The Struggle for Information
At the top of the Archive, we give the following advice: "You must see the direct provider of each type of treatment, have each one give you their statistics and their expectations for your outcome, then make up your mind yourself". We consider this advice to be the "mantra" for informed AN patients.
This page provides numerous testimonials from patients, underscoring the importance of this advice. In addition, we recommend reading Louis' story. Louis is a physician who became an AN patient, and had to learn about his options like we all do. What he found out is that most of his colleagues were giving him wrong advice!
(the italics and links are ours)
I find disturbing the fact that some people may be too quick to a decision, and totally trust what their respective doctors tell them without very much questioning. I discovered during my investigations that many people who had surgery regret they didn't consider radiation more closely. In my case, I had three different surgeons recommend three different surgical procedures... none of them were aware of what is going on with FSR and GK... My fear for those patients early in diagnosis is that they will just do what was recommended initially.
The neurologist, a neurosurgeon and a neurosurgeon consultant all tried to talk my husband into surgery and ALL of them minimized secondary damage. When pushed: "well yes you'll likely lose some or all of your hearing, and maybe have some facial paralysis, but at least you'll know it right away." All of our local physicians said that radiation was not appropriate. But, it became clear that most of them knew nothing really about it, and were asserting "facts" about hearing loss and regrowth as though they knew. None of them even knew what FSR really was. Well, so far as my research goes, NONE of the Johns Hopkins FSR people have lost most of their hearing (if they had it before treatment) or had any increase in other symptoms even years after surgery.
The ENT doctor sent my wife to a neurosurgeon. He explained the surgery procedure and said it was the only option. We had learned about Gamma Knife (GK) and Fractionated Stereotactic Radiosurgery (FSR) from searching the Internet. We asked him if he could talk to us about those treatments. He got very upset, said that is for people who refuse to have surgery and is not curative. He then turned and just walked out of the examining room. His assistant came in a few minutes later and said if we wanted to schedule the surgery to call for an appointment... Our research has been intense since then... Surgery was ruled out [and we have] narrowed it down to GK and FSR.
When my ENT doctor informed me of [my 2.5 cm AN], he recommended 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. [A staff member of that institutuion] 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. 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. My wife and I, finally, were able to make an educated and informed decision, and thankfully, opted for FSR. I had my 6-month MRI/audiogram just last week... I understood that medicine is a business, and if there is an opportunity to "pursue an order", than people in the medical community tend to be aggressive, just as I do in my own business!
I had a tumor (medium-sized: 2.4-cm) against the pons and cerebellum However, my speech discrimination score was 100%. The ENT referred me to a neurotologist and neurosurgeon in Atlanta... They were nice enough and seemed very competent and they quickly and almost totally convinced me to forget the radiation options due to the danger of either not destroying the entire tumor or accidentally damaging the adjacent brainstem... microsurgery with the translabyrinthine approach was the only way. We scheduled the surgery in spite of my fears... Then I decided to explore the options further. I cancelled the surgery and and opted for FSR with Dr. Williams... 18 months post-FSR, the hearing seems unchanged.
Given the universal belief that medical professionals are up to speed in their profession, it was disconcerting to engage my ENT and then a neurosurgeon in discussion about FSR. Neither had heard of it or so they said... My ENT was outraged that I actually considered treatment other than surgery.
A newly diagnosed AN patient should have all his or her, options explained to them, in order to make an informed decision. The first five neurosurgeons we consulted told us [my wife] had no choice, microsurgery was the only way to go and it should be done the following week... The choice between microsurgery and radiosurgery or radiotherepy should be the patient's choice. In our case, she has completed her twenty five Peacock treatments with no side effects and no loss of hearing, no facial disfigurement and not one day spent in the hospital. How many microsurgery patients can say the same?
I was told that surgery is the only way to go... Then I read everything that I could find and I even borrowed 2 volumes of ENT Clinics of North America from the medical library that had reviewed all aspects of AN therapy. After reading those papers, I learned that the surgical results, more or less, are LOUSY. The more research I did, the less appealing the thought of microsugery was to me. After reviewing everything, I've decided to watch and wait. If and when I decide to do something it will almost certainly be FSR. If I wasn't a physician, I almost certainly would have been talked into surgery by now. Being able to find and investigate all of the data myself has been a huge help.
Our local ANA chapter did not give us any literature on radiation. In fact, the president wasn't too helpful on the subject of radiation. She thought [my husband] was over the edge to even consider that an option. We got a pamphlet finally from the national organization and some info from the Brain Tumor Society.
