Thank God for a Surgeon with Integrity
Bill Lively's story
We patients must become informed and make our decisions from an informed position. For example, we need to realize that just because a particular treatment is the accepted practice of the day does not mean it is the best practice ... At one time bleeding was the practice of the day ... and it was not a beneficial one. When I was a kid people with ulcers were treated with the standard practice of the day, and we now know it was a wrong practice. To say this is the "standard practice of the day," does not mean it is the best treatment method, only that it is the one most often used.
When I was exploring options, I always took a notebook along and took notes. I also always ask for a copy of the doctor's report. These reports were always provided ... no arugments, no questions as to why I needed to know ... geez, it was/is my head ... who has a better need to know. Also, why rush with only one MRI when something like 40% of all AN's just stop growing on their own?
I was very fortunate in the doctors I saw after my diagnosis. My neurosurgeon, Dr. Clifford Soloman, said at my first appointment, "Bill, I won't touch you until we find out if this thing is growing. We have a first MRI and can use it as a baseline. In three months, have another, and we will see if it is growing."
I had the 3 month MRI and it showed no growth. He suggested I wait a year before having another. I was uncomfortable with that length of time and suggested 6 months. He agreed. I had the 3rd MRI 6 months later, and volume-wise it was a significant growth. We agreed it was time to do something. At that session he said, "If I were you, I would go see Jeffrey Williams and see if you meet his criteria for FSR."
I made an appointment with Dr. Williams and did fit his protocol and underwent FSR at Hopkins last September. If I had not met Dr. Williams' protocol, I would have used Dr. Soloman as my surgeon. His office is in Annapolis, MD and he operates at Johns Hopkins also. Dr. Soloman really believes in "use the small gun first. If that doesn't work, use the big gun."
My AN was 13mm x 7mm x 7mm at the time of treatment, intracanallicular. At my six month checkup, surrounding normal tissue showed no damage from radiation. Fortunately I experienced no additional hearing loss after FSR, no facial nerve damage ... no side effects of any kind.
I thank God for my surgeon, that he had the ethics and integrity to be careful and concerned with my health. I agree that many doctors give bad advice from having not kept up with their fast moving field. People do recommend what they know best ... this is only natural and to be expected. Regardless, bad advice costs patients greatly and there is really no excuse for ignorance by doctors.
My wife had a shoulder problem and ended up going to a variety of specialists. Each recommended a treatment from their speciality and played down that which others had suggested. So, for surgeons who know surgery best it is to be expected that the majority will recommend surgery ... Finally my spouse diagnosed her ailment and made her view and treatment recommendation to our primary doctor. He checked and agreed with her ... What does all this says, do your own research.
Just had my one-year post-FSR checkup ... have had one each 3 months since last Sept. The tumor is smaller and definitely dying. No side effects at all, during the treatments or since then. Hope this continues ... and I'm quite confident it will.
(4/99) I just had my 18 month follow-up MRI. The MRI shows the tumor is definitely dying and that there is no damage to the normal tissue surrounding the tumor. Also, my balance is better than before and shortly after the FSR treatments.
(9/00) Currently my wife Nancy and I are spending an extended length of time in Xian, China. We spent the summer editing papers that are to be presented at an International conference on Project Management, October 3 to 6 here in Xian.... I will head home in late October. Nancy is staying in Xian until February. She is taking a class in Chinese and is teaching a writing class at the university where we are living.... I will miss my regular Sept. check-up with Dr. Williams at Hopkins. I e-mailed him and I will see him in November. I anticipate no problems. Sept. is the third anniversary of my FSR at Hopkins. So far, Dr. Williams says, Bill, you are a textbook case. Lets hope it stays that way.©
Back to Bill's entry in the AN Patient Directory
Last Edited: Wednesday, October 30, 2002