ANA Discussion Forum
Useful Information => Physicians => Topic started by: LisaA on January 28, 2009, 02:47:12 pm
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.
While I agree that picking an experienced surgeon is important to the process, it should be noted that not everyone's outcome will be as spactacular as yours seems to have been. Equally important to the outcome is the location of the tumor itself; what nerves they're near, what nerves they've grown attached to, size, etc.. Each of those things can factor into whatever "issues" one has after surgery. Granted, you're better off with a skilled surgeon than one who is not, so I'm not diminishing that fact.
I could equally go on and on about my surgeon (Dr Vrabec - Methodist in Houston) and his nurse (Kathy), and have recommended him to others before. Finding a local doctor who's experienced with AN's can be possible for many of us; for those that it's not, your doctor, my doctor, Jan's doctor, Jim's doctor, etc.. can all be recommended for the results they've gotten with each of those people.
Others shouldn't get the mistaken impression that ONLY if they pick the experienced doctor will they have a positive outcome and will not have a negative "issue" after surgery. Even the best doctor in the world cannot promise that. You just have the best possible chance of a great outcome with an experienced doctor, experienced in AN surgeries in particular.
Just keeping it realistic for the newbies..
Thank you for sharing this. Your enthusiasm is amazing and thrilled that you were pleased with your AN treatment team/location/surgeon. We tout here that there has to be a comfort level between patient and treating physician and you certainly share how it was there for you.
As Brian notes, there are also other terrific AN surgeons out there... we hear of many talk about the teams at Stanford, Mass General and House Ear, just to name a few of many of the great AN surgical locations across the States. What you have shared is most valuable to those that are considering Dr. Fukushima..... and we also remind everyone that each decision is a personal decision for their own particular AN and situations (ie: financial, etc).
thank you for sharing this... for those interested in Dr. Fukushima, I know this will be helpful as part of their decision making process.
Hi Phyl and Brian,
Thanks for your comments. I agree that each situation is unique, and I hope I made that clear in the first portion of my post.
However, having said that, Dr. Fukushima is sought out by MANY who have been told that their situation is inoperable (not just AN's, he does many types of brain surgeries), and have had successful outcomes with him. My outcome was not based solely on the characteristics of my AN, but primarily on his expertise. Lori has stated that tumor placement is not an issue for him. Whether it is on the superior or inferior vestibular nerve, whether it is in the CPA or intracanalicular.
I was told several times that my AN was classic for a middle fossa. I also found in my research some articles implying that if the tumor is too close to the fundus, it is contraindicative to a retrosigmoid approach (which in actuality, I belive the surgical approach Dr. Fukushima used is technically a keyhole retrotranslab but don't hold me to that). These issues do not impact Dr. Fukushima's ability to operate, and to do so exceptionally well. My enthusiasm is not based only on my personal experience with him, but also on the experiences I have heard directly from his other patients. One of whom was told that her tumor (not an AN) was inoperable by many surgeons, and who had great success with Dr. Fukushima. There are many good, and even great surgeons out there, but Dr. Fukushima is considered to be one of the best in the world.
It should be clarified here that the damage the AN has already done is usually not correctable. In my research, and per several surgeons with whom I've spoken, if you've lost hearing or balance prior to surgery, it will not come back. Exceptions may be in cases where the tumor is pressing on the brain stem, and once removed, some people's balance has become better than before and/or they've regained some hearing.
My point in my earlier post was that regardless of your tumor's characteristics, choosing the best doctor possible clearly increases your chances for a better outcome. If you have a particularly vascular AN which is attached to every nerve possible, your outcome is still going to be better with an excellent surgeon than it would be with an average, or even good or great one. The better the surgeon, the better your possible outcome.
The last thing I would tell a newbie is that it would be okay to gamble on an inexperienced surgeon. Newbies - DO NOT DO THAT.
Outcomes are very individual too, which is why I posted some of Dr. Fukushima's statistics in the interest of giving some non-biased data, and why I suggested a consultation with him. I'm not trying to tell people that there's some kind of guarantee that you're going to come out like nothing ever happened, and his office would never tell you that. But it's a fact that he's performed well over 1200 AN surgeries. It's a fact that his hearing preservation rate is 85%. That statistic alone is evidence of the skill he possesses in operating around those nerves.
