Karen:
In my case, I never saw an ENT. My primary care physician was trying to determine the source for my presentation of weight loss (unintended), loss of taste and listlessness. After a simple blood test ruled out his first guess - a thyroid condition - he sent me for an MRI with contrast, telling me that he expected to see a sinus problem of some kind. Wrong. Instead, he saw a 4.5 cm Acoustic Neuroma tumor. He recommended immediate surgery and referred me to a local neurosurgeon. I was totally unimpressed by this particular doctor, who seemed almost intimidated by the size of my tumor and got evasive when I asked him how many surgeries of this kind he had performed in the past. I was outta there - fast.
Fortunately, the surgeon who had performed numerous spinal surgeries on my wife over the past 8 years - and whom she trusts - recommended a neurosurgeon in his practice who, he claimed, was an 'expert' on AN's and had vast experience in that speciality. So he did. Dr. Ike Goodrich (in his late 60's) had been surgically removing acoustic neuroma tumors for over 30 years and had performed literally thousands of operations of this type. He was very respected by all the nurses at the hospital where he performs his surgeries (a true sign of a caring doctor who respects his co-workers) and my wife and I were impressed by his humility and his caring attitude. It took us about 30 seconds to decide to engage him to perform the necessary microsurgery to remove my large tumor.
However, the good doctor surprised me a bit when he explained that in order to keep nerve damage to a bare minimum, he would not attempt to remove 100% of the tumor but would 'de-bulk' it, leaving the outside 'rim' (as he called it) which would, in my case, spare him possibly moving or cutting any facial/cranial nerves. He further explained that about 3 months post-op, I would have FSR to kill the remaining tumor cells. I saw his 'partner' - an experienced, confident younger physician - a radiation oncologist - who would work with the neurosurgeon to 'map' the radiation treatments I would be having. Dr. Goodrich also brought in an assistant physician to monitor my facial nerves during the surgery to further avoid any damage. I'm pleased to report that this was very effective.
Long story short: as my signature shows, I had both the surgery and the radiation as scheduled and everything went as planned. I had only very mild symptoms post-op; no CSF leaks, dizzyness or other problems,. I recovered rapidly. In September, I began the FSR treatments which were about 15 minutes per day, 5 days per week. They lasted for five weeks - and one day. I did not experience any negative symptoms from the radiation. I saw my neurosurgeon about 6 weeks ago, as scheduled. He had ordered a 'new' MRI scan to give him what he called 'a baseline' to monitor the remaining tumor, over time. I will have another MRI - and see my neurosurgeon again in April.
My 'case' will be followed by the neurosurgeon who operated on me and to a lesser degree by my primary care physician (who saw me in November). He just wants to 'keep an eye on me' - I'm in excellent overall health - but defers to the neurosurgeon for the real analysis and treatment recommendations. This seems fair to me. From what I've read here,
some ENT physicians can be an obstacle to getting an accurate diagnosis via an MRI (with contrast, of course). I'm confident that the neurosurgeon - a very dedicated physician - will not only be able to note any future problems quickly and accurately but will act on them, if necessary, with my consent, of course.
MRI scans usually cover all of the brain but in
sections, so they can be a bit confusing for a layman. At my initial consultation, my neurosurgeon showed me my scans and carefully pointed out the (very obvious - even to me) AN tumor and how it was beginning to compress the brainstem, which alarmed the doctor, although he kept a very calm, professional demeanor all the while. He hand- measured the size of the tumor as we watched and said it
had to come out, as soon as possible. To make his point, he scheduled surgery for a week later but, due to complications (not AN related) that ensued from a 'false alarm' that I won't go into here, the surgery was not performed until two weeks later. As I stated, it went well. I'm one of the lucky ones, I guess.
Jim
