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Ben's Story

My name is Ben Neideigh. I live near Lancaster, PA. 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!

In January of 1998, I completed an FSR treatment regimen with Dr. Jeffery Williams at Johns Hopkins for a left-side 1.2cm x .8cm acoustic neuroma. I consulted three surgeons prior to meeting Dr. Williams; two wanted to go suboccipital, with no promise of preserved hearing, while the third would only offer me the translab approach. As I still have usable hearing in my left ear, and as I use my hearing on a daily basis in my profession (which includes audio and video production), I was not interested in making a sacrifice of that magnitude without searching other options.

After months of deliberation, tests, consults with various surgeons, neuro-otologists and radiosurgeons, I chose FSR. I chose FSR first because if offered me the greatest chance of some degree of hearing preservation, and second because of its non-invasive nature (and thus, the avoidance of post-operative complications). I made this choice against the advice of the surgeons and neuro-otologists I consulted, but with the blessing of a number of other medical professionals. They included my family GP and my dentist, who happens to treat another patient who had AN surgery and lives with severe facial paralysis (and related dental problems) as a result.

FSR as I received it at JHUH with Dr. Williams was a five-day process; I started on a Friday, skipped the weekend, then went Monday through Thursday to finish off the process. The radiation itself was intense high-frequency photons generated by a linear accelerator. Other than some mild fatigue I feel just fine; on days when the treatment schedule permitted, I worked; unfortunately, though, three were at mid-day, and given the to-and-from Baltimore commute, this blew any chance of meaningful office time...

I had my first "milestone" MRI on May 27, 1998. It showed that the blood supply to my AN is significantly reduced, meaning that it glows a lot less on the film and the tumor has shrunken slightly. This is the best news I could have hoped for! While I'm still dealing with a moderate hearing loss and tinnitus that fluctuates from barely there to "airliner at idle" knowing I've made progress in confronting this illness is an incredible relief.

Although it's vehemently denied, I do believe there is a feeling among AN surgery survivors that those of us who chose radiosurgery "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.

I would be happy to answer any questions regarding my AN, my treatment, and my current health status.

Ben Neideigh <Ben AT SpencerMedia.com>
May 1998


Updates

(11/98) My latest MRI at Johns Hopkins revealed further slight tumor shrinkage and decreased gadolinium response. So things continue to progress well...  Additionally, an early November audiogram revealed a decrease in my left-ear audial discrimination from 80% to 60%. This was roughly a year after my last audiogram, and indicates some further deterioration in my hearing. Based on what I understood from Dr. Williams going in, plus my conversations and e-mails with other FSR and GK patients,  this is pretty much par for the course.

(5/99) My latest MRI revealed significant shrinkage of the tumor. Previous scans at 1, 4 and 10 months post-treatment had shown slight shrinkage and decreased response to the gadolinium contrast agent, but yesterday's films showed a dramatic difference, obvious even to untrained eyes (specifically mine and my wife's).  Both the size and the shape of my AN have changed for the better. 

Further, and this is just my perception, it "feels" like the hearing loss I've experienced after treatment is bottoming out at a level that, while not ideal, gives me some useful hearing in my left ear. For instance, it still helps with listening to music, although extreme stereo effects are pretty much lost to me now. And it's surprisingly good for listening to talk radio in the car, possibly because it's getting the reflected sound off the left-side driver's window. 

I will have one more six-month test interval, meaning my next MRI is in early November. After that, if the progress noted above continues, I'll be able to go down to once-a-year scans.

A footnote to all this: while this is almost certainly unrelated, I was diagnosed with Type 2 diabetes in early February. This has necessitated a radical change in my diet and exercise habits. The results, so far, have been very good: I've lowered my blood glucose count to normal levels without medication, and I've lost 58 lbs. in the process!

(11/99) I had my latest MRI and post-FSR consult with Dr. Williams this month. The bottom line: my AN remained exactly the same size as it was in the last scan, but continues to show what the Doctor describes as "subtle decreases in response to the contrast agent," meaning it glows less and less with each scan. He characterized these results as excellent, and after discussion we agreed that I could wait a full year until my next MRI.

A few interesting points that came out of our conversation. First, he told me that his experience with FSR-treated ANs is that when they shrink, they tend to do it in steps. They'll drop dramatically, then level off, then reduce some more. Of course, some don't shrink at all. Others shrink once-and-done, remaining at a stable decreased size. He also said that no AN he's treated so far has subsequently shown growth. A pretty remarkable statement, I think.

I had my latest audiogram last week (11/23). It revealed that the discrimination in my left (AN) ear has dropped to 36% (from 50% a year ago).   This was not unexpected; according to Dr. Williams at Johns Hopkins, FSR patients typically don't level off in hearing loss until somewhere between 18 and 24 months post-treatment. On the positive side, my audiologist believes, based on the audial acuity remaining in the "bad" ear, that I might be able to use a hearing aid once the level-off has occurred. I'll probably be retested in another 4-6 months.

Let me also say that my diabetes control program yields good results. My blood glucose levels have stabilized comfortably within the accepted "normal" range, and between Feb. 3 and Nov. 8, I lost a total of 101 lbs. Suffice it to say, I do not need medication for the diabetes at this time... and hope never to need it.  If you're interested in my particular regimen, I'll provide details separately.

(11/00)  I just had my latest MRI (first of the annual series after a series of every-6-months scans) and it confirmed that the tumor is not growing. I will be seeing Dr. Williams again in November, 2001. I still retain "some" hearing in my AN ear (left), so in that sense it has been preserved... However, I wouldn't call my residual left-sided hearing usable in any normal situation. I am functionally one-eared.

(1/02) Just wanted to share my good news: my latest MRI, 4 years post-FSR at Johns Hopkins, once again shows no growth of my "smallish" left-side AN. Whew!

Good health, good times and good luck,

Ben Neideigh <Ben AT SpencerMedia.com>

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Last Edited: Wednesday, October 30, 2002