Hello,
I haven't posted here in several years, but thought it relevant to retell my story for the "newly diagnosed".
About five years ago (1999), I was admitted to the hospital due to severe head pain. The doctors quarantined me, thinking I had bacterial meningitis (eek). After five days of poking and prodding, they discovered I had a raging sinus infection which invaded my skull. "Oh yeah," as I was told at 10:00 pm by an idiot intern, "we also noticed a good sized tumor on your brain stem...have a good night, we'll tell you more in the morning." This was, what I thought, the beginning of the end for me...at the ripe old age of 28!!!
The doctors informed me that the head pain and the tumor were unrelated. They were actually surprised that I had not suffered balance and hearing problems since the tumor was slightly over 3 cm. Anyway, they scheduled me to be transferred to Robert Wood Johnson Hospital in New Brunswick, NJ for immediate brain surgery. Ummm...Not! I explained to them that no one was cutting into my head without allowing me to "do my homework" first. Of course, the lead neurosurgeon (arrogant old SOB that he was) balked at the idea that I didn't trust him...but so be it. Over the next two weeks, I soon discovered that my diagnosis was not a death sentence. You must understand, I had four doctors standing over my bed telling me that the only viable option was brain surgery. They casually told me that I should not worry, even though I would be left completely deaf in one ear, have moderate facial paralysis, lose the ability to blink in one eye, most likely have slurred speech, balance problems, and chronic headaches, I would be able to qualify for permanent disability since working for a living would probably be quite difficult.
Ooo...how special!
I soon discovered the technological wonder known as LINAC, which stands for Linear Accelerator. One can think of it as the next evolution of the Gamma Knife. Instead of using a radioactive source with a shutter, like an X-ray, it uses a Particle Beam Accelerator to generate highly focused electrons (radiation) with pinpoint accuracy. Over the next few days, I scheduled appointments with five neurologists, to hear what they had to say on my condition. First off, they all agreed that I was able to mask my balance issues due to my age and physical condition. I was actively involved in several sports and my reflexes were compensating for the "wobble". But, they felt brain surgery was the only "real" course of action I should be considering. When I asked them about GK or LINAC, they all said basically the same thing, "It doesn't work", or, "It's not really tried and tested", or "It might cause cancer...since it's radiation...you know". Long story short, I was force fed a load of crap by every one of them. Since they were or were affiliated with traditional brain surgeons, the only thing I could figure was they were defending their profession and turf by misleading my decision. In essence, since they couldn't do it, they dismissed the option. In hindsight, it really disgusts me, now that I think back on the experience.
This leads me to my first visit with Doctor "G.L.", who at the time, was pioneering the treatment at Staten Island University Hospital. He explained to me in simple terms how LINAC preserves the function of the facial nerve, and in his experience, saves most if not all of hearing. After much discussion, he explained that by using LINAC in a Fractionated Stereotactic Radiosurgery approach, where the dosage is divided up into several treatments, he has seen nearly a perfect recovery rate. I of course said, "Doc...perfect??" He admitted that while there can be no such thing as "perfect", so far, his successes were overwhelmingly more than his failures. I respected his candor and continued the questioning. He explained that the beauty of LINAC FSR is that if the treatments have not reduced or destroyed the tumor as expected, further treatments can be conducted.
Radiosurgery does not rule out having future surgery, if necessary. This is not true with traditional surgery, as once the tumor is removed, any nerve damage caused by the extraction is usually permanent (or at least not repairable by further surgeries). ANs are considered "sticky" tumors, and removing them tends to rip healthy nerve tissue away. Additionally, physical removal is risky and will require a prolonged recovery (heck, it is brain surgery!). However, with LINAC, there is a very good chance that I should not have any real issues.
I decided to go for it!
Three weeks later, I began. I was scheduled for five treatments, over the course of two and one half weeks. More treatments would be prescribed, but only if necessary. The FSR required a mouth piece to be fashioned. It was similar to the "goop" used to make a bite impression in the dentists office...yummy! Since the machine, which looks like an open MRI, rotates around the patient and tumor, the patient is required to locate himself in X,Y,Z axis 0,0,0 every time. In the "old days" this required screwing in a head frame to your skull. However, with the mouth piece (or face mask) approach, you can go home after the treatments.
Over the next two weeks, I proceeded to be treated. The actual treatments lasted only 2 minutes or so. It took about fifteen minutes to get in position on the table. The machine buzzed a bit like a smoke alarm...quite relaxing actually. I drove myself to and from the hospital each day. The only post treatment issues I had were a slight (100 degree F) fever the next day, which was easily handled by two Tylenol. I continued playing hockey and going to work during the treatments...no problems whatsoever. All in all, not much to talk about. I felt as good as always with no funny affects.
I believe my first MRI was 3 months later. The tumor had swelled a bit but all looked fine. My hearing had worsened slightly, but this was normal. At 6 months, my hearing returned to "normal" (which for me, was a 30 dB shift in the mid-range frequencies) and the swelling had decreased. The tumor was back to it's original size of about 3 cm. At 1 year, the tumor began to shrink...a great sign. My hearing remained the same, as did my balance. At year two, the tumor had shrunk some more, and my hearing improved. It's worthwhile to note that my hearing in the effected ear was never that bad to begin with. As the audiologist told my after I had my first test, "You have the hearing of a normal 28 year old, slightly decreased in one ear in the mid frequencies." The other ear was above average for my age. I then told her I had a 3 cm AN, which she refused to believe. She tested me again...for giggles.
I was more than happy to play along (LOL). Years three through five proved uneventful, as the tumor became darker on the MRI...a good sign it was scar tissue.
I'm now at year 5 and have stopped getting annual MRIs. The tumor has not regrown or changed in size. My hearing has stabilized, and my balance is about the same. I occasionally have to catch myself, usually when I'm tired, but for the most part I have no long term issues. I truly consider myself lucky, since it was detected prior to suffering long term issues. The doctors are amazed that I had it at all since I was so young. Again, I consider myself lucky...how many people get to say they are in a group as exclusive as us (10 in a million chance).
I guess my point is this...being diagnosed is not the end of the world. Research your options, and take the source of the information into consideration. The beauty of today's treatments is they can be done more than once. While traditional surgery has it's value, in my opinion, it should be the last option, after GK and LINAC have been exhausted. I've met and spoken to too many people that had small tumors removed through surgery who now have permanent disabilities. I only wish I could have talked to them before they jumped at the first neurosurgeon they spoke to...a real shame. You can always have surgery if radiation fails. GK has been around over 40 years, so it has been perfected. LINAC is newer, but is/can be a bit more focused. Surgery is the oldest, but for some, is the only choice. Just make sure you realize a doctor is still human, and some will defend their turf till the end even though the treatment they are recommending may not be the best for you...it's a fact of life. Yeah they should have the best interest of their patients in mind, but guess what...if they consistently send the customer to the "guy down the street with the better technology", they won't have a job for long. Most insurance companies jump for joy at the GK/LINAC treatment since it's a fraction of the cost of traditional surgery. I know mine did (Aetna/US Healthcare). I paid my $100 deductible and never looked back. Keep this in mind. Traditional brain surgery costs a fortune. The long term disabling effects can get rather expensive as well. For that reason, insurance companies tend to approve radiation therapy without much push back.
I'm posting my story to try and ease the anguish you may be feeling. If you would like to contact me, please feel free to do so.
amnlupiano@comcast.net I am by no means an expert, but I am a survivor who decided to take matters into his own hands. I've never regretted that I did...
Good luck...and stay positive. You could have been diagnosed with much worse