I was called to see the ENT Consultant in June 1997... "You've got an Acoustic Neuroma, it's not malignant, but it will have to come out or you will die." At the second consultation, I received more details of the operation and this time, its short and long term side effects. I was horrified, both by what I heard about side effects and by the fact that a perfect ear would be destroyed to get at this tumor. I was assured that the only alternative was slow death... The surgeon said: "You may just hear about some radiotherapy treatment, it would be absolutely criminal to treat you with radiotherapy." Well, I left the hospital to put my life in order before the horrific day arrived. I knew I could trust the doctor and just waited... Then, I received a frantic phone call from my parents; by chance they had heard a 5 minute BBC radio talk about a new treatment for ANs, called Fractionated Stereotactic Radiotherapy (FSR). I have to say that, at this point, I was very half-hearted about it. I was facing up to surgery; there are no miracle cures, if it seems too good to be true, it probably is, doctor knows best, etc. Anyway, I corresponded with patients, I visited web sites, I investigated Gamma Knife and did all the other research I should have done months before. I discovered that I had not been told the truth - had I been lied to? In some ways this was the most difficult time - if you think there is no choice, you can shrink back in your shell and await the unpleasant inevitable...
My AN was diagnosed by an ENT, who referred me to the "best AN surgeon in Houston". The ENT started right off with the assumption that surgery was the only option. This surgeon had absolutely nothing good to say about radiation treatments, and essentially tried to pressure me into surgery. He said he would never consider radiation treatments for himself. He gave me a 30% chance of some facial nerve damage from surgery, and a guarantee of 100% hearing loss (he would only consider the translab approach). It was only due to my research on the Internet, and my personal insistence on consulting with other specialists that I learned about and was able to choose the treatment that I had. If I had been less assertive and lacked access to the Internet, I would have undoubtedly undergone the surgery, not knowing there was any alternative. I feel certain that my parents would not have dared question the "expert" opinion like I did (years ago you trusted your doctors completely).
I had my Gamma Knife procedure in Jan'95 at Presbyterian Hosp., Pittsburgh. I have had no side effects whatsoever. My hearing was at 92% discrimination at the time of my last exam, 1 yr. ago. My MRIs show that the tumor which was 2cm has necrosed (lost the blood supply) and is shrinking. I'm a happy camper. The doctors in Columbus Ohio who told me that I had to have surgery and that I had no options, rue the day. Not only did I challenge their opinions, but I went on channel 6 News in a 2 day mini series discussing Gamma Knife and the importance of patient empowerment.
My own personal experience in choosing radiation I felt I had to maintain extreme perseverance. The world was against me. And what conflicting information! Glad I fought the fight.
The information pertaining to radiation types treatment that I received from the surgeon was "one blast of radiation hits the tumor (wrong) and the tumor explodes leaving particles of tumor in the cranium that may grow back because they were not destroyed (wrong). Then these particles may reattach to the nerve and grow another tumor. After the growth of a second tumor it is an impossibility to radiate the second time and surgery would be the only possible way to remove the second tumor. (wrong) When the surgeon would go in to remove this second tumor, because of all the scar tissue caused by the high dosed radiation blast, his job would be much more difficult because the tumor attaches itself to scar tissue which has embedded itself into the nerve. Because of the delicacy of this regrowth, the patient has a higher probability of side effects, and the surgeon will have to operate in a highly radiated area." (wrong) He also said "the procedures had not been practiced long enough to know if the patient would not develop cancer in the distant future." This simply is not the truth today!
When I was first diagnosed in '94 a celebrated "top-neurosurgeon" in Germany wanted to operate at once, never mentioned alternatives, never mentioned that hearing would then be dead on the affected side. Luckily I was skeptical.
I saw Dr. <name deleted> a couple of years ago and he was very anxious to get me into surgery. I had a 4mm tumor at the time and decided to just watch and see. It has not grown. My hearing is a little worse and I have some ringing in my ear, but am living comfortably with both. I have done a lot of research and will continue to wait and see. I have a MRI every 6 months. When the tumor shows growth, I will go to New York for FSR.
I spoke to my ENT today and told him I wanted to explore the idea of having radiosurgery. His answer to me was that we don't have that in <city deleted> and that he had already spoken to a surgeon about me and thinks I should see him.
After much reading, research, and talking to doctors, I have decided to undergo fractionated stereotactic radiosurgery at Columbia Spring Branch Hospital here in Houston. I have decided that the incidence of complications from surgery is still too high to take the risk at this point. I also still have fair hearing, and would like to preserve that. The surgeon I contacted essentially guaranteed total hearing loss on that side. Radiation also does not preclude surgery later if control is not achieved. The approach I have chosen delivers more radiation than Gamma Knife to improve control, but is spread over 3 sessions to minimize side effects. My advice to others is study a lot, use the net to make lots of contacts, and become an informed patient. This has been my first medical experience where doctors have flat contradicted each other, leaving me to make the final decision on the best treatment.
I would not have investigated radiosurgery had I relied upon what the conventional neurosurgeons told me. I found out about it almost by accident and did a great deal of research on my own before making a decision.
