I was diagnosed in July of 2000 with a good sized acoustic neuorma. Quite frankly, I was relieved when I was told this news. For the past 3 years, I had been experiencing some strange sensations on the right side of my face, i.e. mild numbness, tingling, etc. -- and went to a variety of specialists, and also an oral surgeon (periodontist) because of numbess in my upper right gums and back molars. All of these people told me that they saw nothing and that I was imaging things. Finally, I went to an allergist who convinced me that it was all allergy related. I allowed him to give me the scratch test series and then begin a whole protocol of drugs and sprays -- none of which did a thing.

When the diagnosis was made, I finally understood that all of these sensations were real. What solidified the condition was the fact that I had also begun encountering some hearing difficulties on the right side. When I finally went for an audiogram, and then ultimately an MRI, the acoustic neuroma appeared and then I finally knew what was occurring. I wasn't imagining and I wasn't crazy!

When my ENT doctor informed me of the news, he recommended to me, automatically, that I have surgery (without even mentioning to me any options or alternatives) and encouraged me to pursue the surgery with a noted institution on the West Coast. I found out on my own, by doing my own networking, then there are a few highly reputable surgeons that do AN surgery right in my own city!

Incredibly, after I sent the MRI to the staff on the West Coast, within a matter of 24 hours, I received the first of a series of phone calls from this clinic, aggressively soliciting me for their surgery. I couldn't understand how I merited such keen interest. The fact that I received numerous calls from a key member of the staff was remarkable, given the fact that doctors are generally inaccessible. What perturbed me was the fact that he strongly discouraged me from considering any form of radiotherapy, going so far in very explicit language as suggesting that this Dr. is a "scam artist" or that "FSR is a sham," etc.

It soon became clear to me that this clinic was trying to protect its financial interests, even it meant speaking to me in a manner that I deemed to be medically unethical... the idea of one doctor bashing the other, etc. It became clear to me that the medical profession is a business and as such, there are very clear economic motivations for surgeons to do surgery, etc. If there is an opportunity to "pursue an order", then people in the medical community tend to be aggressive, just as I do in my own business!

The most difficult and frustrating aspect with the process that followed the diagnosis was the conflicting information that was communicated to me by the medical community. I went through a very thorough process of investigation to determine what was best for me -- after all it was my brain that was involved. I felt like I was getting banged around -- I consulted with a few surgeons, who view the world through a scalpel. It became a question, then, as to the surgical path -- suboccipital or trans labyrinth. Back and forth, I went until, finally, I discovered Dr. Jeff Williams.

When I met with Dr. Williams at Hopkins, it was like a breath of fresh air. Dr. Williams was the only doc that I spoke to who could make a totally unbiased, unprejudiced evaluation of my case, without his ego getting in the way, without criticizing or bashing any other people in the country, and without being driven by financial incentive. Given his credentials (the only MD in the country with board certification in both neurosurgery and radiation oncology), I knew immediately that I had come to the right guy, backed by a world class academic, research based, institution. Not only a brilliant technician, but what impressed me was the fact that he really cared about his work. He took the time to answer all of our questions. He was kind and reassuring -- a real gentleman. The notion that a doc of this calibre didn't come across to me like an egomaniac was extraordinary, and please excuse me for generalizing!

Dr. Williams indicated that I was a candidate for his protocol of stereotactic radiosurgery and explained it to me in great detail, as well as details of the surgery. We spoke about upside and downside risks, etc. My wife and I, finally, were able to make an educated and informed decision after we met with Dr. Williams, and thankfully, opted to follow up at Johns Hopkins a few weeks later with FSR.(completed on August 9th, 2000).

When I was told that I qualified for the Hopkins protocol, FSR, I jumped with joy. The treatments were painless, tolerable, easy -- everything went smoothly. Dr. Williams and his staff are true professionals -- and moreover, they are kind and sensitive human beings who care, first and foremost, about their patients, without letting their egos get in their way...

To any patient recently diagnosed.

Good luck in your evaluation process. Don't panic! Be grateful that this is a non-malignant tumor and recognize that you have the luxury of time to research and check out your options and make an informed and educated decision.

The problem with the medical profession is that there are some physicians who have their own agendas to satisfy. My sense is that the economic motivations sometimes taint the process, at the expense of the patient and his/her best interest. It seems that doctors tend to protect their territories, sometimes without consideration to the patient himself. There is no reason why a patient/consumer, has to be beaten around at a time when he/she is under a great deal of anxiety, stress, and fear. There is no reason why the primary care doctor or ENT that makes the diagnosis can't OPENLY discuss and disclose to the patient all of the treatment options, names and places to pursue and consider surgery and/or radiotherapy.

Unfortunately, when all is said and done, if one has a problem that does not have a definitive course of treatment, it is the patient that has to be his/her own advocate. Thankfully, I, with the help of members of my family, went through a systematic process -- learning about all of the options available for AN treatment, speaking to people in the medical community that we knew,  studying (in the internet amongst other places) every piece of material that we could get our hands on.

I would gladly speak or respond to the emails of any newly diagnosed AN patients. After the anxiety and confusion that I was subjected to, I believe that I could be of real assistance to a new patient. I think that I could impart to you a great deal of my own knowledge and experience!

By the way, I had my first 6 month MRI/audiogram just last week. The MRI indicated clearly that the AN is responding to the FSR. The core of the tumor,in the film, shows a darkening effect which suggests that the tumor has begun to die. Predictably, when I have the next MRI in 6 months, there will be signs of tumor shrinkage. Also, my hearing is exactly as it was 6 months ago -- no further impairment. Thank goodness that there is a Jeff Williams, and I am sure other top people in other parts of the country that will take good care of you!

Daniel J. Fox <Foxoutdoor AT aol.com>
February 2001

©

Last Edited: Wednesday, October 30, 2002