my Only Choice
I've been reluctant to post here because the AN Archive clearly has a pro-radiation, anti-surgery bias, and I began my research with neither. Every surgical patient is different... some of us have no choice because of tumor size. Others prefer the feeling of finality offered by surgical removal vs. annual MRIs and the hope that some shrinkage occurs, or at least that tumor growth stops.
On April 13 2000, I had a 5 1/2 cm Acoustic Neuroma removed by a great surgical team: Drs. Rick A. Friedman and Dr. William Hitselberger at the House Ear Clinic in Los Angeles, CA. Here is my story and a two-month update.
1. Diagnosis and research
My introduction to all of this came in February of 2000, when, unable to put up crown moulding on my house because of balance problems, I saw an ear specialist. Suspecting an AN, he sent me for an MRI. Prior to this, I had a high frequency hearing loss that I attributed to flying too often with a cold, but nothing else I'd have recognized as symptoms. The balance problems may have begun in the prior year, but I can't be sure.
During the week spent waiting for the scan, my wife and I began our research. We thought that the absence of symptoms correlated in some way with tumor size. We researched radiation options like crazy, deciding on radiosurgery at either the Cleveland Clinic or Johns Hopkins. Radiation certainly was not invasive like brain surgery, would take less time and be far less disruptive to our life and my career, and (not incidentally) would not hurt as much as surgery. Then we saw the scans with this gigantic thing growing in my head, and we knew that surgery was my only choice. On the MRI the tumor appeared to be at least 4.5cm and crowding out everything in its way. There was significant brain stem pressure, yet I was almost symptom-free. For us it became a simple matter of finding the very best surgical solution available.
The local doctors simply didn't have enough experience for me. One team performs about twenty suboccipital procedures per year and the other group does about thirty translabs and middle fossas combined. In both instances, their experience with large tumors was very limited. A neurotologist at nearby Yale Medical Center (where my insurance company wanted to send me... more on that later) told us he felt strongly that I'd lose the facial nerve. His approach to the surgery was in two phases, one at least 12 hours long where theyd remove most of the tumor, the second (where they'd finish removal and perform the anastomosis, the reconnection of the severed facial nerve) about 4 hours long.
The majority of AN patients we read about and heard from seemed to have settled for local surgeons or followed a radiation ad on the radio or went where the insurance company dictated. Very little discovery took place... We kept researching. Through contacts, we talked with the head of neurology at one of Manhattan's best hospitals. He said there were "maybe ten" neurosurgeons in the country he would recommend to perform my surgery, three in New York. If I preferred Boston, he could recommend someone there. We spoke to or met with all of them.
Meanwhile, my insurance company refused my request to go out of network for this surgery, thus limiting the choice to Connecticut. For those of you who think that intransigent surgeons need to reassess their view on what successful outcomes actually are, try talking to an insurance company about things like "quality of life." I fought with them, pleaded with them, constantly called them, wrote two appeals and sent them reams of information for almost two months before they finally relented SIX DAYS before my surgery. But thats another story.
I had heard of Dr. Rick Friedman, a neurotologist at House and began corresponding with him. I sent him a copy of my scans, which he reviewed with Dr. William Hitselberger, a neurosurgeon. Dr. Hitselberger has done over six thousand AN removals and deals with more LARGE tumors annually than any of the other doctors with whom we spoke do TOTAL tumors. Dr. Friedman has performed close to 300 AN removals to date. Numbers aside, both of them were very passionate about their work, extremely supportive in my war with the insurance company, and very accessible throughout.
We decided to have the surgery there because of the unmatched experience of the surgical team, much shorter time under anesthesia, and the passion and compassion of Rick Friedman, Bill Hitselberger, and the other professionals we dealt with. For these and other reasons, we chose Friedman and Hitselberger, despite the cross country trip and being away from home for what turned out to be a few days short of a month.
2. Treatment and results
My wife and I flew out on April 8; surgery was April 13. The tumor turned out to be quite nasty according to the surgeons, and at 5.5 to 6 cm, significantly larger than expected. Yet, the surgery took only six hours, even though by Hitselberger and Friedman standards that was quite a long time. The facial nerve is intact and uncut, there was no nausea or vomiting at all, speech was only marginally and temporarily affected, appetite has been great, and there was very little pain. The most serious side effect was loss of balance, but even so, I was walking fairly well when I left the hospital and my balance continues to improve.
Being hospitalized is no picnic, but it is nowhere near as uncomfortable or unpleasant as you might think. I say this even though I was one of the "lucky" 4% to undergo a re-closure for a CSF leak. Because the tumor was so large, I did have a CSF leak, which Hitselberger repaired in a 40-minute procedure. This extended our time away from home by 8 days.
Since coming home, I've been doing a great deal of nothing... just taking it easy, recovering, and getting used to monaural hearing. Losing my right-side hearing under the circumstances was a very small price to pay. When I get tired (and I do), I rest. I began driving again without difficulty a week and a half after returning home, and I started in on a modified four to six hour daily work schedule right after Memorial Day. Ibuprofen when needed for headaches is the only medication I'm on.
As of June 10, 2000, balance is an 8 1/2 out of 10, except in darkness, where its a 7. Driving on both secondary roads and freeways is normal. I never lost swallowing, taste, or eye functions. I did lose some feeling in my face and mouth, and I experience some facial paresis (temporary paralysis) on the right side only. The feeling is coming back, as is the muscle control. As the brain swelling subsides and the nerve recovers from manipulation during surgery, I have more frequent twinges on the right side of my face and mouth (natures own mileposts on the road to recovery). The only evidence of surgery after two months is the scar, which you have to look for because the hair has grown back, and a crooked smile.
