Dear Editor:
letters from Acoustic Neuroma Patient Archive visitors

Were we able to help you? Did you find what you were looking for? Do you have suggestions to make us ever better?

If you have any comments or suggestions regarding this site, please write to the AN Archive's editor, at ANarchive@gmail.com Please let us know if you do NOT wish your letter published, or if you want your name or your email address withheld.

If you want to hear from other patients, we recommend you post to the ANA guestbook instead.  
Note: we are not affiliated with the ANA (Acoustic Neuroma Association) in any way.

All e-mail addresses are in brackets;  to protect from "web harvesters", the @ sign in the addresses is replaced by " AT ",   please change it back!


I really want to express appreciation for the Archives. It saved me from rushing into surgery a few weeks after diagnosis. You are to be congratulated on such a wonderful service to AN patients for the excellent job you have done in organizing all of that information into a meaningful format. It's been very useful and I wanted you to know how much I appreciate it. 

Thanks, 

Donna Robertson

Our reply: we put a lot of effort into organizing the information so it is all easy to find, put we always worry that there is so much that some may fail to find what they are looking for.  We would appreciate any suggestions on how to improve our site organization further. 


When I was diagnosed with an AN, I was handed a booklet authored by the ANA containing everything I would need to know about acoustic neuromas... I decided to schedule surgery as soon as possible. When my brother, the general surgeon, learned of my upcoming surgery, he insisted that radiation is the better method of treatment. I was leery but had a consultation with a radiation oncologist... I decided to wait and watch at the recommendation of the otologist and the radiation oncologist.

Soon thereafter, I was laid off and found time to adequately research my condition. My internet search did bring me to the AN Patient Archive site, and I found it endlessly fascinating. Reading the actual stories of those who had gone before was a huge relief. There were not enough hours in the day to immerse myself adequately in this newfound source of infomation. I found it odd that the ANA had not directed me to this website with its wealth of interactive links.

I started connecting with real patients after reading their stories. I saw drawings and photographs and read letters to doctors and insurance companies. I finally felt as though my care was under my control, not the control of the neurosurgery department at the local hospital. I am extremely grateful.

Nancy McDonald-McComas  <McComas AT rcn.com>  (25 June 2002)

Our reply: We are glad that our site has served its purpose for you, and we believe that the ANA is doing their members a disfavor by not informing them of the AN Patient Archive.  Perhaps if enough patients wrote to them to let them know, this will change. The address can be found on their web site.


I was diagnosed with an Acoustic Neuroma in January of 1999. My first inclination was panic (panicking is unnecessary and a waste of energy). My second and more rewarding activity was research. After much misinformation, I found the Acoustic Neuroma Archives and have chosen the option to "wait and see". I was angered by doctor's opinions being stated as fact and being referred to the Acoustic Neuroma Association's web site, which at that time believed in knife surgery "now rather than later"! So I made a booklet for my doctor to educate him.

I have acquired many friends from around the world since the Acoustic Neuroma Archives have made available my booklet through their web site. I think it is necessary only to mention two. One person in the UK, already prepped for surgery, developed a headache and fever.  He was sent home and told to return for surgery when symptoms diminished. The wife read my booklet and contacted me. Within weeks, he was in Staten Island, NY with Dr. Lederman performing radiosurgery. A gentleman in Brazil just asked and received permission to translate my booklet into Portuguese to distribute to medical professionals in that country. His mother recently had "knife" surgery and the poor soul had almost every side effect possible related to surgery. He read my booklet only after the surgery.

This is to only mention two of many. Everything in my booklet came from the Acoustic Neuroma Archives. I only arranged the information to get my doctor's immediate attention, which I most rewardingly did.

Kenneth Carpenter  <kvc2 AT cox.net>  (29 Oct 2001)

Our reply: the more we share with others in the AN patient community, the less suffering we as a community we will experience.  Thank you for what you have been doing!  Please encourage the Brazilian gentleman to contribute his translation to us, so we can publish it as part of our Portuguese web site.


[The author of the next letter had originally written to the ANA, saying that their web site was so helpful to her research two years earlier. We contacted her after seeing the ANA newsletter, to see if perhaps she had the AN Archive in mind instead.]

I believe you are correct! Now that I have seen your site I definitely remember it. At the time I did my research I did not have my own computer. It was a confusing time. Thank you for reminding me about your site! I see a lot of people ... listed there whom I look forward to corresponding with.

I have given out your web site several times recently, it is an awesome resource. Once again, thank you for the outstanding service you provide to fellow AN friends!

Sincerely,

Susan Frederick <Sfred763 AT aol.com> (6 Oct. 2001)

Our reply: you are not the only one to have gotten confused. With the latest release of the AN Archive, we have changed the full name of our site to the Acoustic Neuroma Patient Archive, to stress the fact that it is both for and by patients.  We hope this will decrease the confusion vis-a-vis other Acoustic Neuroma sites. If you have other suggestions how to make sure patients who benefit from our site do not give credit for it elsewhere, we would appreciate them.


The Internet is such a vast place to find information at times it is overwhelming to say the least. When one finds out they have an AN the last thing they want to do is spend days searching through thousands of sites looking for information. Your site has eliminated that anxiety and put it all together. I know your site has made my research much simpler and faster as well as comprehensive. Therefore, we could concentrate on treatment options rather than research. Sandy (my wife) and I both thank you very much.

To make a serious decision you need serious information. This is what you want to give to anyone looking to make a major decision as to the treatment of an AN. Making a serious decision with minimum information would be a grievous error. I think your site is set up perfectly. I would not change anything.

The beauty of your site is that one can get as little or as much information as they want. One can get just about any information regarding acoustic neuromas. If it isn't on your site there are links to other sites where it can be found. One can find the doctors, medical centers, equipment, treatment options and patients stories to mention a few.

Unfortunately there will always be those that look at the helping hand as a threat.   Anytime you put yourself in a position of helping others you also put yourself in a position for abuse. The benefits of your site far, far outweigh any negative impute you may  receive. Please sleep well tonight knowing that you are doing a great service to a great many people even if a few don't appreciate it.