I would also never tell someone who is facing brain surgery to not do everything they can to get the best possible result - and that includes considering going somewhere that isn't local if necessary. If there was ever a time to think outside the box, this is it. I am not rich or well off by anyone's standards. I live in a small townhouse. Both my husband and I have to work. We don't have children (yet) to worry about feeding or clothing and we still just manage to get by. We're not destitute or anything, but we certainly don't have an overage of cash. That's a little bit personal to share, but I feel it's important to let people know that good surgeries are not just for the wealthy. My husband and I knew that we had ONE chance to do this right, and did not rule out the possibility of going to California and staying there for 2 weeks in order to go to House Ear. We were prepared to do what needed to be done, local or otherwise. We were prepared to borrow, to use credit cards, to harrass our provider...whatever it took. We were EXTREMELY fortunate that our insurance ended up "allowing" the surgery and that Dr. Fukushima was only 2 hours away, but we would have traveled to see him regardless. I'm all for keeping it real, but what's real is that this is going to be a once-in-a-lifetime situation for most people, and it can be life-altering. So check out all your options. Just brainstorm and see if you COULD travel to see a physician. Ask yourself what would it take for you to do that. Maybe you'll surprise yourself and find that you can make it work out. But don't give up on it before even truly considering it.
In a perfect world everyone's insurance would cover a surgery by him, but do NOT settle for your insurance company telling you yes or no. Talk to Lori - she will let you know if she can work it out with them - our insurance initially told us no, but Lori told us to let her handle it, and they ended up saying yes.
All I want to accomplish with my post is to encourage people to call his office in the course of researching their options. I am absolutely compelled to urge all newbies to do this because....because here I am - I've been through it, I've learned about it inside and out and it was a rough road. There is so much fear of liability out there that people who have some authority aren't helping others by doing something as simple as recommending a physician! One of my tactics was to ask each surgeon I consulted with which surgeons they respected the most. What I learned was that they usually either recommended colleagues within their network, or they hedged their answers. One surgeon (who is respected and mentioned in this forum once or twice) actually answered by telling me that he was great friends with so-and-so. What?? I don't care if you're friends with him for crying out loud! After all of that, I found that there's nothing out there to tell you who's the best at this. There's no "Top Brain Surgeons" list on the internet. There's no Consumer's Guide to Brain Surgery. There's nothing. Or there wasn't 4 months ago, anyway. I spent nearly $200.00 on some website which compiles physician information for you and even that didn't tell me everything I wanted to know.
And again, there are many good surgeons out there. And there are many great ones. But only a handful can be considered to be in the top few in the world. I'm not guaranteeing anything. I'm not promising anything. I'm simply saying this: Now you know; this guy is internationally recognized as being one of the best at this. Just check it out. In the process of talking to as many surgeons as you can, call him too. Send him your MRI and see what he has to say.
Just include him in your research.
I didn't have surgery, but radiation. I have to agree with you that the when I found this board I was relieved to find such informative and supportive people...but reading all about AN's (I was a newbie when I found this board) was overwhelming and very frightening.
The point of my reply to your post is that if I had been a newbie that was considering surgery, I would have really appreciated seeing a post like yours and would have contacted this doctor. I believe your post provides much value. I also believe with my other AN friends here that there are other magnificent doctors and others could have an different outcome than yours. However, I would have really appreciated knowing about a world-renowned experienced doctor. Others that follow in our footsteps will find your info invaluable, too.
Noted. Good Doctor in LA named Dr. Fukushima. Our intent was not to belittle your post by any stretch. I, too, would encourage any newbie to talk to several radiation oncolgists and surgeons to get a well-rounded view of their options. Our intent, too, however, was to let newbies know that you may find the best, most world renowned surgeon in the world, but your outcome is only based in part by that decision. What goes along with doctor selection is location, size, etc..
I'll give you that people should think outside the box when contemplating treatment options and that there may be someone extremely skilled outside of their normal area.. Etc.. But, I don't want any newbie getting from your glowing recommendation of your doctor that ONLY if they pick a skilled surgeon such as Dr. Fukushima that their outcome will be good and nothing but. Still, as great as he was, his track record for hearing preservation is 85%. In other words, 15% still lose their hearing. It happens. Even with the good ones, great ones, superp ones, and world renowned ones.
