Treated by Radiosurgeory at age 14
Debie Aniol (for son Ben)
Our son was diagnosed a 10mm AN tumor in May 1996. He was 13 years old at the time.
Ben had complained off and on of tinitus, and he would occasionally sleep through his alarm. One morning he slept through the alarm again. I was taking his older sister in for a recheck after treatment of an ear infection, so I took Ben in and asked them to check his ears. They told me there was no sign of infection, but he appeared to be deaf in one ear, and they recommended he see an ENT. 6 months later we had a diagnosis of AN.
At first we were 'wait and watchers' but then one of the MRI's showed some growth. The otolaryngologist that we had been seeing really recommended surgery without delay. We had been researching radiosurgery, and finally decided to go with that treatment instead of surgery. It was a long, winding road from there to here and you can never have too much information to work with.
We had our son treated with FSR July 22, 1997. Ben was treated by Drs. Hall (neurosurgeon) and Cho (radiation oncology) at the University Hospital in Minneapolis. The referral was made by Dr. Wascher, in Appleton, WI, and we have been seeing him since.
Originally, the insurance company refused to pay a huge chunk of the bill because the hospital billed us for multiple charges of "radiosurgery". They said that because of their rule against multiple surgeries they will only pay part of the bill.
Ben had his first follow-up MRI 6 months after the FSR. There appeared to be some slight enlargement, which Dr Wascher felt was due to inflamation. To be safe, another MRI was scheduled in 3 months. That one showed slight decrease and definite darkening of the tumor. 6 months later (10/98) another MRI showed more darkening, but no further decrease in size. Ben is scheduled for his next MRI on June 1, 1999, with a follow-up visit with Dr Wascher on June 9.
For the most part I feel confident that we made the right choice. But there are times when I have doubts. I wonder sometimes if we should have done even more research into the different types of radiation treatment. The otolaryngologist was very concerned about the possibility of secondary tumors years down the road, and even though my research indicates that there is not a great risk of that, I still occasionally catch myself looking at him and thinking that if that ever happened, it would be hard to forgive myself.
I continue to research this condition and this type of treatment. I live in Wisconsin and I will be attending the ANA Symposium in Milwaukee. My son won't because he is a typical 16 year old and prefers to live life, not think about this thing in his head. I guess that is my job, for the time being anyway.
(7/99) I would like to make a correction in the information about Ben in the patient directory. He did not have fractionated, but had one shot radiosurgery, on the Linac.... Although in hindsight I wish we had researched much more, I am still glad that we choose radiation instead of surgery. And if the need should ever arise that Ben would need further treatment, I intend to take him to Dr. Andrews from Thomas Jefferson University Hospital for Fractionated Stereotactic Radiosurgery.
I wish that there was some way to really impress on everyone who is diagnosed with this tumor that surgery is not a cure! One of the main concerns of probably 95% of all in attendance at the ANA symposium last month was recurrence of the tumor! Either way, microsurgery or radiosurgery, you have to monitor your condition pretty much for the rest of your life.
Debie Aniol <maniol AT worldnet.att.net>
To Debie's entry in the Patient Directory
Last Edited: Wednesday, October 30, 2002