Bob Gilbert (6 Jun 2001)

Our reply: Thank you for your letter. We do not believe we are as comprehensive as can be. With every new release of the AN we strive to get closer to that goal, such as the new page for NF2 AN patients that we have just added.


Wonderful site and great resource for patients and clinicians alike! I wanted to know if it would be possible to add your site as a link to our site in London?

I also see that we are are not as of yet present on your listing of UK centres. The London Radiosurgical Centre was opened in association with St Bartholomew's and The Royal London Hospitals in 1999... We have 5 treating Neurosurgeons, 3 Clinical oncologists and a Neuroradiologist treating patients at the Centre. Dr Nick Plowman has been working with radiosurgery (including the LINAC) for over 10 years and has been working with us since the beginning. One of our Neurosurgeons, Mr Hamid Huneidi is currently at our sister unit (The San Diego Gamma Knife Centre, at Scripps Hospital) this week getting advanced training for GK. He is particulary interested in AN and skull based.

Best regards!

Julee Rodgers, Gamma knife manager, London Radiosurgical Centre (6 Jun 2001)

Our reply:  We really appreciate your offer to provide a link to our site. We always welcome an opportunity to make our resources accessible to as many AN patients as possible. We have also added the information about your center to our Radiosurgeon directory (http://www.ANarchive.org/radiosurgeons.htm).


My wife awoke the other morning to no hearing in one ear and a strange "noise" in the ear; her face was also numb. That day, we went to our doctor and were referred to an ENT... I am now dressed to take her to a MRI center for a scan. This has all happened so incredibly fast. It is wonderful to be able to have some knowledge about this problem, knowledge I didn't have 24 hours ago. I am incredibly frightened about this, my beautiful wife is 32, plays piano and guitar, raises kids, and is a professional also.

I hope the MRI will be negative for AN but I know if it shows AN to be present, I have a little information about the options for treatment and will not be pressured to one technique or another. Thank you for being here, with a wealth of information,

Jonathan Gilbert (24 Apr 2001)

Our reply: The Acoustic Neuroma Archive is a completely patient-based group, with no support from the medical establishment. We are here to help each other in the times when AN information is so urgently needed. Please consider helping us, so we can continue being there for you and for others.


When I was diagnosed of my AN a few weeks ago, the only option given was mid-fossa approach. Immediately after the diagnosis I needed to go on a business trip for 2 weeks -- imagine the depression I had to go through in those lonely hotel room... Then I discovered radio surgery. Amitabha (It's a Buddhist chant -- I am Chinese, you see.) It is quite depressing to see so few Asian patients in your directory, and all of them may have thought they do NOT have an alternative.

I have the same sentiments of the Japanese Gentleman who wrote last year. The AN Archive has been a saviour for me. Thanks a zillion.

TY Man, Taiwan (4 Apr 2001)

Our reply: We agree that it would be wonderful if our information was available in Chinese for the AN patients in Asia. We hope to be able to provide a Chinese version of some of the Archive pages sometime this year.


Your site is fantastic and stands out head and shoulders above the others. I have known about my AN for 18 months now. It's small (0.5cm) and luckily doesn't bother me much so I am 'waiting'. I am in no rush to have treatment.

I am Scottish, but lived in Houston when diagnosed.  Medical care in the US and UK is really different and very largely based on the financial drivers and the legal system. I think the key is that in the US, MRI machines and radiation units are much more common, and in the UK the high technology part has developed slowly. The other thing they have to do in the US, because of potential litigation, is lots of tests.

The great thing about the US is that they MRI almost routinely and so I am sure they are picking up increasing numbers of small AN's and other similar disorders.This is not the case in the UK where ANs seem to be found once the damage is done and things are getting dangerous. This all seems so unnecessary, but reality. In the UK we really need to drag our health system into the 21st century.

Keep up your great work with the site. You have no idea how much it has helped me personally.

Peter Jackson, United Kingdom (16 Dec 2000)


Hello from Australia,

Thank you for a VERY informative site. My wife was shown a MRI about a fortnight ago which showed a 27mm x 22mm x 16mm tumour and we were immediately referred to a surgeon. As I am a keen internet freak I began to search for the Vestibular Schwnoma and found your site. It is wonderful how much more in control of your life you feel when you have good unbiassed information.

As expected the surgeon told us that the internet was a dangerous pastime for non-professionals who could not sort out the truth from the lies and advised that my wife should have surgery soon. I did however, by insisting, get him to refer us to a doctor who uses FSR at a private hospital in Brisbane. When we went to see him he told us that they had only done 6 in the 2 years that the machine had been installed mainly because few patents know about alternatives to surgery. He said that the 6 had been a success and they had done one almost exactly the size of my wife's as their first one. He did say that they would be quite happy to treat her, but of course explained the risks with the treatment. I asked him to refer us to Dr Robert Smee at the Prince of Wales hospital in Sydney as he has had the most experience with this type of tumour in Australia having done them for 10 years now.

We will be flying down there on 14th Dec 2000 for a consultation and to try to get an opinion from him as to how he would approach the treatment (number of fractions, total dosage, etc.)  So thank you once again for your very informative site. It certainly makes getting bad news a lot more tolerable when you know that there are alternatives to surgery, and you have the information to be able to quiz the doctor to get what you need for a decision. 

John & Del Barwick, Australia (12/10/00)
<bowyang AT aapt.net.au>

Our reply: Of all the recent technological advances related to medicine, the internet will probably have the most far-reaching implications. Information empowers patients, and the internet makes this information accessible world-wide. We are glad to be able to capitalize on this technological development, to bring help to AN patients everywhere. 


I have just found out that I have a small L acoustic neuroma... The surgeon gave me the ANA booklet "A Basic Overview" and said I could let him know which [treatment] I wanted after talking it over with my family. I contacted ANA Monday... which resulted in sending a few e-mails. One gentlemen, to whom I will forever be grateful, directed me to your site.

This has been a tremendous resource. I didn't know anything about AN much less the pro's and con's of Gamma Radiation, FSR and microsurgery. Thank you for giving me hope...   I feel overwhelmed and may be swayed back and forth before making a decision. Because of this site, serving as the "voice" for AN patients in all stages, I feel that I don't have to do anything immediately. I may even wait for three to six months and have another MRI...