If the people at the House Clinic didn't save my life, they certainly preserved it. I had a huge tumor totally removed without cutting the facial nerve. Nothing happened to me that they were not prepared to handle. I had no eye surgeries, swallowing difficulties, or any of the side effects often reported this I credit to the experience level of my surgical team. The first MRI is in three years, there's a House Fellow in New York City for me to see yearly, and I'll stop in for a check-up whenever I'm in California.
The right side hearing loss has been surprising easy to become acclimated to. At restaurants or in crowds, I have to position myself correctly, but that quickly becomes second nature. (TIP: Sit with your bad ear towards the wall or windows of restaurants; that way, you there is no conversation or background noise coming towards it.) The hearing loss is a very small price to pay for a normal life. Everything turned out very well...exceeding all expectations, over and done with... and that's the way it should be.
David Wrubel <dwrubel AT attbi.com>
June 15, 2000
(7/01) I've neglected to update my original posting regarding my AN surgery in April of 2000. I want to do so now because a few people have contacted me recently based on my original story, and it might be helpful for large tumor patients to know what's gone on in the last year or so.
Originally, I had a 5.5 cm tumor and almost no symptoms. After local diagnosis and consults in Hartford, NY, and Boston, and after doing major battle with my insurance company, I had surgery at the House Clinic in LA. Drs. Rick Friedman and Bill Hitselberger not only removed the tumor entirely, but did not cut the facial nerve. My one year MRI was absolutely clear, and the radiologist here in Hartford told my internist: "You have to see these scans....The surgery is a work of art and I've never seen anything like it."
I had no headaches or nausea at all in the hospital, and no problems with speech, swallowing, or eye. I needed only eye drops right after surgery and for one six-week period during my recovery. The right side of my face has progressively regained sensation. My facial nerves are still regenerating. Periodically there are changes in the overall feeling on my right side, and once in awhile I get zapped with a major twitch. That's good. But I'm still fairly numb around the corner or my mouth and along my jaw line, and expect to remain that way. Frankly, I don't care about that, because nobody knows from looking at or listening to me that I had brain surgery. Same goes for losing the hearing on the right side... it's part of the deal when you have a large AN.
Here's what I can't do that I used to be able to do: I can't play competitive basketball any more. But I can still shoot around and coach my kids' teams. I can't (and wouldn't) water-ski. That's about it. I can still ride a bicycle, so balance must be pretty good.
Drs. Friedman and Hitselberger not only saved my life, but in doing so they preserved it. For me that was the key. Public speaking is a big part of what I do for a living, and I wasn't about to risk continuing my career with half of a functioning face. Frankly, I don't think I could have. My biggest fear was HOW I would turn out, not IF I would survive the surgery. I felt strongly that the right place for me was the House Clinic. They've seen it all, know how to deal with the patient and family from start to finish, and beyond. It is not only a center of excellence, it is a place full of compassion and understanding.
If you have a large tumor and your doctors either
(a) express any doubt whatsoever about getting all of it out;
(b) plan to use the retrosigmoid approach;
(c) tell you that they "might" or "probably will" have to cut the facial nerve;
(d) say anything about follow-up radiation treatment after surgery;
(e) perform fewer that 40 or 50 LARGE (3+ cm.) tumor removals annually,
you owe it to yourself and your loved ones to get a second opinion from Rick Friedman at the House Clinic. That's my own opinion, and my own experience. Life goes on. Good luck to all of you, and feel free to contact me via e-mail....
My April, 2000 surgery for a 5.5 cm tumor at the House Clinic is well-documented in here, but by way of an update, the latest MRI was crystal clear and I expect the next one this April to be as well. Life is normal. I had not heard of Dr. Jeffery William's sudden death earlier this year and would like to express my condolences to all of his patients. He did great work at Johns Hopkins, and even though my situation made any non-surgical approach impossible, I understand those who are proponents of radiation. I am not, however, especially for larger tumors and younger people.
I have talked to an increasing number of patients in their thirties and forties who DID have FSR or Gamma Knife who have subsequently experienced tumor regrowth and other symptoms, some of which are really intrusive and life-altering. While I'm sure this is not the experience of the majority of radiation patients, I do know that surgery after radiation can be and often is problematic...certainly it is more difficult to achieve a good outcome via surgery AFTER radiation than before. Because of my own experience and a very large amount of anecdotal information I have accumulated over the past three years, I recommend that they talk to my doctors, whose experience is unsurpassed in this country and perhaps the world.
I have difficulty accepting blanket statements about anything as complex as the 'proper' or 'best' solution for Acoustic Neuromas. National rates of mortality, disability, regrowth, and complications after AN surgery in my mind constitute a blanket statement. These statistics, in order to be meaningful and properly evaluated by non-scientists, need to take into account tumor size, surgical approach, age and health of the patient, experience of the surgical team and other factors. Otherwise there is no context for the numbers. One thing that most seem to agree on is that the surgeons' and the institution's experience specifically with ANs is THE major factor in one's surgical outcome.
It is one thing to fear surgery because of general statistics; it is quite another to understand what the success rates and quality of life preservation levels are at those institutions where the most experienced doctors are. And when you do, your fear of surgery might be substantially reduced.
Believe me, brain surgery IS brain surgery, and I don't for one second blame anyone for trying to avoid it. I did, before I knew the results of my first MRI. But if you have to have it, or are unsure about the long term statistics of non surgical approaches, go to the best doctors possible and don't worry about flying, insurances companies, or anything else. Just worry about you.
My opinions only... your mileage may vary.
David Wrubel <dwrubel AT attbi.com>
Avon, CT USA
To David's entry in the Patient Directory
Last Edited: Wednesday, August 13, 2003