I just want to present a realistic wholistic view of this thing. I don't want anyone getting a pie-in-the-sky fantasy interpretation of what you wrote. We agree that a skilled surgeon should be used unconditionally and Dr. Fukushima is one of those skilled surgeons.
I agree that it can be comforting to know that such people exist (and who they are and how one might get ahold of them for a consultation). The expectation after surgery should be tempered with a dose of the reality that even a world renowned surgeon can only do so much, the rest is in the phsyiology of the tumor itself.
That's all we were saying; nothing more, nothing less.
You could have summed up your entire post by saying that you have a wonderful outcome with Dr. Fukushima at House Clinic and that he should be included in everyone research. All that is there, but clouded by the praises you put forth about him.
The point should be taken from all this that everyone considering surgery should consider Dr. Fukushima and do their own research into all available, and reputable options.
Just clarifying - Dr. Fukushima is located at Duke in Raleigh, NC, and is not associated with House Ear Institute.
Just out of curiosity, has this approach been used on all sizes of tumors? I noticed in your signature line that your tumor was very small. I could see how a very small tumor that is not putting pressure on anything "vital" would lend itself to a more successful outcome than others.
I'm in total agreement with both Brian and Phyl.
While I'm thrilled that you had a great outcome, if I didn't dispute your claim that your outcome is entirely dependent on the doctor you choose, I would be leading many newbies down the wrong path. As the ANA states - and the majority of us would agree - experience in treating ANs is key when choosing a doctor. And, as Brian correctly pointed out, size and location are also big factors that can't be overlooked.
All doctors - even the best - have cases that are less than 100% perfect. Lots of us have NO HEADACHES, no facial paralysis, no eye issues, no CSF leaks, etc., etc., Is this because our doctor was THE best? Realistically, probably not.
And while I recommend my two incredible doctors to anyone who asks, I would never even consider telling others that if someone else performs their surgery they'll have a less than stellar outcome :o which IMO is exactly what you are doing here. Talk about planting a seed of fear in a newbie's mind :o
I've said it numerous times on this forum, and I'll say it again today, there are many, many very qualified surgeons who treat ANs. Patients who choose local surgeons can, and do, have outcomes just as good as those who choose the "famous" surgeons with the high profiles.
Noted. Great Dr in Raleigh, NC named Dr. Fukushima. My bad, you mentioned House several times, so it stuck in my surgically enhanced brain. ;)
I reiterate that I was not putting down Dr. Fukushima, his clinic, or anything else about the outcome of your surgery. I vehemently deny the notion that was put forth (either intentionally or not) that NOT choosing him or another world renowned doctor, one cannot possibly expect a complication-free surgery. I'm living proof that stating such is not accurate. I don't want anyone misinterpreting the point of your post (as I see it) which is to say that Dr. Fukushima is recommended by you as part of one's own research, has an excellent statistical outcome percentage, and you whole heartedly endorse him.
I'm sorry if I offended you in the way that I presented my position, but I don't back down from that position. It should be universally true (as others will agree; as well as the ANA) that expertise in treating AN's (whether by surgery or radiation) should be a KEY thing you look for when picking a doctor to treat you. That, I think we all can agree on.
Wow, you researched at least 5-6 hours/day, every day? I don't think I can handle more than maybe 3 hours at a time, then I am ready to throw up! The news is just a little too intense to go on longer for me, then I need to sit down for a good game of Solitaire! I can imagine how elated you feel about your outcome and you absolutely have to share your experience to help others, thanks. Thanks also to the people bringing me back down to earth and take a deep breath after getting ready to pack my bags for NC instead of Boston. All info - good or bad - is good info for me and will in the end help me make a better informed decision.
To share good outcome is great.... we know each and everyone's bodies will react different to their own unique situation. Please note that any one particular AN treating physician is not the "whereitall" to our situations... and each patient should research carefully who and where and which procedure they will have done.
The ANA does not tout any particular treating location, physician or treatment option. Based on experience and individual situations, it encourages all patients to research. Lisa's sharing of her outcome is great.... and as we know, nothing is guaranteed. For those researching Dr. Fukushima, she shares her experience only, with some research she has discovered in choosing her treatment team. We encourage all those to do the same type of extensive research in finding your treatment team....
Many other terrific treatment physicians for AN also noted throughout this forum. Please research ALL treating physicians and locations and treatment options carefully!