What a difference 24 hours can make when you know where to go for a resource and fact-finding. I don't feel doomed! Thank you for such a wealth of information and well put together. A valuable resource!  You deserve "congratulations" for putting this all together.

B. Miller (10/18/00)

Our reply:  Many ANers find out about our site from other patients, like you did.  The AN Archive is grateful to our "ambassadors" who take the time to let others know about our site.  We wish that more ENTs were aware of the AN Archive, and encouraged their newly diagnosed AN patients to visit us.  If anyone can help make it a reality, please write to us at <ANarchive@gmail.com>


My name is Kenneth Carpenter; I have the booklet on your Web site about educating my ENT doctor. I have been too absorbed in my activities to sign on to your Web site for about four months. I took a tour last night and was pleasantly surprised as to the changes and new information. You are truly to be congratulated for your work in helping others. I receive about one or two e-mails weekly which I faithfully answer. The most difficult is giving the facts without recommending types of treatment. I pride myself in doing that... I have made some good friends in the process...

You Have Restored My Faith in Humanity,

Kenneth V. Carpenter <kvc2 AT cox.net> (10/11/00)

Our reply: Your booklet is a wonderful resource; thank you for using our site to share it with the whole patient community.  We encourage all AN patients to contribute to us anything they want to share, to help the AN patient comminity in our quest to make informed treatment and recovery decisions.


I'm not an AN patient but my wife is. Unfortunately she is not accustomed to email communication. I deeply appreciate your web page because I could not find best (hopefully, as she is not treated yet) therapy if you were not there. There are no doctors or specialist on the radiosurgery in our country (Japan).

As I am greatly impressed with the kindness of AN patients who gave us many invaluable information, with the systemic, efficient, information network as you developed.  I also thought if you had AN archive in Japanese version, it would help Japanese AN patients greatly as we are very bad at English, usually. Many Japanese AN patients don't know radiosurgery yet. I myself want to build a Japanese version of AN Archives through translating yours.  I feel I must repay AN Archives for its great help.

N. Furukawa., Japan
24 Aug. 2000

Our reply:  We are glad to see that with the miracle of the Web, we are successfully fulfilling our mission of providing help and information for AN patients world-wide!  Some of our pages are already available in French and Portuguese. We will gladly feature pages in Japanese, if you kindly translate them for us.


This morning, 8/21/00, I read an article in the Dallas Morning News by Dr. Ken Goldberg titled "Second, third opinions good to test treatment waters." It refers to a recent study published in the Journal of the American Medical Association.   The medical condition is "prostate cancer" but everything else about the article sounds like the typical experience of AN patients. Dr. Goldberg writes:

A group from the University of Massachusetts, Massachusetts General Hospital, and the University of Connecticut examined how two types of specialists - urologists and radiation oncologists - preferred to evaluate and treat prostate cancer. This was a particularly apt disease to look at, since there are several approaches to treatment, none of which has been scientifically proven to be better than the others... The recommendations (for treatment) break down very much by specialty... Indeed for most categories of prostate cancer, the specialists preferred the treatments they were familiar with.

This is EXACTLY what AN patients run into when their ENT sends them to see the surgeon. If they are lucky the ENT knows about Gamma Knife, even luckier if the ENT has heard about FSR, and luckier still if they find the AN Archive site... It is good to read that the medical community is at least addressing the issue of its own bias toward specialty.

Laurie W.
August 21, 2000

Our reply: It is indeed amazing how the prostate and ANs parallel each other. When reading an article about prostate cancer treatments in a recent Economist (spring 2000), I felt such a deja vu! Everything I know about the AN world was mirrored there, from the treatment options that are not properly presented to the risks (or lack thereof) that are not properly evaluated, to the quality of life problems that are not properly appreciated.  It should not be surprising that the problems we know about in the AN world are systematic rather than specific to our condition. But it was...


As I write I find myself in a very 'strange' situation. Yesterday morning I was diagnosed with AN and seem to have spent my time, ever since, downloading (and attempting to read) so much of the available literature. My first impression is that of the excellence of the site. As I do not even know the size of the neuroma (I hope to find out tomorrow - 17th August) I am not really in a position to even begin an informed opinion so perhaps I am 'cheating' by contacting you already...

So you will likely be hearing from me again as I am a great chronicler. In the meanwhile I noted an interesting statistic, namely that when I logged on yesterday to the Acoustic Neuroma Archive at about midday here in the UK I was number 48225. Today, after logging on at about the same time I was number 48328 - 103 more people have logged in about 24 hours.

Wish me luck
Sincerely,

Michael S., UK
August 16, 2000

Our reply: Many thanks for visiting the AN Archive, and for writing to us! As you correctly noted, we receive about 100 visitors a day to our site (i.e., unique hits). We sincerely hope the AN is small, and you will have a lot of time to continue doing research before making any decisions. Good luck!


I lost my hearing on one ear and partially on the other ear. I also found that I am super sensitive to sounds & noise. I can tolerate one half of the sound that the average person can stand. This condition is making me turn into a hermit. I have withdrawn from many socials such as weddings, receptions, or any place where there ar lots of people, clapping & just about any kind of noise...  Any suggestions or helpful info on sound sensitivity would be most appreciated.

Carmen,
July 10, 2000

Our reply: The problem seems to be that your hearing loss prevents you from being able to separate "foreground" noises, the ones that are important to you, from the "background" noises, the ones that your brain used to be able to filter out and ignore, before the hearing loss. These "background" noises are overwhelming you as a result.

If so, the solution is hearing more (actually, better), not less!  It is quite possible that a very good CROS hearing aid (see http://www.ANarchive.org/hearing_aids.htm) will do the trick in allowing your brain to separate the noises once again, once you adjust to the aid. So please talk to an experienced audiologist who has dealt with this kind of hearing loss before.

Digital ones are better and more expensive, and your insurance may not have hearing aid coverage, but it's worth it if you get your quality of life back! If you think about it, we pay a lot more for a car, when we can do without one if we are willing to give up some quality of life... Just make sure the aid comes with a reasonable money-back guarantee, like a month, so you can give yourself a chance to adjust to it before deciding if it's right for you.


