take my AN with me
After seeing my ENT for several years because of a gradual loss in hearing in my left ear, around the July 4th weekend in l994, while driving home from Lake Tahoe to the East Bay in San Francisco, I developed a strange numbness on the left side of my tongue. When I stopped off for lunch, I had trouble eating because of the tongue numbness. I contacted my ENT after I returned home although the numbness subsided to a large extent. The ENT sent me for an MRI and it was found that I had an AN that was 28x20x20mm.
Never having heard of an Acoustic Neuroma before this, I went from Walnut Creek, CA where I live to Los Angeles to the House Ear Clinic which my ENT told me was the best anywhere as far as he was concerned. I saw Dr. Brackmann. He suggested surgery but being in the midst of trying to sell my interest in a business and being 67, I wasn't about to rush into this. Dr. Brackmann agreed that I could postpone any surgery for about 6 months. When I asked about the Gamma Knife I was told that my AN was too big to consider the GK. I had an MRI every 6 months for the next year and a half and went to UCSF and saw Dr. Jackler. There was and is not too much difference between the approach of either Brackmann or Jackler, both felt I seriously consider surgery.
I had my last MRI in Dec. 1997. My AN has grown very little, to about 3cm since July, 1994. Every once in a while I do get reminders of my AN when the left side of my tongue hurts and/or some pain in my left ear and some mild tinnitus from time to time. These problems pass and I try to forget about the AN. I have found that by using a hearing aid in certain situations, i.e., crowded noisy restaurants, cocktail parties, large meetings with speakers, etc.my hearing is greatly improved. Most of the time I do not use a hearing aid.
I read about Dr. Adler at Stanford and FSR in a local newspaper and went to see him in late Jan. 1998. I was not impressed with the fact that I asked Dr. Adler to provide me with information about his success rate with FSR for AN and names of "happy customers" and got very little if any information. I then went back to see both Drs. Brackmann and Jackler and got two opinions that were basically the same. They both felt that since my AN is growing very slowly if at all at this time and that I am now past 70 and that I only have a modest hearing problem and some minor tinnitus from time that I should not have surgery but continue to monitor. When I asked about FSR both did not feel that I should consider this as an option at this time in my particular case.
I discovered Anaemail@example.com (a mailing list for AN patients) around March '98 and have learned a lot more about FSR and there are probably a lot better places than Stanford for FSR. In summation, I will have known of my AN for four years in July. I am a member of the ANA and have attended meetings in San Jose and even had one meeting at my home. I have met many wonderful people who have had surgery. If I can possibly avoid surgery, I will. If FSR is what it is cracked up to be, it would appear that the longer I wait, the better FSR will get. At my age, I may take my AN with me. Both my parents lived to 91.
If you have any questions regarding my story, please contact me directly at firstname.lastname@example.org or call me at 925-933-2048.
(12/98) I had another MRI on 11/17/98. The AN measured 30x20x20, which is not much different from when I first found out in July, 1994, that I had an AN. I had some symptoms since writing my story that lasted longer than usual, i.e. the tongue having pain on the left side, trouble with swallowing and some ear ache in the left ear. They seem to have gone away. My hearing in my left ear remains about the same also.
I am being followed by Dr. Jackler. I know that Dr. Jackler is no great fan of radiosurgery, but having seen him since 1994, I feel that he has "mellowed" in his approach, at least he has with me. I find that he isn't suggesting surgery to me as he had previously. At 71, I still would like to take my AN with me, and avoid any treatment at all if I can.
(12/99) I am still a Wait & Watch person. The good news is that I had my annual MRI on 12/3/99, and there are "NO NEW FINDINGS OF SIGNIFICANCE OR SIGNIFICANT CHANGE FROM PRIOR EXAM AND REPORT OF 11/17/98". My AN has remained approximately 30x20x20 since it was first discovered and my hearing on my left ear remains about the same. I consider myself a very lucky guy and glad that I did not listen to the Drs. when I was first confronted with an AN.
(12/00) I had my annual MRI by the same radiologist with the same equipment that was used back in 1994.The findings are : "Left acoustic neuroma, unchanged from prior exams and reports. No new findings of significance". At 73, I still hope to take my AN with me to my maker. If anything, I am less conscious of the AN then I was in the past. I am fortunate that I did not follow what the surgeons wanted me to do, i.e., OPERATE !
(12/01) The same radiologist and equipment has been used since 1994 to measure my AN. According to my latest MRI, as of 12/19/01, the measurements are : 24.7 length, 26.1 mm width , and 12.3 mm depth. My previous measurements on 11/17/98, which were about the same going back to July, 1994, were 30.1mm length, 30.6mm, width and 20.3 mm, depth. As you can see, I have much cause for celebration as my AN has apparently shrunk! And to think that the surgeons were ready "to cut" back in 1994. I am very lucky to have chosen to Wait & Watch over these 7 years. I was 74 on Sept. 30th and I still look forward to taking my AN with me.
(1/03) Once again on 12/17/02, I had my annual MRI with the same Radiologist and the same equipment. I have been going here for this procedure since 1994. The MRI is done with and without Gadolinium. The Doctor's report states, "No new findings of significance or significant change from prior exam and report of 12/19/01". My hearing remains about the same and the AN causes me no problems. I plan to be a Wait & Watcher for a long time to come.
(3/05) I just took another annual MRI on 3/21/05. The MRI's in both instances was taken with and without Gadolinium. It is now over 10 years that my Acoustic Neuroma was diagnosed and my hearing is still good and I am still a Wait & Watcher. The AN has not grown and may have actually shrunk a bit. I will be 78 in Sept. of 2005 and I think that I will not take any more MRI's. "My story" may not be typical but before anyone rushes out to have surgery, etc. on a newly discovered AN, make sure to get the best medical advise and do not put your trust in just one Doctor
Back to Barney's entry in the Patient Directory
Last Edited: Wednesday, April 06, 2005