Hi there, my name is Lisa and I was diagnosed with an AN on my right side on 8/1/08. It was roughly 5mm x 10mm and completely intracanalicular.
I'm writing this for newbies because when I first found this forum, it scared me to death. Don't get me wrong, it was awesome to have a group of people gathered together who knew exactly what I was going through, but from nearly all accounts AND the other information I could find on the internet, it looked like the best outcome I could expect was hearing loss and permanent balance issues which would cause me to walk like I was on a ship in a storm for the rest of my life. If I was even less fortunate than that, I would be totally deaf in one ear and have some level of permanent facial paralysis, not to mention "odds-n-ends" side effects like dry mouth and dry eye and cognitive problems and all kinds of other things.
I am here to tell you it does not have to go that way! As you read through this forum you will hear MANY TIMES that each case is unique and that is absolutely true. However, you have some level of control over your outcome, and this is entirely
dependent on the surgeon you choose. I learned from many different sources that the surgeon you choose is more important than the approach you choose - experience level is everything.
I researched Acoustic Neuromas (anatomy, symptoms, side effects, etc), all the treatment options (surgical approaches, radiosurgery, radiotherapy, endoscopy, etc), and everything else you can imagine for at least 5 to 6 hours every day from the day of my diagnosis right up until a week before my surgery (I had scheduled my surgery several weeks before that, but old habits die hard - I have always been of the opinion that you can never have too much information). This is another thing you will see often in the forums: DO YOUR RESEARCH!!
After all of that research, I learned A LOT (and many times it did feel like too much information if you want the truth!!). Some very key basics are:
* The surgeon you choose directly
affects your outcome.
* The more AN surgeries he/she has done, the better. They need to have done AT LEAST 50-60 in their lifetime, and at perferably LEAST 35-40 a year. You want them to be as practiced at this as possible!
* The surgeon you choose is more important than the approach you choose. I spoke to surgeons from the House Ear Institute, UPMC, Duke (with Dr. McElveen), Duke again (with Dr. Fukushima), and MD Anderson and EACH DOCTOR gave me a different recommendation: Middle Fossa, Radiosurgery, Endoscopy, and Retrosigmoid (not in that order).
Okay, I'm getting to the point now... Please, please do not do ANYTHING until you have at least SPOKEN with Dr. Fukushima. I will post his contact information down below. He was my surgeon, and I can't recommend him highly enough.
Of all of the assistants I spoke with (and there were oh-so-many more than those listed above), Dr. Fukushima's Business Manager, Lori, was the MOST knowledgeable, the MOST helpful, the MOST patient, the most understanding of all of them, by LEAPS and BOUNDS. I will always be grateful to her for being SO WONDERFUL. She took care of filing our insurance and making SURE the surgery was approved by our provider. Not only that, but she worked very hard to make it in-network (we hit a snag on that but she is STILL working hard to get it straightened out). If there's a way that going through something like this can be made smooth, she does everything she can to make it so. Dr. Fukushima himself was a joy. But that's just personality we're talking about, when what matters is skill. So let me briefly describe my experience for you:
My surgery was on 9/26. I was walking the halls of the hospital by the second day after surgery. I left the hospital on the fourth day. During my stay the only drugs I had were steroids (totally typical and necessary to avoid brain swelling), and anti-nausea because the steroids made me nauseated for a few minutes after they were injected (they REALLY don't want you to vomit right after surgery). I believe that's it. I asked for Tylenol twice - EVER. I had the typical spinning/dizziness which is, I believe, unavoidable with an AN surgery due to the severing of the vestibular nerve - but by the end of my first week at home, I was walking around the block without holding onto my husband's hand (albeit still "dizzy" for lack of a better word, but remarkably improved by that point). I know I could have done that even sooner, but I was a chicken and wanted to play it safe (which I think is wise). By the middle or so of the third week, I was walking a 2 mile loop in the park by myself with my dog (a small Maltese, so no chance of being pulled too violently if he got excited). No staggering around, or anything like that. For a short time I felt like I was listing to the left when I walked, as if there was some kind of magnet pulling me, but that went away quickly. The park is practically across the street, but I did drive there, just to get some practice with driving. It was no problem. By the way: My sister came to help out for a several days on my third week of recovery. I was so improved by that point that we walked, talked, cooked, hung out and just had FUN.