I had a 5 cm tumor removed last October. I lost the hearing in my right ear and my face is still paralyzed on the right side. The 7th nerve is intact but I've grown tired of the dry eye and eye infections. I'm considering a gold weight implant. Can I get any information on the subject?

Shelley,
June 4, 2000

Our reply: Have you tried other things before considering this surgical interference, such as artificial tears and punctal plugs? Please see our "Caring for your eyes" page (http://www.ANarchive.org/eyecare.htm) for a discussion of these options.


I'm writing to tell you how your site really helped me. I wanted to find some information for a relative suffering from acoustic schwanoma. She's only 24 and going through a tough time. So thanks for all the help and information I got from you.

Only one suggestion, I wish you would have a query box, so that I could post you her case history and get a second opinion. In a country like India, where evidence based medicine is rare, the net is a great way to get second opinions from doctors in the US or UK where patients count first. Apart from that once again thanks.

Sashwati Banerjee, India
June 27, 2000

Our reply:  it is nice to know that our "International Site" is true to its name!  We are patient-run, and cannot offer official medical opinions, but we can provide patient-to-patient advice if you write to us at the ANarchive@gmail.com address, and mention in the subject line that you are looking for advice.  We are also working on a bulletin board, so the larger community of AN patients can offer their advice and support to those who post.


My name is Gianni Patrito.  I'm facing an AN experience and thanks to your Archive I was able to read enough about this problem.  I felt very lost when I discovered it but [yours] and the other internet sites helped me to decide... I visited different neurosurgeons but all the information I had was to take it out.  Thanks to the patient directory I could read and decide what was the best solution for me. After a waiting period of about 2 months I had my AN treated with GK in Verona... I would be available for any questions or anybody that need help. Once more many thanks for the great help I had from all of you. Ciao!!

Gianni Patrito, Italy <m.giann AT tiscalinet.it>
13 June 2000


This is an update from Ellen Farfel. I had four FSR treatments in July, 1999 with Dr. Lederman in SIUH. There was a delay in getting a report on the results because the department lost my previous MRIs for comparison. After sending duplicate copies, I was told, over the phone, that the tumor has decreased in size. When I asked for something in writing, I was told that it isn't their policy to do that. When I get my next MRI done, I will surely have my family doctor get a copy of the report. That is the only way to get something in writing. My next MRI will be done in September, 2000. I am thankful that nothing else went wrong after reading about the woman from California!

Ellen Farfel <ellenl AT webtv.net>
27 Apr 2000


First off, great site; it has certainly been a boon for me, providing with much more helpful information than the few ANA booklets I received... It occurred to me while surveying your site that cranio-sacral therapy might be beneficial in the management of the headaches... Has anyone brought up this technique before? I have personal experience with it, as a massage therapist. If you would like more information, please contact me... I am interested in offering treatments to other AN patients.

Sincerely,

Felix Moreau, Albuquerque <kiddflux AT hotmail.com>
6 Mar 2000


[About the review of the AN Archive in the ENT News]
Typical response of ENT's and surgeons!!! They have to get their heads out of the sand, and start to realize that surgery is NOT the best option for AN's!! Of course, IMO, they are thinking only of their "wallets", and not the best treatment for their patients.

Robin Moyer <robin.moyer AT verizon.net>  10 Mar. 2000
FSR patient, and a very happy one


I checked the site [AN Archive] out today and was preparing to excerpt some of the data for my insurance letter...  I was personally boycotting the ANA website because it is too biased toward surgery. I used PubMed to find information about ANs. I'm so sorry I misinterpreted your site, I could have been smarter a whole lot faster... This Internet is a great blessing, not only for the medical data we can get but for the networking we can do.

Inez Petersen <webgirl AT seanet.com> 29 Feb. 2000


I hope you know how many confused and frightened people your site is helping. There seems to be a bit more awareness of non-surgical AN treatment than there was 2 years ago [when the Archive was founded]. Possibly surgery is also improving. Future AN patients will have better choices... be assured that you have helped hundreds.

Your biggest fan in Southern Africa,

Jerry Kemper <jerryk AT imaginet.co.za> Feb. 20, 2000


I must say had you not been so anti-surgery and obviously biased towards FSR I might have taken the site more seriously. I am 11 months post-surgery from a medium tumor. My residual problems include headache (infrequent now), tinnutus (very bad), deaf on right side, slight balance difficulty under certain conditions, dry eye, some facial weakness. But am overall satisfied with the outcome because my tumor was completely removed.

Celeste Fitzgerald, New Jersey 13 Feb 2000

Our comment:  The latest medical consensus is that all AN patients should be followed up with MRIs after their treatment. Statistics show that a certain percentage of tumors believed to be totally removed by surgery end up regrowing anyway.


I'm an operating room RN... I was asked to write an article for "Seminars in Perioperative Nursing" on any ENT topic. I'm a neuro nurse and couldn't imagine an ENT topic until I remembered doing surgery for AN years ago... I found your site ... and am learning a lot! I haven't gone to the library yet but there's so much information available on your site and with all the links - I'm very impressed. Sad to say, I never knew there were options other than surgery (but I haven't seen AN surgery for at least 10 years). I just wanted to thank you for starting this web site and what a valuable service it provides - and not just for patients! I will certainly include your web site address in the article along with other web addresses.

Mary Ritchie, RN, CNOR <cnor AT pacbell.net> January 28, 2000


In spite of that my English isn't very good, I am writing to you. First I wish to thank you for the fantastic Web-site.  There is a tremendous need for a serious Web-site about AN-decease. Unfortunately the doctors often don't inform in a correct and serious manner. Therefore it's extremely important, that we - who represents the patients - are extremely accurate, when we inform about the decease.

In the AN-News 11/99 is written, that no radiosurgeons were represented on the Third International Conference on Acoustic Neuroma and CPA Tumours.  I attach the program for Monday, June 14, 1999.  As you can see there were several radiosurgeons represented.

