• Kenneth's story
• Kenneth's booklet for his ENT
• The reply letter from Kenneth's ENT
• Updates

Note: you can read more about the role of ENTs for the AN patient community here.

In January of 1999, I was diagnosed with an 15x12 mm Acoustic Neuroma. Dr. Stanley Peters, the ENT doctor that made the diagnosis referred me to one of the best surgeons in this area. The surgeon advised me to have this tumor removed by surgery.  I was very interested in alternative options to surgery because of a severe heart condition that I have had for some 15 years. It was his advice to have heart surgery, and then surgery to remove the tumor, by which I would lose the hearing in my right ear. 

The surgeon did not specifically say the surgery was of an urgent necessity; however, the information he provided indicated that I should have this done sooner rather than later.  He also provided the with informational pamphlets from the Acoustic Neuroma Association. Information about "radiation" and the possibility of its cancerous effects was also provided. I was also advised upon exiting his office not to believe the information on the Internet regarding the adverse opinions regarding surgery.

Of course, I immediately went home and searched the Web and read about Radiosurgery.   For about two months, I read everything on the Acoustic Neuroma Association Web site and was becoming somewhat fearful of my prognosis. Luckily, I somehow stumbled upon the Acoustic Neuroma Archives and I was given a New Hope and prospective for my future. I spent many hours reading every line on the Acoustic Neuroma Archives Web site and e-mailing as many treatment facilities and patients that I could possibly speak with.

I also consulted with Dr. Stanley Peters, my ENT doctor for advice.  When I selected this doctor, who was referred to me by people of position at two major hospitals in Baton Rouge, he was described as the doctor's doctor. They use this description because they said he was the doctor that most doctors went to, and the doctor to whom they sent their families. He has great credibility and credentials in this area, Baton Rouge, Louisiana.  Dr. Peters honestly informed me that he could not advise me in regard to surgery vs. radiosurgical methods. He had heard of Radiosurgery but did not think that it had been perfected enough to choose that option. However he did admit that he was not an authority on alternative methods and that what I had explained to him left him indecisive.

After many hours of studies and advice I came to the conclusion that unless the tumor was the size that calls pressure on the brainstem I would "wait and watch" to determine the growth rate of my tumor.  On July 23rd, exactly six months after my diagnosis, I had another MRI and hearing test that indicated there were no changes.

Before going to my ENT doctor to receive the above information I made a booklet to give to him explaining what I have found in the Acoustic Neuroma Archive. The booklet was somewhat critical of his office literature, which was from the Acoustic Neuroma Association, and very critical of the surgeon he had suggested. A very good friend, who is a supervisor at a local hospital, had advised me not to provide him with this information if I intended to use this doctor or the surgeon he referred. However, after seeing what is going on in this field regarding Acoustic Neuroma treatment I felt an obligation to others who would be diagnosed by this doctor in the future to provide him with this information.

At my next office visit, I provided my ENT doctor with the booklet I created, and a diskette copy of the booklet with information from your Web site that he could click-on an access additional information from your Web site. I explained my disappointment in the medical profession in regard to this matter. Very much to my surprise, when I presented this to him he stopped all phone calls and seeing patients for about 45 minutes, and seemed very interested and amazed at what I was explaining to him. About 10 days later I received a letter from him in which he thanked me for this information and said he would pass it on to future patients that he diagnosed with Acoustic Neuromas. He told me personally that he was also going to share this information with other doctors.

I am attaching the booklet, and the letter I received back from my ENT.  I try to expose the information in this booklet to as many people as possible, especially newly diagnosed AN patients. One case that I know of has changed doctors and is in a "wait and see" mode.  I can also e-mail the Microsoft Word document to anyone interested, so you can modify it as needed and give it to your doctor.

Yours,

Kenneth Carpenter <kvc2 AT cox.net>
Baton Rouge, LA
August 1999 

Kenneth's informational booklet

[Ed: Only the table of contents, the introduction and the summary are reproduced in full.  For the other sections, there is a link to the original text in the AN Archive and elsewhere, and only Kenneth's comments and addendums are reproduced. You can obtain the Microsoft Word document directly from Ken, to modify it as needed and print it out for your doctor].