I've said it numerous times on this forum, and I'll say it again today, there are many, many very qualified surgeons who treat ANs. Patients who choose local surgeons can, and do, have outcomes just as good as those who choose the "famous" surgeons with the high profiles.
I totally agree with that statement, Jan. My neurosurgeon is not nationally known but did an outstanding job for me, just as yours did for you.
I'm always pleased to read about another AN patient's good surgical results but while I have the greatest respect for my neurosurgeon, I realize that myriad factors were involved that combined to produce my excellent outcome. I'm sure you and others with a similar experience would agree. There is no 'Magic Doctor' that does what no other surgeon can possibly do. There are some outstanding neurosurgeons around the country and for those of us who find one, we should consider ourselves fortunate. I see no harm in praising a doctor that you are well pleased with but, as Brian has stated, we have to retain a hold on reality here to be useful to the newly diagnosed. Now, I think we have. Thanks for your post.
I had a nice, thought out reply to this last night and when I went to post - doh! My session had ended and I lost all that I had so carefully thought of and tried to post.
First of all, congrats on having such an excellent outcome of your AN surgery. Something we all strive towards, to be sure. :)
This post won't be as thought out or as detailed as the one I wrote (and lost) last night (American Idol is on soon ;)), but basically I agree with Brian, Jim (you state it so elequently), Jan, and others now who have posted. There are many surgeons who can and do have excellent results with AN surgeries. I'm sure many many folks on this site are pleased with their doctors and willing to recommend them. (Although I have not read every post, I have yet to read one that says "my doctor sucks, don't use him/her").
I was a bit taken back with the insistance that newbies MUST contact Dr Fukushima - my interpretation of it (whether intended or not) was that if I was a newbie I needed to get in touch with this particular doctor if I wanted to have the outstanding results that you did, otherwise....oh boy - don't even want to think of that!! And that no other surgeon could have the same experience, expertise, etc.
There are other doctors who's statistics are high (ex - mine was hearing preservation rate of 75%, CSF Leak 5%, Facial Paralisys 5% for a mid fossa) but as others have said, there are MANY other factors that weigh into the equation other than the surgeons experience and statistics.
Don't get me wrong - I think having an experienced surgeon is important - thus the recommendation to ask how many AN surgeries they do, but size, location, patient's health, etc. can and do have a great influence on a person's outcome.
I had started to respond to your post yesterday and ran out of time lbecause of an appointment I had. While I am thrilled for you, I have to agree with Brian, Phyl, Jim and Cathy. Your doctor is, no doubt, a very experienced, reknowned physician and probably a wonderful person as well. However, as the others have pointed out. while it is imperitive to have experienced physicians, There are many wonderfully talented and experienced doctors with abundant experience. As everyone has also pointed out, surgical outcomes are also a result of size, location and how sticky the tumor is. So, I'm glad you had a great outcome and glad you have such confidence in your doctor and have such a high opinion of him and recommend him so highly. I am extremely grateful to my wonderful doctors too, and also had a great outcome and would recommend them in a haertbeat.. My point is, there are many wonderful doctors out there who have grat reuptations and great statistics, not just ONE that everyone MUST see.
Wishing you continued good healing,
Still really curious about size and this procedure...anyone know?? Lisa, where are you??
I'm here, just a little bewildered...
When you posted your question the other day, I wrote to Dr. Fukushima's office. There've been so many comments about needing to be "realistic" that I had to ask whether I was an exceptional case for him.
What they said was that "the size of the tumor matters with his percentage of hearing preservation, but your outcome is typical of Dr. FukushimaÃ¢â‚¬â„¢s surgeries. Location or surrounding nerves can play into the result, but with his skill these are just minor issues. The skill of the surgeon is everything."
I'm available at ANY TIME for people who have questions or just want to talk to me - feel free to e-mail or private message me. If you'd like we can exchange phone numbers and chat about it.
I am so glad you had such a great outcome to your surgery. I had GK, but I can only imagine how scary the prospect of surgery would be to a newbie. Your post would give anyone reading it a lot of hope and comfort. Your enthusiasm is refreshing.
When I was diagnosed with my AN (1.7 x 1.1) my local neurotologist told me that I would almost have 100% hearing loss with surgery. It seems that from almost everyone else's posts that I've read, or articles that I've read...this does seem to be the case. So, to me, an 85% saving hearing preservation rate sounds like a big thumbs up to me.