Yours truly,

Claus Joergensen, Dec. 11, 1999
Vice President, Dansk Acusticusneurinom Forening
Address:  Aasletten 16, 3500 Vaerloese, Denmark

Our reply:  Many thanks for writing, and for this information! We have corrected that item in the AN News.


Please accept my continuing thanks for your voice on the vital services your web site provides.

I had FSR with Dr. Lederman on my 2cm AN in June. I had my first MRI's in November and was thrilled to learn that my tumor has shrunken...  It is almost impossible to believe that I had such a serious problem as an AN, since the treatment resulting in the tumor reduction was so totally painless! My only symptom prior to FSR was mild hearing loss in the affected ear, which still continues... People must be made more aware of the option of FSR. Most surgeons, if they mention radiosurgery, refer to Gamma Knife...   the patient never hears about FSR. Thank you for this site which helps spread the word.

Wishing you happy holidays, and a HEALTHY New Year.

Judy Habib (1 Dec 1999) <EJHabib AT aol.com>


Many newly diagnosed AN patients have contacted me from my posting on the Acoustic Neuroma Association Guest Book. I have directed them all to this site. You perform a great service. Thank you.

Bobbie Towbin (8 Oct 1999) <EBTOW AT aol.com>


Thanks for the wonderful information that you have made available to all those people who are suddenly told that they have an AN. I have been a Wait & Watcher for over 5 years and lots has happened in this period of time.  Until I got a computer obout 3 1/2 years ago and got on line I was in big deep trouble to get information.  Keep up the good work.

Barney Sherman (7 Oct 1999)


I find it most strange that it that were not for my heart condition I would have already have had surgery and could have possibly be suffering the consequences. But because of this malady I searched for an alternative option and found your Web site. Thanks for your Web site I have become informed ... thanks for being there.  I cannot express to you the gratitude and appreciation for the work that you are doing.

Kenneth Carpenter (2 Oct 1999)


I have been following your website now for over a year and you have been so helpful.   My AN is 1 cm, small and growing slowly since my microsurgery to remove it in 1988. I decided to deal with my regrowth of the AN through FSR with Dr. Lederman in SIUH. I have finished the four sessions and have no side effects.  The sessions were done smoothly and expertly and I have no complaint. Hope to see necrosis of the AN in the future. I will keep in touch.

Thank you for your fine website. You have been very helpful to me. I think your website is so comprehensive, that is the only tool patients need for researching acoustic neuromas.

Ellen Farfel (30 Jul. 1999) <ellenl AT webtv.net>


I would like to thank Dina and all of the contributors to this site.  The information has been invaluable to me. If not for all of this information, and certainly if I wasn't a physician, I almost certainly would have been talked into surgery by now.   Being able to find and investigate all of the data myself has been a huge help.   The patient stories posted here were also VERY helpful. 

Louis H. (7/19/99) <lh1969 AT hotmail.com>


Hello. I love your web site. One feature that I would like to see deals with people who are applying for disability retirement after AN surgery. I am employed with the U.S. government and had AN surgery in Febuary 1996. I have not done well since and would like to know if others have retired from work because of their surgery. I'm sure others have been in the same situation... I feel that a small section of your page would answer a lot of AN patients concerns over this problem. Thank you.

June 13, 1999

Our reply:  Thank you for writing and for a wonderful suggestion. You are indeed correct,  and post-AN-surgery disability is relatively common. We will work on a page about it - so keep visiting the "what's new" section.


It is terrific that we have resources like the AN Archive for patients to share information. Getting information from the medical community about their procedures/treatments is one thing; finding out how patients have been affected by them on a daily basis and over the long haul is priceless!

Lynn Skousen (4/22/99) <LSko590387@aol.com>


I found out about your site because someone had placed a message in the ANA guest book saying something like "don't believe anything you read on the ANarchive site, they're liars."   I'm delighted to have found you and am thankful that you are doing this. If you didn't leave the guest book message, you should have. It's a great way to get people to tune in.

Bobbie Towbin (4/9/99) <ebtow AT aol.com>

Our reply:  Yes, we also saw that message, but no, we did not place it!  We also heard that the person who placed it does not reply to questions about it, we'd love to know why he/she feels the way they do.


I thank you so much for your Web site!  It has been a blessing and has removed much confusion that I was experiencing before I found it.  I was thoroughly confused with the information supplied by the Acoustic Neuroma Association.

On January 21st, 1999 I was diagnosed with an AN of medium size.  I have severe coronary artery disease and I am a prime candidate for radiosurgery of some sort.    Over the past three months I have on several occasions e-mailed the ANA asking for information about radiosurgery in any of its forms but the Peacock method specifically. All I would receive is a statement saying they did not recommend any type of treatment. Last week I finally received a booklet on radiation treatment but the most current information that was supplied was written in 1992 and in 1993.

I would not say that the ANA out-and-out lied to me.  However, I have found out with many communications and visiting the ANA's Web site that they do omit things of importance to someone who has been diagnosed with an Acoustic Neuroma. From where I come from the sin of omission is as damaging as a commissioned lie.

Thanks again,

Kenneth Carpenter, Baton Rouge, La. (4/8/99)

Our reply:  We are the only organization that we are aware of that is dedicated to the needs of the newly diagnosed AN patients. ANA USA was founded as a support organization for post-surgery patients and they are very good at this job. Our "AN world" section contains a discussion of ANA's policies and possible reasons for them.


Thank you very much for your help. I understand that the ANarchive is yours. It's great help.

I was rather late in discovering it though. When others recommended that I see it, I somehow thought you were referring to certain pages of the "www.anausa.org" site. I have since realized that that was a huge mistake. I explored many other sources before finally finding yours...  I hope you'll choose to put my story there some day after my perspective has seasoned.

Thanks again,

Byron Jones <beedj AT atnex.net> (4/7/99)

Our reply:  You are not the first to make this mistake.  Our homepage states right at the beginning that we are not affiliated with ANA USA, but of course one has to get there first :)


HELLO,  I HAVE BEEN AN AN PATIENT FOR 12 YEARS NOW. I LOVE TO READ ALL THE INFO ABOUT AN'S. YOU ARE DOING A FANTASTIC JOB WITH ALL THE INFO THAT IS AVAILABLE. BACK IN 1986 THERE WAS HARDLY ANY INFO. WOW, WE HAVE LEARNED A LOT OVER THE YEARS...

