. This is a totally new protocol, it is the first time that Gamma Knife has been fractionated, and it just may turn out to be the best FSR protocol around, combining the precision of the Gamma Knife with the benefits of fractionation, by the person who can get it right.
(4/99) Some wait-and-watch ANers in the San Francisco area have formed a group to share information and support. This group, not affiliated with the ANA, hopes to meet on a monthly basis. Anyone living in the San Francisco Bay Area who would like to join is welcome to e-mail Joanne Louie <Jmlouie AT aol.com>.
(4/99) On Mar. 26, 1999, there was a nationwide ENT physician conference at the Meir Hospital in Kfar Saba, Israel; Dr. Gil Lederman was an invited speaker who will talk for about 20 minutes on FSR. Also, a transcript of Dr. Lederman's 3/98 interview with BBC in England is finally available, you can find it in the BANA Archive.
(2/99) Someday, ANs may be treated by drugs
(by a patient)
I read reports last week that the FDA in conjunction with the National Cancer Institute have completed animal trials on angiostatin and endostatin which have proved to dissolve large tumors in mice, and they are beginning human trials in the next month. These products are two protiens which are extremely effective in preventing the growth of blood vessels that tumors need to obtain nutrients - a concept known as anti-angiogenisis. By the end of the year there may be some information regarding their on the growth of tumors. I am not sure how this will relate to benign tumors such as ANs, but even if they work on malignant tumors the results of the trials will be phenomenal. We, AN patients who have not been treated as yet, can only hope that if these tumor-shrinking drugs prove to work with maliganant tumors that they may also work for ANs.
(1/99) 60 minutes to cover ANs!
We have heard from a British AN patient who has just been treated at SIUH by Dr. Lederman. His treatment was filmed by CBS for the 60 Minutes program, and he was also interviewed by them. This program, which has not yet finished filming, also features the treatment of an AN patient from Georgia. It seems that the woman has two tumors. The first is an AN and has now been treated by the usual protocol. The second is something different, with treatment spread over 5 weeks.
The woman has a female relative (sister?) who also had an AN, treated by a surgeon in Georgia. Three weeks after the surgery she was told that she needs further operations to complete the treatment. She died very shortly afterwards. We do not know what angle 60 Minutes is adopting on this story, but any further leads will be appreciated.
On the medical front: doctors and researchers
Upcoming Conferences and Symposia
News in AN press
New FSR sites
New GK sites
New Web sites
Last Edited: Wednesday, November 19, 2003