However, I wonder what this doctor does that is different from other docs that his hearing preservation rates are so high. When he quoted you this statistic, did they include all AN surgeries, no matter the size? Or perhaps the 85% hearing preservation rate doesn't encompass only the level 1 and 2, but any hearing left at all? I'm not discounting that this is a wonderful doctor, but I guess it wouldn't surprise me if that particular statistic might be skewed a bit. Did he have any published studies or anything? I'm really not trying to be devils advocate, and I'm not dismissing the fact that he's a tremendous doctor and I would go seek his opinion, I just would want to know a bit more.
That's a good question, and I'm not completely sure, but It's my understanding that the 85% statistic is across the 1200 AN surgeries performed. Dr. Fukushima has invented many of the instruments he uses and I think this plays a part in his success - he explained this to me a little bit in my consulation, but I no longer remember the details. I think I have a recording of the consultation somewhere. I do recall him mentioning at one point that many surgeons use a drill-type instrument when opening the ear canal to reach the tumor - the instrument he uses is not a drill and is much safer. I don't recall if he invented that one or not, but many of the other instruments he uses are of his own design.
I'll see if I can dig up that tape.
I've never heard the 100% hearing loss statistic except in relation to a Translab. For Middle Fossa and Retrosigmoid - typically I've heard 50%-60%. I was also told by one of the other surgeons I consulted with that a good ABR result (Auditory Brainstem Response) is good news in terms of hearing preservation.
Thanks for your reply. So ANY size tumor - even the giant ones - can be removed this way. I guess that I really don't understand the procedure...I went on the web-site, but I just saw stuff about him.
I have also only heard the 100% hearing loss for the translab. approach...
Just as an aside, I was told that even with having my retro surgery, there was about a 10% chance of having useable hearing after surgery because of the LOCATION of the tumor. They're wrong that skill of the surgeon is "everything". It's only part of the equation, in my opinion.
Again, great outcome, hearing preservation, etc.. All great news and I'm thrilled for you. I'm guessing that there are many factors that went into that outcome and that only part of it was surgeon's skill. Just a hunch.
I find it fascinating that this doctor has invented some of his own surgical tools. As far as surgeon's skill goes...perhaps this doctor does have an edge on other wonderful doctors because of his methods that he uses to open the skull. Perhaps his surgeon's skill is more than most for his successful outcome. This isn't to say that other's don't have wonderful doctors, but if this particular surgeon is discovering new ways to do surgeries AND his outcomes seem to be higher than the average great surgeon...why discount that? He just may be on to something...sort of like new endoscopic surgeries with less downtime. There's always room for improvement with AN treatments. I'm just saying that perhaps Lisa is right. Maybe her doctor has invented something that raises the statistics with AN removals.
As far as hearing loss, I know I haven't paid as much attention to the stats as those who have had surgery. I just know my Neurotologist said 100%, and it seems that almost everyone that I read about on this board says, "I did lose my hearing". I'm sure there are thousands that never frequents this board that have the other approaches that have retained theirs, so I speak from just what I've been told and other's experiences on this board. Sorry if I mislead anyone.
We don't discount LisaA doctor, results, etc.. What we take issue with is the appearance that if you're looking into surgery that her doctor is the ONLY person to talk to and that you'd be a fool if you choose anyone else because of his wonderful (statistically based) outcomes.
Like you, I'm sure there are many that have hearing preservation (obviously LisaA is one of them) but I believe that there are others on this board. It depends on how one defines "hearing preservation". At least one member kept SOME hearing, but needed a hearing aid for it to be actually useable. Others may have had some hearing preserved, or even the hearing nerve itself preserved, but in order to actually USE it they needed a hearing aid.. Technically, it's "preserved" but in reality it's not.
My guess is that either her doctor is very selective about who he does surgery on (thereby inflating the preservation stats) or through creative marketing it's called "preserved" if ANYTHING is left whether or not it's actually useful to someone or not or if it requires a hearing aid to be useful.
If he's truly onto some sort of technique or tool or something that increases the positive successes of his patients, then I find it hard to believe that others wouldn't find out about what they are and start to incorporate them into their own practices. I'm with you, and everyone else, that improvements to treatments should, and will, be made over time. It will be someone like, possibly, LisaA's doctor who find a new technique or tool to help make it better.
