Investigating all of the data myself
1. The Diagnosis
My name is Louis and I am a physician in New Jersey in my mid-30's.
I first noticed a hearing loss in mid December 1996. At the time I had a bad head cold and it felt like I was just badly congested. The cold finally got better after about 3 weeks, but my ears still felt clogged. As I've always had bad allergies, I still thought it was just congestion. I casually consulted with physician friends of mine who suggested various remedies to no avail. I basically could not use the phone with my left ear and in a noisy room I could not hear well to my left. Other than that I was just fine. I finally concluded that it must just be a post-viral hearing loss and thought nothing more of it.
In November 1998, I happened to talk to a friend of mine who is an ENT. He recommended that I at least have an audiogram, which I did. This showed a very strange notch hearing loss only at 1500 hz. Based upon this, it was decided that I should have an evoked potential study (ABR), but since the symptoms so correlated with my viral infection, I was sure that the results would be normal.
The ABR was done in mid December, and low and behold it showed significant signal distortion on my left VIIIth cranial nerve. I was very concerned about this, but as my wife and I were going on vacation three days later I was told not to worry, I should just have an MRI when I got back. I did try to not worry, and I kept telling myself that I've had the symptoms for over 2 years and did nothing, so why panic now?
Well, we had a very nice trip and two weeks after getting home I had my MRI on January 15, 1999. After the MRI I saw one of the radiology residents that I knew and he told me they should have the results in about an hour and that he would page me. Well, one hour became 4 1/2 hours and was starting to get a queasy feeling in my stomach. Surely if it was good news he'd have called me immediately. I finally called the MRI facility at 6:30pm and asked to speak to the radiologist myself. He then apologized for keeping me waiting, but he wanted the head neuroradiologist to look at films before telling me anything. Unfortunately, he said, there "was an enhancing lesion in the left internal auditory canal (7x13mm) consistent with an acoustic schwannoma [neuroma]".
Well, that was some bit of news to digest... While I knew the ABR was abnormal, I still felt sure that this would be a post-viral syndrome. The reality of having a tumor just hit me like a blow to the solar plexus.
2. Investigating the options
As a physician, I had heard of acoustic neuromas, but as they are not terribly common, you don't learn too much about them in medical school. I immediately started looking in all of my medical textbooks, but there was just not too much there. My friend the ENT came over to my house that night to make sure that I was OK, and when I asked, he started telling me about the different surgical approaches and that I should probably see someone soon. He gave me the names of a few doctors he had trained with in New York City and told me to call him with any questions.
Well, that night I surfed the internet like never before looking for all of the information that I could find and I immediately found this site [the AN Archive]. At first I didn't know what to think of it, as it seemed pretty biased against microsurgery and my friend assured me that surgery was the way to go. Anyway, over that weekend 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 why this site presents a heavy radiotherapy angle; the surgical results, more or less, are LOUSY. Even in the best case scenario and in the best of hands (I'm talking about data from Jackler, Cohen, and Brackman) there is AT LEAST a 40% chance of total deafness in the operated upon ear even with the middle fossa approach, about a 5-15% risk of facial nerve weakness (and I think it's likely higher, as this is the surgeon's definition, not from a patient's perspective) and then there are the risks of dry eye, headache, CSF leak, meningitis, etc.
Needless to say, the more research I did, the less appealing the thought of microsurgery was to me. After all, I feel fine, I'm in the prime of my life and I easily could have ignored my symptoms for several more years, so why rush into something that could potentially ruin my life.
After reading all of the patient stories posted here (and they were VERY helpful), I decided to investigate radiotherapy more closely. From the data that I was able to find, and being a doctor I was able to find quite a bit, gamma knife was out. While it avoids the actual surgical related risks, the hearing and facial nerve data were not to my liking. FSR, on the other hand, looked pretty good.
I again spoke to my friend (and I had well intentioned relatives speak to ENT friends of theirs) and again the opinions were solidly against radiation. Maybe if I was in my 60's they said, but at my age, the long term risk of radiation was too high, I was told, surgery is the only way to go.
Well, at this point, which is only about 5 days after the diagnosis, I decided to speak to some people myself and I e-mailed both Gil Lederman and Jeff Williams, as they seemed to be the ones with the most extensive FSR experience. To my amazement, they both called me within 48 hours. They answered all of my questions and dispelled most of my fears about secondary radiation induced malignancy. These fears, by the way were very much heightened by and editorial written by Drs. Pitts & Jackler in response to a paper in the The New England Journal of Medicine about the University of Pittsburgh GK program. In the editorial they reference every instance of a secondary malignancy after head irradiation, which while only about 7 cases, was still scary.
3. Waiting and watching
(2/99) After reviewing everything, I've decided to watch and wait. If and when I decide to do something it will almost certainly be FSR with Dr. Lederman. I've decided the longer I can wait, the more data and experience there will be.
I still have not gone to formally meet a neurotologist, as I'm fairly certain what they will tell me - surgery is the only way to go. As my symptoms are stable and I feel fine, I have decided not to rush into FSR either. While I am concerned about the risk of progressive hearing loss (I had six month follow-up testing last week and the MRI is stable, but my hearing is slightly worse on testing) my symptoms are subjectively stable (can't use the phone or hear clearly in a noisy room with my left ear).
