Last December I was thrust into the acoustic world...

For two years prior I had experienced a muffled sensation and fullness in my right ear. A respected ENT sent me home with decongestant and told me it would clear up. Based on his diagnosis I investigated other possible causes of the sensations such as TMJ or wisdom teeth.   When the condition did not improve and I began experiencing numbness on the right side of my face as well as some dizziness, my husband, Larry, urged me to see another ENT. The second ENT also found nothing but at my insistence that something was wrong, ordered an MRI scan of the brain and, without informing me of the results, referred me to a specialist. On December 23, 1998 I was diagnosed with a 2.5 cm acoustic neuroma by Dr. Rick A. Friedman at the House Ear Clinic in Los Angeles and I was devastated.

The surgical vs. radiation treatment of acoustic neuromas divides the medical community as there is no single, definitive treatment and the choice is extremely individual. There is nowhere to turn for an unbiased, objective opinion on which to base a decision. Patients are typically referred to neurosurgeons or neurotologists who recommend immediate surgery and, in most cases, mention no other option. I, however, was quite fortunate to have been sent to Dr. Friedman. A very experienced neurotologist, Dr. Friedman actually informed me that the radiation option existed, though as a surgeon he did not feel it was best and recommended wholeheartedly that he do a trans-labyrinthine procedure. He never rushed me into a decision, but encouraged me to get informed and offered to work through the decision together. The goal was to do what was right for me.

Considering that my hearing was great and I wasn't particularly symptomatic, my husband and I embarked on what became a five month politically charged odyssey to explore my options. We were very fortunate to have the time and resources to drop everything and devote ourselves to research which included meeting with over 40 other top experts in both surgery and radiation on both coasts, sending my MRI to experts in Europe, interviewing dozens and dozens of patients, and reviewing an extensive collection of paperwork. After exhausting all resources in the AN field, we concluded that although nearly 80% of AN patients have surgery, I felt that radiation should be the primary option.

The goal of surgery is total removal of the tumor whereas with radiation success is achieved by stoppage of growth or shrinkage of the tumor. One of the main concerns in choice of treatment is the quality of life for the patient following treatment. Radiation carries its own set of risks, but I determined them to be less than surgery, and there is the added benefit of possible hearing preservation. A non-invasive procedure, radiation eliminates the risks and extensive recovery associated with open surgery.

Choosing radiation is one thing. Choosing a form of it is another matter. Since protocols for radiation treatments differ so greatly and some are relatively new, they are nearly impossible to compare and, for certain forms, there is limited data available to date. The Gamma Knife is a non-invasive, highly accurate device which delivers a single dose of 201 beams of cobalt radiation with pinpoint accuracy to deep seated tumors within the brain that was developed in Sweden 30 years ago. Over 7,000 patients have been treated to date. Linear accelerator based systems (LINAC) and proton radiation systems are newer but less accurate, however, they offer more safety to the nerves and surrounding healthy tissue through multiple treatment sessions known as "fractionation".

Larry and I determined that the Gamma Knife had longevity and accuracy, but that there were certain benefits to fractionation and that if there was a way to combine the two methods it would be the optimum treatment. So we brought the concept of "Fractionated Gamma" to Dr. Georg Noren of the New England Gamma Knife Center in Providence, RI. Dr. Noren is one of the originators of the Gamma Knife and top physicians in the field having performed over 700 AN procedures. He completely supported and believed in our concept and spent days with us in person and by phone reviewing our research. Together we designed a brand new radiation protocol for brain tumor treatment.

The standard Gamma Knife treatment is performed in one long day requiring the attachment of a fixed headframe followed by stereotactic MRI and CT scans. Those images are then fused and a 3-D image of the brain and tumor is created on a computer from which targeting and dosage is planned. The patient is then placed in the Gamma Knife unit for delivery of the radiation. Instead of scalpels and standard medical instruments, the doctors use screwdrivers and wrenches to adjust the frame for different "isocenters".

My new "fractionated" protocol required that I wear the fixed headframe for 5 days -- longer than previously attempted. The radiation treatments from May 10-14, 1999 lasted approximately 4 1/2 hours daily with a total of 1,040 manual adjustments. The Gamma Knife Team at Rhode Island Hospital is marvelous and I could not have been more comfortable or cared for. The week was flawless! We recently did a 3 month follow up MRI which showed early signs of necrosis, but I know it will take some time to determine the ultimate success of my treatment.

Dr. Noren has now completed 3 more "fractionated Gamma" procedures following my protocol. He is remarkable and I am grateful to him for believing in me and taking the risk of setting this new radiation protocol. I am so impressed with the care and precision of his planning -- he did the most intricate and conformal targeting possible and nothing was compromised. He's fantastic!