I'm quite certain LisaA's doctor is a wonderful surgeon and person, and who can argue with the success of LisaA's surgery as a testimate to his skill. Our entire point is that while he's skilled and nice and all that, his skill is only part of the equation in this for someone else. If he could get those results 100% of the time no matter the size, no matter the location, etc.. THEN I would agree he's the end-all, be-all of AN surgeries. But, the reality is that he doesn't and nobody does. BECAUSE surgeon skill is only PART of the equation.
Look at it this way.. Debbi has longer term facial weakness than I do. My surgery was 1 week AFTER hers. Is her doctor less skilled than mine? I don't think so. Her tumor location probably had something to do with it. (Sorry, Debbi)
Hopefully, that makes sense to everyone reading..
At least one member kept SOME hearing, but needed a hearing aid for it to be actually useable. Others may have had some hearing preserved, or even the hearing nerve itself preserved, but in order to actually USE it they needed a hearing aid..
My hearing was preserved and I don't use a hearing aid. Granted, I DO have a hearing loss (I did BEFORE the surgery) but I can still hear out of it - even on the phone - just not as good and a little tinny. Doc said that a lot of people with my level of hearing loss do just fine without a hearing aid, but if I decided to persue that, I was a good candidate. ;D
Point well taken. You have hearing preservations yet you have hearing loss. Interesting conundrum.. Would you be counted as "preservation" or a "loss" person.. ;)
And, that begs the question of how much hearing has to be lost in order to be considered a "hearing loss" statistic?
Ahh, the wonderful world of ANs...
You have hearing preservations yet you have hearing loss. Interesting conundrum.. Would you be counted as "preservation" or a "loss" person.. ;)
And, that begs the question of how much hearing has to be lost in order to be considered a "hearing loss" statistic?
See, as a newbie and watch & waiter, this is where I spend my time.
As a newbie, I have been seriously challenged by the mysterious inconsistency of research around acoustic neuromas. While I will spare you all the details that confuse me, I will address this one from my perspective and my range of limited research. I would appreciate any guidance offered on understanding this stuff!
I did google this physician - and he published a research paper about ANs and hearing preservations in 1997. I admit a long time ago - but it is all I could find. It also only addressed a small population of ANs - about 60 where either the middle fossa or retrosigmoid was done - the 'hearing preservation' surgeries. So, while the 1200 is thrown around - and don't doubt the doctor has done that many (or many more) - this study by this physican had a small population. I will put the link to the 'summary' below.
Here is a short piece, relevant to this discussion of that study.
This report reviews acoustic neuroma outcomes of individualizing the surgical approach to patient and tumor characteristics. This study reviews 60 consecutive hearing preservation acoustic neuroma surgeries in a total series of 330 acoustic neuromas. Tumor sizes ranged from 0.3 to 4 cm in patients ranging from 23 to 74 years of age. Middle fossa surgery was performed in 57%, retrosigmoid in 43%. Overall, measurable hearing was preserved in 77%, and useful hearing in 67%. Among middle fossa cases, 85% had measurable and 74% had useful hearing. Among retrosigmoid surgeries, 65% had measurable hearing and 58% had useful hearing.
I would assume (never a great thing) that the stats quote by Lisa are based on this study - 85% had MEASURABLE hearing. This is an obviously different therm than useful hearing. As I break down middle fossa:
15% - have no measureable hearing - in my words, if they stood beside a lawn mower at 90db, the wouldn't hear it.
11% - have 'measurable' but not useful hearing - that infers that they hear between 50db-90db (i.e. PTA) and understand between 5%-50% (discrimination) of words at that db. (some lack of distinction because if your PTA is 55db but your discrimination is 85% you still have meaurable but not useful hearing ... still figuring that one out). As a benchmark - 60db is 'normal conversation'.
74% have useful hearing - which divides into 2 categories the 0-30db and >70% discrimination and 30-50db and >50% discrimination. It would be very useful to have more of a breakdown in that department but that isn't available in this piece (or in many other pieces either - alas one of my pet peeves).
Again, as many have mentioned, there are so many conditions that affect the ultimate outcome. In broad strokes, I believe that middle fossa is principally (but not exclusively) for small ICA tumors which, in general, by defintion have superior hearing than the larger CPA tumors .
