Jim ---- Dr. Goodrich says hi !
Steve:
I'm glad you were able to consult with Dr. Goodrich but sorry to learn that your AN is growing toward your brainstem and causing you the myriad problems you've encountered recently. Dr. Goodrich is correct when he says that - normally - a 2.2 cm AN would be a prime candidate for radiation. One other person I referred to Dr. Goodrich had a tumor approximately the size of yours. After a consult, Doctor Goodrich ruled out surgery for him, secured an immediate appointment with the radiation oncologist for the man and even escorted the fellow to the other doctor's office (it was in the same building). Dr. Goodrich is clearly not 'possessive' of patients and definitely not 'cut-happy' as, unfortunately, some surgeons are.
For better or worse, you do seem to be in a situation similar to mine when I presented to Dr. Goodrich, with the notable exception that my AN was 4.5 cm. During my surgery, when the doctor opened up my skull, he later told me that CSF literally 'gushed' out due to the fact that the AN was taking up so much space in that tiny area and compressing it. He was surprised my symptoms were not worse than they were. Dr. Goodrich also mentioned that the AN had likely been growing - slowly - for over a decade.
If you end up going with the debulking + radiation approach, it should work out well. The debulking almost immediately relieved all of my symptoms (loss of taste, rapid, unwanted weight loss, slight one-sided facial numbness, disequilibrium, severe fatigue). Although the follow-up FSR (3 months later) was tedious (26 days @ 20 minutes per day strapped to a metal 'bed' with my head bolted onto a rigid,'mask', making it unmovable, while the
Linux 'zapped' me in short bursts) I suffered no ill effects, save boredom. As my signature shows, both the surgery and radiation were successful. My symptoms never returned, I have full function of my face, eye and tongue, I regained just about all of my balance function and suffered no complications from either the surgery or the FSR. Like you, my hearing was a 'lost cause', based on the fact that the tumor had effectively compromised the nerve to the point that it became non-functional and cannot be reanimated. I cope pretty well with the SSD aspect and, fortunately, the hearing on my functioning ear is excellent. One learns to adapt. However, there are Bone Anchored Hearing Aids ('BAHA') that can alleviate some of the hearing loss, should you opt for one in the future., as many do, with much satisfaction, I might add.
Jan (
'leapyrtwins') is an enthusiastic BAHA-wearer and could give you lots of information on it's efficacy, should you be curious at some point.
I'll be interested to see what other doctors have to recommend as you go through the consultations. I certainly hope you end up with a successful outcome, whatever physician you chose. Admittedly, I'm a bit biased toward Dr. Goodrich, based on my high regard for his surgical skill and overall knowledge of acoustic neuromas gained from his decades of experience operating on them and, equally important, his caring, professional attitude and respect for his patient's concerns. Of course, I have to add the caveat that my good outcome cannot guarantee yours - or anyone's - but I'm confident that, should you choose Dr. Goodrich and his team, you'll certainly be in good hands. I wish you well as you continue your journey toward a final decision.
Jim