Paula Chapman (4/17/99)


What a relief to find your page.  My husband was just diagnosed last month.   He is just 45 and we have 4 young children at home.  I thought I was doomed to be a widow.  His tumor is in on the right side.  He is left handed - Is that why most right handed people have theirs on the left?  We live in between the San Francisco Bay Area and the Sacramento Valley in California.  We have been referred to UC Davis.  Any comments or suggestions?

<S10EDGE AT AOL.COM> (3/16/99)


Hello and thank you for having so much information available to those of us who have AN...  I have been diagnosed with AN six years ago and I feel that any information will be very helpful in my making a correct decision.

Thank you,

Mari (2/17/99)
Hawaii


I was hoping to find some listing of AN specialists (surgery and radiation treatment) showing the number of patients that they have treated and the corresponding treatments used.

Herman Platas (2/14/99)

Our reply: We have a great radiosurgeon directory in the "AN World" section. A partial listing of AN surgeons is available at a different site:  http://mywebpages.comcast.net/wiggins706/acousticphysicians.htm .  As for the provider statistics, such information is not available on-line as far as we know.  We agree that it would be great if it was, so we invite all patients to obtain the most current statistics from their doctors and send them in:

We will publish a surgeon directory as soon as there is enough data.  For everyone's benefit, the data should be as objective and informative as possible. You may want to read our advice on separating objective data from misleading descriptions.


Your web site is absolutely wonderful - I send potential patients to it ALL the time. I think it is so helpful - reading the patients own account.

Marcia <MMor730 AT aol.com> (29 January 1999)
San Diego GK Center


I was looking for information about vestibular rehabilitaton exercises and found just what I was looking for on your website. Thanks for providing people with so much information. We need all we can get. I am currently watching and waiting with a regrowth of an AN after microsurgery in 1988. Will have radiosurgery this time. In the meantime I have had a slight stroke affecting the left side, with the AN on the right side. Now I am really unbalanced!

Ellen Farfel <ellenl AT webtv.net> (4 Jan. 1999)


I must thank you for presenting such clear and decisive information on the alternate treatments available! The AN Archives is a wonderful resource and provided me with the information I needed to make a decision that took into account all the options.  Your information is a great form of support!

Edie Catto (3 Dec 1998)


I was browsing your work and am totally impressed and admire how extensive and user friendly all of the information seems to be.  I admire what you have done and think you are providing more and better info than could be obtained anywhere.

Rosalie Goldman (22 Nov. 1998)


Dina, I am writing to support you as the editor of the AN Archive and contributor to the AN-info list. I have been interested in AN only 10 days, because before then I had never heard of it. I have found your archive to be invaluable. As I read through it, it seemed you were more enthusuastic about radiation, especially FSR, than microsurgery; since I was rapidly feeling the same way, this did not bother me. Nor did this seem in any way 'dishonest'. And I thought this bias was probably much needed to offset what I saw as a lot of bias by others against radiation treatments, some of which DID seem 'dishonest' to me. I have been rather disheartened to get the posted info packets from the ANA and see radiation 'officially' poo-pooed so blatantly, and the packet from the Radiosurgery Assn. which turned out to really be a 'GK Assn.'

The person who points out that 'the emperor has no clothes' is usually not entirely popular.  Perhaps I am naive, but FSR does sound 'too good to be true', and is bound to stir up what amounts to jealousy amongst those who have a vested interest in it NOT being good, for a variety of reasons.

I sense that you make a strong and successful effort to present data in an biased honest manner... I think you are doing a terrific job.

John D Armitage Jr, PhD <johna AT gj.net> (20 Nov. 1998)


At my last appointment it was more or less wrapped up that I was recommended for surgery and that's what I would get. This time I feel so much more informed on what I should be asking about before I make any decisions. That is down to the wonderful website that has been created at http://www.ANarchive.org/

Deborah H. (13 Nov. 1998)
England


Would you believe it, I finally took an hour an a half to look at your Archive extensively.  My sincere compliments.  I think you've got a balanced piece of work there.  Again, you have my my admiration.

Best,
Ya'akov Almor <inside AT inter.net.il>
Herzliya, Israel
(7 Nov 1998)


I just have had the time to puruse the ANarchive. What a nice job you have done. If I only had had this medium when I was diagnosed!!!! I found GK, but the hard way. This is a great reference. I particularly liked the article by Dr. Georg Noren. Of course I am prejudiced since he did my GK! Congratulations again!

Andrea Kennedy <Pelican94 AT aol.com>
(6 Nov 1998)


You've got a great site. I only wish I'd found it during my two months of searching for information. It would have made my decision a whole lot easier. I particularly liked the "AN anatomy lesson for dummies." It told me a couple of details I'd only known only in general.

Sherman Watkins <SWatkins AT 24hourfit.com>
(28 October 1998)


Your site is by far the best researched site on ANs that I have come across!

Lisa Probst <lprobst AT nortel.ca>
(28 October 1998)


I work for the GK Center - not an AN patient, but we have treated a number of them.   I read your page about "myths". WOW. Our experience has been VERY FAVORABLE to GK for AN, meaning that the outcome makes GK a favorable choice. Our patients are really doing well - 75% preservation of hearing.  Some may have some minor numbness but that isn't the norm. They all seem so pleased after making GK their choice and then having it be successful.

We have sponsored an AN seminar in La Jolla and had patients come. Everyone loved it. I have also atteded an AN support group meeting - yikes - saw a lot of droopy faces and eyes that don't want to close.  I do education for health plans, etc. and when I talk to the case managers about AN they all seem to know of a surgery gone bad and agree they would send for GK consult.

Marcia <MMor730 AT aol.com>
San Diego GK Center
(27 October 1998)


Please accept my congratulations and thanks for the multitudinuos information that the Archive site provides. I am a 45 year old Brazilian who lives in the city of Sao Paulo and I have been very recently CT diagnosed with a 2.5 cm AN, the size, shape and location of it will be known due to the MRI taken yesterday.