When I was first diagnosed I saw Drs. from the House Ear Institute to UCSF. Well respected surgeons. I was scared to death not to obey their recommendations but I just could not feel the urgency to proceed with surgery. I wish [I had someone to talk to] at the time I was searching for alternatives to reassure me that the "path less chosen" was not death dealing! On the other hand, since I was all alone, I had to be thorough in my research and thereby I came to better understand the procedure I chose. After much research I chose to be treated at Loma Linda University Medical Center with the Proton Beam. I had 30 fractionated treatments... I am doing just fine.
I had been trying to find out alternative methods instead of surgery for months and could not get a hold of much information except from others on the AN list and a few other individuals whom I have made contact with through the online ANA guest book etc. I have encountered the same attitude from surgeons that <name omitted> talks about, from at least five of them, with no offering of alternatives. Now I know there are other alternatives out there, I do feel insulted and offended that I was not given alternative information from the surgeons. As a scenario, if I am going to have my leg amputated I would like to know that there may be other methods of saving it before they cut it off!!
I had my AN removed on April 30th 1992. Don't ask me what size it was because I never bothered to ask the surgeon. I only went to the one surgeon after my ENT diagnosed the tumor. I just accepted the fact that it had to come out. I did not do any research as you smart ones are now doing! I was too trusting at the time! I totally lost my hearing in the affected ear, had and still have some slight dizziness, get occasional headaches, and really nasty neck pains. So do yourself a favor and check out the other options like Fractionated stereotactic radiotreatment, gamma knife, whatever. Had I known then what I know now, I would have taken one of those routes!
I had fractionated stereotactic radiosurgery (Peacock) a year ago (in Mar'96) for a 1cm AN. Now after two follow-up MRIs and an audiogram, the procedure appears to be a success. I am very happy that I investigated alternatives to surgery. Initially, the neurosurgeons I spoke with dismissed radiation as a viable method of treatment. I still have 100% of my hearing and did not suffer any nerve damage.
I chose FSR; I made this choice against the advice of the surgeons and neuro-otologists I consulted... Just after my diagnosis last May, I almost rushed into a surgical solution without considering all the options available to me. In fact, the only thing that kept me from dashing into the OR still fresh with the shock of my diagnosis was the fact that the neuro-otologist my ENT recommended was on maternity leave!
A 1995 scan confirmed that I had an Acoustic Neuroma, at that time 8 mm in diameter... All the doctors I saw from then on talked of surgery as the only solution, and the surgeons I spoke to wanted to operate at once. NO ONE EVER MENTIONED THAT THERE ARE NON-SURGICAL ALTERNATIVES !! Certainly not the surgeons. Luckily I have a healthy skepticism. I rejected surgery for the moment and adopted a wait-and see-and learn attitude. I knew that ANs are non malignant, that they are very slow growing, that I had the luxury of time to study and then decide... In February of 1998, after careful analysis, I decided on FSR, even if I had to fly halfway around the world to get it done.
Although it's vehemently denied, I do believe there is a feeling among AN surgery survivors that those of us who chose radio surgery "haven't suffered enough" or "haven't really gone through the experience." I can only say that seven months of researching treatment options on my own, all the while knowing that a tumor was growing in my head, was anguish enough for yours truly. And it's interesting that other than the surgeons themselves, all other medical professionals I consulted, including my family GP, my local audiologist and my dentist (who includes among his patients an AN surgery survivor with facial paralysis), supported my decision to go with FSR.
I have been researching this for more than 15 months, FSR seems to be the ultimate option so far... My Doctor has written a strong letter recommending not to have the FSR, as it can turn the tumor cancerous...which I have not been able to substantiate, and no other doctor I have talked to can point to a single instance of a FSR patients tumor developing cancer there...
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.
Throughout the decision-making period (in 1990) we found no physicians or neurosurgeons who were not aghast over our decision to try radiosurgery. But having read the original literature on radiosurgery and compared the surgical aproach, we had to come to our own decision that radiosurgery was best.
The way I learned about an alternative to surgery was through the AN mailing list. A person told me to check out the alternative like GK which she had. I would not have known about this option if she had not told me about it. My surgeon did not tell me about another alternative. I am so thankful for this list.
I have been told by surgeons that surgery was my only recourse and should be done immediately. I have scheduled visits to several Surgeons for discussions over the next week in locations all across the United States. Now I feel somewhat deceived and yet a bit of jubilation at the possibility of an alternative.
I had surgery in August of 1996 using the middle fossa approach. While some of my hearing was preserved, I was left with partial facial palsy, eye problems, and many other side effects. And each year since, the MRI has shown what both my surgeon and another neurologist (who treats my headaches which seem to be unrelated) have called "either scar tissue or tumor fragment." I find the latter very distressing at times, since I had such a difficult time post-surgery and dread the thought of regrowth... In 1996 there wasn't even a mention of radiation when my tumor was diagnosed, I was only offered surgery. In hindsight, I don't think I would do it again if it could be avoided.©
Last Edited: Saturday, November 15, 2003