Saved by an Exchange Student
I feel that everyone today needs to know that there are options. Seven months ago (August, 1997), three surgeons gave me the same story - my only option was surgery. My AN is on the high side of small (1.4 x 1.0 cm), not at the brain stem and yet I was advised to proceed to surgery as soon as possible, so much so that I became very frightened, especially as we were having an exchange student from Spain arriving in four weeks to stay for at least four weeks.
I finally called one surgeon and asked him how serious was my situation, could it wait until after the student had gone home. He advised me, rather haltingly, that it was not that critical at this time and to go ahead with my plans. I was then called by his office about 8 weeks later, wanting to know when I wanted to schedule surgery. I asked all three neuro-otologists what other options were available: I suggested (before I had done any research) were there tumor shrinking drugs, radiation treatments (this was before I knew about FSR options) and they told me there was nothing out there. They never mentioned gamma knife, proton beam, etc. It was only through my own dogged research and refusal to accept opinions from all people without thinking about things myself, that I decided to wait and see and research some more. I took days and days off work in September 1997 so that I could stay at home and search the internet.
I set surgery twice, one with a local surgeon (I am in St. Louis) and once with the famous House Clinic in Los Angeles where they have done thousands. I cancelled both because I wanted to investigate the radiosurgery that others were talking about. My second MRI 7 months later showed no change so I am still waiting.
I hope that the newly diagnosed AN patients will investigate for themselves what they really want to do. Their choice, is their choice for no matter no reasons, but I wish that everyone has the ability to know about all choices and to decide for themselves. I would hate to think that someone would proceed to any solution today, be it surgery or FSR without any knowledge whatsoever of other options, whether they be approved by surgeons or anyone.
I want to know about holistic alternatives, tumor shrinking drug possibilities, radiation possibilities, vitamin therapy etc., anything at all that would give me the opportunity to get rid of my AN in the most successful manner, with the best long-term result and the least amount of pain and incapacity involved.
I am still perturbed by a statement made to me by a neurotologist only three or four weeks when I visited with him to read my second MRI and I told him that I would "wait and see" some more. He was rather frustrated that I would not proceed to surgery and was a little angry with me that I would not take his advice. He relayed to me a story about a young man (early 30s), a patient of his whom he had just operated on with a very small 3mm AN and he had had to remove the facial nerve because it was so damaged. His reasoning in relaying to me the story was to pressure me into "moving fast" so that this may not happen to me, even though my circumstances are different. (He had lost all hearing - but still now has severe facial damage). I was furious and am still upset that he attempted to resort to a scare tactics to convince me to proceed with surgery.
My motto is with ANs today, now, 1998, is to find out as much as you can about everything and apply it to your situation and make your best decision, not from fear or bullying or lack or knowledge of other methods, but do the best your can with all the resources available to us today.
(1/99) My last hearing test showed barely any change. As for the MRI, the surgeon immediatley said "wow, look at this huge amount of growth" because the second radiologist had measured it at 1.6 cm whereas the first was 1.4 cm. It turned out he was way off. Dr. Brackmann told me there had been no change between the first and the second when I sent him my copies. When confronting the radiologists, they admitted there was no change between the two, just the different interpretations of the two different radiologists (at the same facility!!)... Anyway, there has not been any change in 18 months.
(5/99) Today I saw again a neurotologist whom I saw almost two years ago when first diagnosed with my AN. I went to see him to get his opinion on whether my MRIs were truly "unchanged" since the first one and to also find out his opinions regarding various items on my list. I found him very receptive to my opinions and decisions and very positive about my decision for myself. He actually said "if I was in your position I would do exactly the same thing" without me asking him that question myself!!! He said he had quite a few patients right now who were doing as I was doing, waiting and watching. For those of us with few symptoms, small to medium ANs and good hearing, he felt there was nothing else to do but wait and watch. He recommended another MRI in 9-12 months, likewise a hearing test unless I felt that changes developed, and wished me well and to see him again in 12 months. He also mentioned he had a few patients whose ANs had not changed in years and some of his older patients he felt would go on to old age without having any change in size.
I mentioned to him that I would not have surgery in the future for my AN, and that if a decision was to be made I would have radiosurgery. He said he was aware of all the new options that were out there throughout the country, and he felt that his job as a neurosurgeon for ANs would be replaced in the not too distant future by radiosurgery!!! and other options such as tumor shrinking drugs which may prove positive for the future also. I was thrilled to find a surgeon who is receptive to the fact that there is other treatments out there that are effective for acoustic neuromas and to find such a person who is considerate, willing to listen and supportive of my own decision.
(3/00) MY AN HAS NOT CHANGED IN SIZE SINCE MY DIAGNOSIS IN AUGUST 1997, 2-1/2 YEARS AGO. My neurotologist tells me he now has many patients who are opting not to proceed with any treatment and are watching their ANs for any changes. He says many of these patients have shown no growth over years, and a few have even reduced by themselves without treatment!
(8/00) In this month's "ANA Notes", a letter was published from me regarding waiting and watching... I have received so many telephone calls from others around the country who read my letter and had not been given information by their doctors regarding this "third option" and were thrilled to hear that there are many of us out there doing the same thing. Since there have been many patients with ANs who are now waiting and watching there has been quite a lot of evidence to show that a lot of ANs do not grow over time, and perhaps the future will show even more. Of course, those patients with large or troublesome ANs may not be able to do so, but there are many patients with small troublefree ANs who may just wish to choose this third option.
(2/01) Had my annual MRI last week, no change at all since the first one in 1997. It is interesting that this radiologist defined yet another dimension (very close) from the first one and the second one, but all MRIs since the first have stated "there is absolutely no change since the last MRI".
I must say I am thrilled that there has been no change, and my neurotologist tells me we are on the "cutting edge" of this philosophy because 10 years ago there were no real "wait and watchers" and that watching many of these ANs may show no growth at all over years in many, many of them. He stated he has about 40 patients who are in the "wait and watch" mode, those with small/medium ANs not causing any problems and not changing hearing.©
To Lynne's entry in the Patent Directory
Last Edited: Wednesday, October 30, 2002