TABLE OF CONTENTS

INTRODUCTION...................................... 1

THE AN PATIENT'S MANTRA........................... 5

ON THE STRENGTH OF MY RESEARCH ................... 8

THE AN ARCHIVE CONSTITUTION ...................... 17

THE DUTY OF INFORMED CONSENT...................... 19

(RE)EVALUATING THE REWARDS OF AN SURGERY.......... 22

FSR for Malignant and Nonmalignant Tumors......... 24

FSR IN UNITED STATES.............................. 31

SUMMARY........................................... 34

INTRODUCTION

Dear Dr. Peters,

I have tried to make a booklet to supply you with information I have found in my research for alternative methods to surgery because of my cardiac condition. It should be noted however that I would choose some type of radiation surgery even if I was in perfect health as do many people when informed of all the facts. I have also learned that "facts are what is important not opinions".

After glancing over some of my addendums and added comments I see it may appear that I do not appreciate your quick and accurate diagnosis and your referral to Dr. Amedee at Tulane Medical School. This could be no further from the truth. I was very fortunate to have such a quick diagnosis, unlike many of the people I have spoken with and read about. I'm thankful for your referral to Dr. Amedee and I do consider him as one of the best in his field, but like many in his field, he has been too absorbed in his practice to keep updated in fields other than his own. I would only opt for surgery if the tumor size and/or shape were causing pressure on the brainstem. If I did opt for surgery I would strongly consider not the Amedee for the surgery.

I do believe however, most emphatically, that the patient should be informed about the Acoustic Neuroma Archives and the Acoustic Neuroma Association and decide for him or herself the mode of treatment.

I am thankful and consider myself lucky for being referred to you. I do remember that you were the first and the only person who suggested that I might want to "wait and watch".

This booklet contains letters of patients that have experienced primarily FSR (Fractionated Radiosurgery) and the Peacock Method of treatment. I share many of their experiences, joys and frustrations since being diagnosed with an Acoustic Neuroma. Their stories represent my story and feelings in many ways.

I know that your time is valuable so I selected only about a third of the information I have collected. I have underscored and bold printed the things that I thought would be interesting for you to read from my standpoint of view. This is also to be an exclaimer to the importance of that particular statement.

If you sign on the Internet and view this booklet on the disk provided you will be able to double click on any of the blue references and the Internet well access them. I hope it is not to presumption of me to supply you with this information but I truly feel that it is a good idea being that you're in the position to diagnosis and refer people with Acoustic Neuromas for treatment.

I will understand if you do not share my opinions. I do realize that majority of medical professionals are doing what they think is right for their patients. I would appreciate your opinion on the contents of this booklet and after you have time to review this information I would be glad to pay for an appointment to discuss my views on this information.

My home phone is 225-272-0578 and I can be faxed at the same number with notice.

Thanks, Kenneth Carpenter

**My e-mail address is kvc2@cox.net. (I'm going to give you a disk of this booklet. You can simply sign on the Internet, insert the disk in computer, open the booklet and then you can double-click on the blue addresses or information and the Internet will access these sites.)

THE AN PATIENT'S MANTRA

link to text

Addendum:

Another statement made by the Acoustic Neuroma Archives is "don't listen to opinions listen to facts only". Seems like sound advice that you do not receive from the Acoustic Neuroma Association. That is the literature in your office.

ON THE STRENGTH OF MY RESEARCH

link to text

Comments:

• After much research I agree with this person's findings about the variety of possible surgical risks. There are also a larger number of people who have headaches and vision problems. Dr. Amedee failed to mention this.
• In addition to surgery costs, many patients undergo additional surgery to correct problems caused by the original surgery or because of regrowth, or because they left some tumor remaining. From what I read and the people I have been communicating with this happens more than the surgeon tells the patients.
• If FSR is a Medicare - approved treatment, I do not understand why it is not considered "Standard Care" as mentioned in the Informed Consent Form.
• When I went to see Dr. Ronald Amedee at Tulane Medical School the only information that he supplied me with was about Gamma Knife and he also informed me not to believe "all" the information provided on the Internet (I had some computer prints-outs with me) about Acoustic Neuromas and surgery. If I make my decision "on the facts instead of opinions" I will have to go with the Internet information instead of doctor Amedee's.