The problems and dificulties you may have in the USA, Sweeden, Denmark, UK, etc.., should be quadrupled when one thinks about the lack of information and proper treatment in Brazil!!

Thank you again and best regards,

Roberto P., Brasil
(22 Oct 1998)


I have just been into the Archive and have read and printed the latest information from the patient who presented his insurance case. What a wonderful addition to the area. I really want to thank you for putting this all together. All the information will save so many people the months and months of research that so many of us have been through.   I wish to goodness this site had been out there when I was looking for information, would have saved me months of individual research and slow slogging trying to get together various kinds of information and details.  I took days and days off work in September 1997 so that I could stay at home and search the internet. With my older computer at that time it too hundreds of hours. I am sure that your archive is saving newly diagnosed those hundreds of hours, researching options between surgery, radiosurgery, etc. etc. Your archive has provided a very real and time-saving device in our fight against our ANs. At least we can start with the information you have compiled and then go onward.

Lynne Shewmaker <ausprim @ charter.net>
(20 Oct 1998)

Editor's note:  Lynne's story is  available in the Patient's Directory.


I have to thank you again for giving me the insight of looking beyond traditional invasive surgery. The AN Archives gave me the information needed to make rational decisions based on other AN members stories and treatments. I would like to share with you my story to date and what treatment I decided to take. Please feel free to use any or part as you see fit and feel free to have anyone contact me to discuss.

Mike Boudreaux <mboudre981 AT aol.com>
(12 Oct 1998)

Editor's note:  Mike's story is now available in the Patient's Directory; not a letter was changed.


I was not aware of the other treatments, options, risks, timing, etc. I am now. I am very appreciative of the people who have placed the information on the condition and the treatments and associated risks on the net... It has helped me through the panic stage... Your web page is the best info I have seen thus far.

John
(7 Oct 1998)


I am going to encourage more people to post to your archive. It is so informative and comforting.

Marilyn Bush <MJBush AT aol.com>
(27 Sep 1998)


My husband has a glomus jugulare ear tumor. He had it removed in 2 consecutive surgeries in 1977 and 1978., with lots of blood loss, some facial nerve damage, and some cranial nerve damage. At that time he was in his mid twenties and recovered pretty well. Then this year he had some drainage coming from the same ear. Went to doctor and they said tumor was back and it was spinal fluid leaking from his ear. They said he must have surgery immediately because of the spinal fluid. Surgery was scheduled with embolization of the tumor planned the day before scheduled surgery. They explained with the embolization, cutting the blood flow to the tumor, surgery would be less risky, there would be less blood loss, and trying to preserve the nerves would be better. With the embolization, one of the risks involved is a stroke, and that is what happened during the procedure. Of course, surgery had to be postponed and after the embolization the spinal fluid stopped leaking. That was 6 months ago and it is only a matter of time, very soon I suspect, that they will again have to set a surgery date.

After everything that has happened we are both very scarred to face the surgery now and I have been desperately searching for an alternative to surgery. Your web site helps a lot...

Sissy M
(14 September 1998)


I am in the middle of researching what is best for my 3.2 cm AN and have found your website the most informative and extremely OBJECTIVE one by far!!!

Dennis <Bitofwit AT aol.com>
Head of a mental health R&D team
(27 August 1998)


I visited your site and found it very informative. I have no vested interest in GK radiosurgery vs microsurgery for my pts since I perform both procedures. You are right that we surgeons have an ethical and legal responsibility to obtain informed consent. In CA the failure to obtain informed consent may constitute medical neglegence. Given the options, virtually all patients opt for radiosurgery. We have treated about 50 patients since our center opened in 10/94. I am in the process of reviewing our results in terms of complications and tumor control. We had one transient facial weakness, lasting weeks and no permanent cranial nerve deficits. I am sure the control rate will be over 90 to 94% as in other series.

There is information regarding microsurgery and GK radiosurgery in my web page: www.sd-neurosurgeon.com.

Kenneth Ott, MD <kott AT cts.com>
Neurosurgical Medical Clinic, Inc., San Diego, CA
(24 August 1998)


When you first mentioned the "Archives", I assumed you meant the ANA's Archives. After reviewing the  "real" AN archives, I feel totally overwhelmed. I have been reading for the last three hours and find that what I deduced this morning of a "immediate" need to have surgery and accept the consequences of side effects, ... and now I am dumbfounded that I could possibly have an alternative through fractionated radiotherapy.  I have been told by surgeons that this was my only recourse and should be done immediately... Now I feel somewhat deceived and yet a bit of jubilation at the possibility of an alternative.  Right now I have no clue as to what path I shall take, but I am going to do a great deal of further research.  I must tell you, Thank You very much for the much needed additional information and the unbelievable stories, both good and bad. It is such an eye opener.

I was diagnosed on Monday August 17... I felt my world was coming to an end and I needed to get my life in order. On Tuesday and Wednesday and until a few hours ago, I was preparing myself for horrendous experience in surgery. Right now I feel again overwhelmed but in a much larger "elite" group of AN associates with a possible alternative of treatment.

Thank You again. I look forward to visiting regularly.

Mike Boudreaux <mboudre981 AT aol.com>
(20 August 1998)


Thank you for all the good work you are doing with your Archive.  You are helping many people.

Sincerely,
Beverly Tinkham <Bev189 AT aol.com>
(11 August 1998)


After sending you my note last night, I realized you are the creator of the fabulous archives. I've been telling everyone. Your web site has given me the most useful information of all the others combined. At least 10 people have referred me to it and I can see why. Thank you from my heart for the work its entailed and the people you've helped. Sorry to get goopy but it's true!