I would like to thank Dina and all of the contributors to this site. The information has been invaluable to me. If not for all of this information, and certainly 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. I'll be sure to send an update and let you all know how things progress, or hopefully don't.
(2/00) I just had my Follow-up MRI and Audiogram. The MRI shows no change and the audiogram is exactly the same as July '99. I plan to continue waiting and have another set of follow-up tests done in about six months.
(5/01) I had 2 more MRI's: July 2000 (it had grown about a millimeter) and May 2001 (the AN grew a bit more to about 8x10x16 mm in total size). Additionally, while my pure tone hearing remained unchanged, I had significantly more distortion in my left ear and my ability to discriminate words decreased from 80% to 60%. Taken on the whole, I decided that this meant it was time for treatment, and as I had decided previously, I made an appointment with Dr Lederman. I'll describe the events in detail for the Archive readers.
4. The treatment, July 2001
As others have written, the team at Staten Island University Hospital is very nice and helpful. I mailed them my MRI's and once they were reveiwed, I was called back by a member of the staff. They checked to make sure that I wouldn't have any trouble with my insurance company and I managed to arrange an appointment within a month.
My first day, a Tuesday, I had an appointment with Dr Lederman at Noon. He actually came in about 10 minutes early and was extremely nice. He spent an hour with me and my family telling us all of his data and answering all of our questions. Although I had made my mind up before even meeting him, he wanted to be certain that I wanted to proceed and even told me to go home and think about it if I wanted; there was absolutely no need to rush into things. Having decided to proceed and having cleared my work calendar, though, I told him I wanted to start ASAP.
A few minutes after he left, and I do mean minutes, one of the dosimetrists came in and started fitting the head frame. The first thing they did was take a mold of my upper teeth. It took about 2 minutes to harden and then it was removed and attached to the circular head frame. The mold was then placed back into my mouth and another mold was taken of the back of my head.
This is how the headframe is then fitted every time. The dental mold is inserted into my mouth and then the frame is tightened against the back of my head to securely hold the whole device in place. Other than feeling like my teeth are being rearranged, it really isn't terribly uncomfortable. They take approximately 20 measurements with a bubble attached to the frame. These measurements are then checked each time the frame is put on, to make sure that the exact area is being treated.
The frame was then removed and a nurse started an IV. About 15 minutes later, I was taken to a CAT Scan and the frame was placed back on. After I lied down on the table, it was screwed to the table so that my head couldn't move. All the measurements were taken 2 more times to make sure that the position was correct. The CAT Scan took about 10 minutes or so, and then I was done for the day.
I was told to come back the next day, Wednesday, for my first treatment. I was scheduled for 1:30, but I wanted to be sure that I got there on time, as I was commuting from home, and I ended up arriving at about 12:30. They took me in at about 1:05 as they were running ahead of schedule (I have consistently been impressed in that everything I have had has been on time or usually early!). After I was brought into the linear accelerator room, I sat on the table and the head frame was placed on. I lied back and the frame was screwed to the table just like with the CAT Scan. The bubble was placed on and the dosimetrist took all of the measurements twice to make sure that I was in the EXACT position. After he did that. Dr Lederman came in and double checked that everything was correct and re-did all of the measurements himself.
The actual treatment consisted of the linear accelerator rotating around me three times, with my head and body situated at a different angle in relation to the radiation beam each time. Each of the three beams took approximately 20 seconds. After all three beams were delivered, I was unscrewed from the table, sat up and the head frame was removed. I couldn't believe how nothing the whole thing seemed. I really felt nothing at all. Several hours later I did feel some increased ringing in my affected ear which lasted about 24 hours. By late the following night I actually thought that my hearing was somewhat improved. It was not any louder, but it seemed less distorted.
After having Thusday off (I actually went to work), I returned Friday for my second treatment. Again I was early and they took me in early. The process was exactly the same as the first treamtent. The whole thing from entering the room to leaving was about 12 minutes. I again had increased ringing for about 24 hours which again had subsided.
I have my third treatment tomorrow, the fourth Friday, and the fifth and final next Monday. Dr. Lederman is now treating everyone with 5 treatments of 400 rads each, on an every other day or more basis. He and all of his staff are exceptionally nice, professional and informative. I am very hopeful that this will work; his success rate is over 99%, and so far, knock on wood, no side effects. The follow-up will be an MRI in 4-5 months and then every 6 months for the first 2 years. Then he says about once a year. I'll also have audiograms done at about the same schedule to track how my hearing is doing.
I'll keep you informed as to my follow-up results.
Louis H. <lh1969 AT hotmail.com>
(12/01) I just had my first post treatment testing. My hearing has worsened on testing, but not noticeably to me. On MRI the AN was minimally larger in one dimension, But Dr Lederman liked the way it looked showing some early central necrosis. My next set of tests will be in July 2002 and I am keeping my fingers crossed.©
To Louis' entry in the Patient Directory
Last Edited: Wednesday, October 30, 2002