Addendum:

I am most impressed by the Acoustic Neuroma Archives Web site for allowing the printing of the statement "may be biased are incomplete". The Acoustic Neuroma Association Web site is not so honest; for instance, it does not tell you that its board is made up only of surgeons and that their Web site is very biased toward surgery. In my opinion, the Web site of "The Acoustic Neuroma Association" and its literature is very dishonest about a very serious treatment. To me, what the Acoustic Neuroma Association is publishing borders on the line of malpractice if not criminality.

THE AN ARCHIVES CONSTITUTION

THE DUTY OF INFORMED CONSENT

link to text

Addendum:  

I do realize that this has nothing to do with you however I am trying to communicate the feelings and understanding that a patient has when they enter into treatment of a serious condition as a brain tumor. The information pertaining to radiation types treatment that I received from Dr. Amedee was "one blast of radiation hits the tumor (wrong) and the tumor explodes leaving particles of tumor in the cranium that may grow back because they were not destroyed (wrong). Then these particles may reattach to the nerve and grow another tumor. After the growth of a second tumor it is an impossibility to radiate the second time and surgery would be the only possible way to remove the second tumor. (wrong) When the surgeon would go in to remove this second tumor, because of all the scar tissue caused by the high dosed radiation blast, his job would be much more difficult because the tumor attaches itself to scar tissue which has embedded itself into the nerve. Because of the delicacy of this regrowth,  the patient has a higher probability of side effects, and the surgeon will have to operate in a highly radiated area." (wrong)  He also said "the procedures had not been practiced long enough to know if the patient would not develop cancer in the distant future." This simply is not the truth today! This may have been true 20 years ago and I would think that Mr. Amedee should have the responsibility of providing up-to-date information on alternative methods of treatment. To me that would be a part of "Informed Consent". He seems to appreciate this as "standard medical practice" because he explains it has an alternative. But this information is simply wrong because it is outdated.

(RE)EVALUATING THE REWARDS OF AN SURGERY

FSR for Malignant and Nonmalignant Tumors

Comments:

• "One of the primary differences between standard radiation and fractionated stereotactic radiosurgery is that standard radiation radiates large amounts of normal healthy brain compared to radiosurgery that is focused on the tumor."  This standard method is what was described to me by Dr. Amedee, as if it was the only one.
• There is a story on the Acoustic Neuroma Archives of a man named Chuck who has had 2 acoustic neuromas removed, one by surgery and the other by a Fractionated Radiosurgery called the Peacock Method. His story compares the differences of the two treatments. Every male family member (8 in number) has had Acoustic Neuromas. He is the first to opt for Radiosurgery and family members are amazed at this non-invasive procedure that left him with no additional side effects. The only side effects that he occurred was doing the normal surgery.

FSR IN UNITED STATES

Since my diagnosis in January I have had the opportunity to actually follow persons' cases and communicate with them via email. The actual cases I have followed are small in number and I realize do not give an in depth study to compare surgery to radiosurgery. However, with the much research I have done and the actual experiences of those I have followed, I have reached an opinion. There is no doubt in my mind that radiosurgery is preferable to surgery unless tumor is of the size or location to put pressure on the brain stem.

Letter from Kenneth's ENT doctor

Dear Mr. Carpenter,

Just a note to thank you for the very interesting notebook you prepared for me regarding non-surgical treatment options for acoustic tumors. Our discussion in the office was extremely enlightening and I very much appreciate your perspective on the entire matter. I will forward this information to patients in the future and plan to incorporate it into my treatment plan as well.

Again, thank you for taking the time to help "educate" your doctor.

All the best to you and yours.

Sincerely yours,

Stanley E. Peters, Jr., MD

Updates

(2/00) I am in a "wait and see" mode and have experienced no change in symptoms or size. However, due to other medical complications it may be advantageous for me to act before I see a change.

I have no medical training, however due to a history of medical problems with family members and myself I have experience dealing with the medical establishment. I know the importance of facts and I realize how easy it is to get facts confused with theory and opinions.

So I am constantly staying up-to-date and will be more than happy to assist other ANers in anyway possible. I am finding that every time I help someone else I learn facts that are beneficial to me so do not hesitate to ask any question -- no question is silly or stupid.

(11/00)  My ENT, the one who thanked me "for educating your doctor", no longer has literature from the Acoustic Neuroma Association in his office, and he has incorporated information about Radiosurgery in his diagnosis to patients found with Acoustic Neuromas.

(10/01) 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.

©

Back to Kenneth's entry in the Patient Directory

Last Edited: Wednesday, October 30, 2002