Sincerely,
Maryjane Wysocki <jwysocki AT illuminet.net>
(7 August 1998)


Had translab surgery November 18, 1996 for a small AN (approx. 1cm) by Drs. Ojemann and Poe. I am deaf in my left ear and have the occasional headache (2-4 Advil work), and occasional teary eye when I chew. I do have tinnitus but that existed prior to surgery. After reading the other surgical stories I felt compelled to share mine as I am one of the very lucky ones to have faired so well. I do wish I had had more knowledge prior to surgery, I don't have any major regrets because I was so lucky, but I would have loved to have been able to have saved my hearing. We did receive a sense of urgency from both surgeons and when we asked about other options they immediately shot them down. I also had this need to "just get this thing out of me!". The surgery occurred on a Monday (approx. 9 hours) and I was informed Wednesday night I was being discharged the next morning. The next 8 weeks were very unpleasant. When I called Dr. Poe 2 weeks post-op because of the pain, I told him he did his patients a huge injustice by not informing them of the extent of the pain and discomfort that they would endure. Fortunately, some physical therapy along with the healing process, my life is back to normal, although not the same as pre AN. I truly believe no one's life is the same after AN regardless of their choice of treatment.

Thanks for your archive, it has reinforced just how fortunate I am!

Jane Cohen <JCinMA AT aol.com>
(2 August 1998)


Unfortunately medical breakthroughs aren't always available for everyone, it can depend on where you live. The average person may have to take the treatments offered in their area or as suggested (at least in Britain where medical treatment is free). We ourselves have always had private Medical Insurance, so unlike the majority in the U.K., we do have a choice, though still return to the original hospital (now 250 miles away) where my wife made Medical History 23 years ago and where we have so much confidence in her neurosurgeon and his team.

I personally don't like the use of your phrase "Patients Beware". It could be quite alarming. Overall please try to give a more positive approach rather than such a gloomy outlook! Patients need this when they've got neurological problems. With today's new technology and treatments, many more patients will have a good prognosis. Everyone must keep thinking positively. I hope you agree?

Peter Sowrey <peter.sowrey AT virgin.net>
(31 July 1998)


Just a note to thankyou for the AN pages. I had brain surgery in 1986 for benign meningioma. You are an inspiration to those of us who are surviving and thriving, with your dedication and devotion to informing other patients. Thanks again,

Anne B.
(22 July 1998)


I went to your web page after I received your other letter. Boy I wish I would have had a computer when I found out. EVERYTHING you have stated in dispelling AN myths. Well I was told that my tumor was so large that the only option I had was surgery, it was going to kill me. I was never informed of any other options besides translab approach.  As far as the quality of life, well I agree with you here, my life isn't anywhere near normal, whatever that is at this stage of the game. Well if nothing else I am an expert on what NOT to do.

Debbie
(11 Jul 1997)


You have devised a splendid tool, that AN web site, the most efficient part of it is the patient's stories. Look at the posts! Before making a decision, each new ANer's as you call them want to read and compare... I wish you had more surgery stories. Not only the bad one, it would appear dishonest again. I wish it would offer more of the possible unconventional alternatives, like what other country do, tumors controlled by food and herbs like homeopathy, more links to access published articles, medical journals not only in North America but if any of us found one anywhere in any foreign tongue, to pass it along.  Joining forces with Tinnitus groups might bring a few good surprises too.

Antoinette
(22 Jun 1998)

Our reply:  There are many sites with AN surgery stories;  for example, we have a link to the ANA guest book in the Reference Links section.  Many more can be found with a web search engine like Yahoo or Alta Vista.  We even have a "good" surgery story ourselves, Debi's story in the Other Stories section.  We are here to provide information that is otherwise hard to obtain, and we do not want to compete with existing sites.  However, all the other suggestions are excellent, and material on these topics will be published in the Archive if and when it becomes available to us.


Hello, thank you very much for your website. I was recently diagnosed with an AN in my right ear, about 4-5mm after having some hearing loss and MRI. All the doctors were pointing toward surgery. After reading the ANA website and getting info from them, reading a lot of patients stories, I was very upset. I also spoke with some regional cases who also experienced some dreadful ramifications. While I was in my car I heard an ad on the radio [about FSR]. I was very interested to find out more. I went back to the ANA website which led me to your site... Thank God for you and the internet. I was amazed to see how biased some surgeons and medicine are. The internet certainly makes us more informed consumers.

Rick
(22 Jun 1998)


Hi, I was just diagnosed with a 12mm x 6mm AN a couple of weeks ago... Your site is very helpful... One topic I'd be interested in learning about: Have other alternative treatments (besides radiation) helped anyone? I'm thinking of things like ginkgo, which is supposed to be good for "circulation of the head", or reishi, which is supposed to aid the body's natural tumor-fighting function.

Steve
(6/21/98)

Our reply:  if anyone reading this can contribute some bit of information, we will appreciate it!


Thank you for establishing this page. My wife's AN surgeon stated he would not reduce her quality of life and, as a reference, had her speak to a patient without negative outcomes. However, her headaches during the two years since surgery have reduced her enjoyment of life and are often unbearable...  I wish we had waited and known about FSR. Two of the physicians we were consulting before surgery had agreed we might wait but the surgeon with more power convinced one of them to agree with him that immediate surgery was advisable...

Thank you for providing information on FSR to others.

Sincerely
Earl
(6/14/98)


(the notes below were contributed before we started dating the comments)

The AN Archive looks great. So much, in terms of rushing to make a decision, is "right on the mark"... reminds me of me over two years ago. 

Wanted to congratulate you on the AN Archive... I think it will prove to be an invaluable resource for those seeking alternatives to the 'conventional' treatments for ANs. You are to be commended. 

Congratulations and my admiration! A great site, more helpful than polemics from well meaning ex-patients. 

It is very well done and very valuable. There is so much confusion out there and the choices can be almost traumatizing... Keep up the good work. 

Very very impressive work. Thank you for making this important contribution to our community. 

I just took the time to read almost your entire AN website and want to tell you what a marvelous public service you have performed. It is of incredibly high quality... thanks again for such a marvelous effort! 

Your archive is the most worthwhile thing for pre-treatment people that I know of 

Just happened to check in on your archive and am prompted to tell you, once again, what a nice job you've done. Were it two years earlier, I could have learned a lot more prior to my surgery (and all of its post-op complications). Three cheers for you. Keep up the very good work. 

Good luck to you in bringing alternatives to people. I think we need to keep at it so that people know there are other things to do. 


Last Edited: Monday, November 17, 2003