Throughout the decision making process, Dr. Friedman remained amazingly supportive and even assisted our efforts. He shared his knowledge, offered his perspective, challenged the research and debated tirelessly to help us sort through the massive amount of information and conflicting opinions. I really respect him for his honesty regarding surgery and for sharing his reservations about radiation. His strong convictions ultimately had a tremendous influence on the creation of my treatment.

There is limited awareness of acoustic neuromas and their treatment, by both the public and the medical community, yet a large number of people are effected yearly. One of the greatest problems is early detection because patients are frequently misdiagnosed due to misleading symptoms. It is essential that the public, general practice physicians, ENT specialists and insurance companies become aware of the symptoms, the need for early MRI scans, and all treatment options. There is a lot of misinformation out there, so ask questions and for data to be substantiated, gets lots of opinions, draw your own conclusions and make an informed decision.

I can't emphasize enough how much NUMBERS AND EXPERIENCE MATTER! The experience level of the treating physician -- whether surgical or radiation -- is crucial and has a direct correlation with the success of the outcome. For patients opting for surgery because they do not meet the criteria for radiation, or psychologically and emotionally are unprepared to deal with it, I strongly recommend that you go with a surgeon who has lots of experience and a low personal risk rate. Someone who has done only a few in their career is NOT experienced! Dr. Friedman has performed over 200 AN removals and I understand that he has a very high success rate. He's also recently been removing larger tumors up to 2.4 cm via the middle fossa approach and is having success preserving the hearing and facial nerves. If surgery is ultimately your choice, I know that you could not find a more experienced surgeon with greater genuine concern and compassion for his patients than Dr. Rick Friedman.

Drs. Noren and Friedman continue to follow my progress and monitor the side effects and I know that I could not be in better hands. Though they have different approaches to treating acoustics, they both strive for hearing and facial nerve preservation and place great importance on the quality of life which factors highly into their work.

Victoria Paige Meyerink <vpmeyerink AT hotmail.com>
Los Angeles, CA

October, 1999

Update

(12/99) We had the 6 month MRI done in November with Dr. Georg Noren at the New England Gamma Knife Center and the tumor is stable with no growth. There are a few more black spots, presumably necrosis, but it is otherwise unchanged. I returned home to Los Angeles and checked in with Dr. Rick Friedman at the House Ear Clinic to evaluate my hearing which appears to be unchanged as well. With the exception of headaches and trigeminal nerve activity -- both which were present prior to my Fractionated Gamma treatment -- I'm doing well.

In speaking with many of you out there who are deciding what form of treatment to choose, I have been somewhat alarmed at the resistance to go far from home for that treatment. Location and distance should not be a factor because having the best and most experienced physician in either field is the most important issue. We're talking about your life and the quality of it post-treatment, so I really believe that you should take every step necessary to insure that you have the bery best.

Please feel free to contact me for information, Dr. Georg Noren (401) 444-4257 with regards to Gamma / Fractionated Gamma treatment, or Dr. Rick A. Friedman (213) 483-9930 for surgical removal.

(6/00) I recently had my 1 year MRI with Dr. Georg Noren at the New England Gamma Knife Center in Providence, RI and the tumor is stable with no growth, and possibly more necrosis. I am also followed very closely by my diagnosing physician, Dr. Rick A. Friedman of the House Ear Clinic in Los Angeles, who found my good hearing to be stable as well. So far, so good!..  I have every confidence that the Fractionated Gamma protocol we developed will be successful.

(8/01) I recently had my 2-year MRI with Dr. Georg Noren at the New England Gamma Knife Center in Providence, RI.  The tumor is stable with no growth and shows additional necrosis. My hearing in that ear was always great, and has only very slightly diminished. There have been no side effects such as paralysis or imbalance. I do have headaches, but I always have, so it's difficult to say that they are tumor related? I am having some success with MygraFew by Nature's Way (or I could just reduce some of the stress in my life!).

So, 2+ years since treatment and I'm doing well. My progress continues to be monitored by my treating physician, Dr. Noren, as well as surgeon Dr. Rick A. Friedman at the House Ear Clinic here in Los Angeles (just in case!?)

Dr. Noren presented our new protocol at the International Stereotactic Radiosurgery Society (ISRS) Congress in June, with two years of data on 10 patients so far. Of the 10, 8 have shown shrinkage and/or necrosis of the tumor. I believe he'll be doing the 12th FGK this month. My deepest appreciation to Dr. Noren for believing in my research and daring to do something different. If I can be of help to anyone, please feel free to contact me.

©

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Last Edited: Friday, November 01, 2002