I retained the hearing in my AN ear. More on that later. Also...NO HEADACHES
. I was very concerned about that during my decision-making process, so this is a really really big deal for me. The main issue for me throughout all of this was fatigue. I tired out easily, but I knew it was only temporary, so it really didn't bother me. I was just grateful to God EVERY DAY for my surgeon Dr. Fukushima, his Business Manager Lori, for being alive, for having my hearing, for being in no pain, and for recovering so rapidly and completely. I could walk! I could go up and down stairs! I could HEAR!
By the time Thanksgiving rolled around, I was in my 8th week of recovery. My sister came over again for the holidays, and we raced go-karts. I am still amazed. In all the research I had done prior to surgery, I was distinctly under the impression that I would never be able to do anything like that without getting terribly dizzy and nauseated. I thought I would never be able to ride a roller coaster again (one of my favorite things). I raced go karts with my sister and beat the pants off her! I went back to work 8 weeks post-op, and was back in the routine of putting in overtime (unfortunately) on my 4th day.
When I began writing this it was almost exactly 12 weeks post-op, and even before then it was odd to think that I ever had a tumor at all, much less brain surgery. I forget about it for long stretches of time and am only reminded when smart aleks decided to kid me around about it. And there's an indication for you of how well I am - I'm so totally back to normal now that people do feel comfortable kidding me around about having had brain surgery. Whether I think it's funny or not is another issue... :P
I had a follow-up hearing test two months after surgery. I retained ALL of my hearing. The audiogram came back IDENTICAL
to the one I had before surgery.
So let me tell you about Dr. Fukushima. He has performed over 50,000 skull based surgeries over all, but SPECIFICALLY AN surgeries: well over 1,200. By the time I spoke to him in September, he had already done about 150. THAT YEAR. That averages out to FOUR A WEEK. That's 200 a year. His statistics are BETTER than House Ear Clinic. He has NEVER had a patient die, or have a seizure. I don't have the notes I took during my consultation with him handy right now, but there were many other things that has never happened to his patients, which have happened to other surgeons (GOOD surgeons) patients. His hearing preservation rate is 85%!!!!!
I have to say it again: His hearing preservation rate is 85%. Of all the respected surgeons I spoke with, NONE of them could claim a statistic anywhere near that.
I don't recall offhand what the statistics were regarding facial paralysis, and I want you to know that what I've written here is accurate - so I won't guess. I will say, however, that the chances were extremely low, and whatever cases there may have been were temporary. He's had NO instances of any cognitive issues, which is a risk primarily associated with Middle Fossa anyway, due to the retraction of that portion of the brain.
Also important to me was that he was VERY forthcoming about his statistics. I couldn't get any of the other surgeons to give me a straight answer as to how many of these surgeries they'd done. At House Ear, no matter how many times I asked the surgeon how many he had done, he would tell me House Ear's statistics as a whole. Not his specifically. He would say, "We do on average over 200 surgeries a year here". I said, "Okay. Well how many have YOU done?" He said, "We are very experienced here," blah blah blah. Come to find out there are 6 or 7 surgeons there. That means that if you divide the number of surgeries done there among them equally, they each do about 29 a year. Which is pretty good. But it isn't 200 a year single-handedly either. Dr. Fukushima does as many AN surgeries a year by himself as House Ear does as a group.
That's a LOT of experience.
As I tried to learn more about Dr. Fukushima online, I found that he was a world renowned, world class neurosurgeon. An online discussion forum for neurosurgery students asked the question: "If you could do your fellowship with anyone, who would it be?" and Dr. Fukushima was one of perhaps 2 neurosurgeons who was mentioned more than once. In fact, he was mentioned several times as being these students' "dream" fellowship mentor. This was a small thing to learn, but very nice to know, and indicated that he was well known and very well respected. More telling was the fact that MANY other neurosurgeons websites and resumees listed the fact that they had, at some point, worked with Dr. Fukushima as a point of pride, and as a reason why they would be a good choice as a neurosurgeon. That said a lot to me, and my immediate reaction was, "why not go straight to the mentor instead of the student?" People fly from all over the world to have him do their surgeries.
I could (and probably should) go on and on here about him, but I'll just say this: PLEASE at least just TALK to Dr. Fukushima, or Lori before you do ANYTHING. Just talk to them. The one thing I want to be able to do as a result of going through having a brain tumor, which for me was the scariest thing I've ever had to deal with, is to help other people have an outcome like mine. And to help ease some of the fear. God got me through a lot of this in the most amazing way, and I believe it was God that helped me find Dr. Fukushima. http://www.carolinaneuroscience.com/index.htm
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