So, I would suggest that dog lover (CAthy) and Lisa were part of the majority who maintained useful hearing, and more than likely based on their descriptions, easily fit in the Grade 1 class of <30db >70% discrimination - which is utterly awesome!!!
I have read a few House papers as well (again, only the summaries - so rather limiting) and their 'rates' are lower - but the one study I read had a much much larger patient population than this study. And, while I was far from a star in my college stats course, would suggest that the 85% of measurable hearing versus I think about 68% at house is potentially statistically insignificant. Just a guess - but when you have 57% x 60 patients (i.e. 34 patients) versus 151 patients, that stats will be more indicative at 151 patients. I know there a few scientists on this board so challenge away at my stat assumption.
Someone else brought this up - it is my understanding that translab is focused towards ANs that are large and where hearing preservation isn't a goal (either because of poor hearing pre-op or a large tumor where hearing preservation isn't likely). I have gandered that translab (and please correct if incorrect) that this is the least likely approach to have other complications - facial nerve, headaches etc. so if hearing preservation isn't part of the goal, this is the best approach.
I am a newbie with a small ICA tumor who is watching for now (gosh, I am getting impatient though - I don't think I will pass this watching crap!) so am learning a lot.
I am also Cdn and not willing to foot the bill for a bit trip to a US doctor - so will be sticking to the Cdn scene. I am not concerned that I won't find an excellent surgeon (if that becomes my choice) here whose rates are comparable to either Fukushima or House.
Fukushima - Research study:
House - Reserach study - middle fossa:
PS - because I just have to vent - what the heck is 'actuarial' assumption on radiosurgery - frig, I see no place in 5 year 'actuarial' tumor control rates - if the technology has been around for 30 years, get REAL STATS PLEASE!!!! Sorry - had to vent.
OK...I am blond and tired, but I am still confused (actually that is how I spend most of my life ;D). I went back to reread LisaA's original post & I still don't know what approach was done. Obviously it was NOT translab!! But what was it???
Middle Fossa - so higher up, brain retraction, bigger shave area (sorry I absorb details) - it is the 'primo' hearing preservation option, principally focused on IAC tumors - the small suckers.
THANK YOU!! Where did I miss that??
I missed the surgical approach too, but knowing it was mid fossa explains a lot. Mid fossa approach is generally THE way to save hearing during AN surgery. Unfortunately, mid fossa isn't an option for lots of us - I know it wasn't for me.
lots of docs invent surgical instruments. I believe that Dr. Richard Wiet (member of the ANA Medical Advisory Board and host of the ANA Symposium for 2009) has invented instruments used in AN surgeries also.
I'm still with Brian, no one can definitively say that the skill of the surgeon is "everything". Doctors, though highly trained, are human just like the rest of us. They cannot guarantee anything 100% - and any doctor worth his salt will tell you just that. Thankfully, my neurotologist did; because I have a real need to deal with reality, not fantasy.
Before I go to bed (and stop delaying by googling stuff!) - I had to use the search function to find mid-fossa (or middle fossa - which one is it?) in Lisa's original (and second post).
It was truly possible I just assumed it was - I couldn't find it on when I went back to check either.
However, I too am blonde, or at least chemically blonde!
Cathy had middle fossa, it's in her sig line. But, LisaA never said what approach was used. Or, am I as blonde and tired as Kay? ;)
I'm glad that I am not just losing it...
Well... that's for another thread all together, Kay.. ;)
Btw, good breakdown, KeepingUp. I find stuff like that fascinating to read. After going to one of your links, I went on my own clicking binge at the site... I found stuff on BAHA, Middle Fossa, etc.. Pretty cool stuff! Thanks!
I'm not blonde - leaning more towards gray each day ;) - but I AM tired!
mid-fossa and middle fossa are both the same; the former is just an abbreviation of the latter. Kind of like retrosig is short for retrosigmoid and translab is short for translabyrinthine.
Here's info on mid-fossa "borrowed" from my neurotologist's website (www.chicagoear.com):
Middle Fossa Approach
In the middle fossa approach, the bone is opened above the ear and the bone overlying the tumor is removed. The inner ear is not entered. Therefore, hearing preservation is possible. The middle fossa approach is most suitable for small tumors with good hearing.
Point well taken. You have hearing preservations yet you have hearing loss. Interesting conundrum.. Would you be counted as "preservation" or a "loss" person..
LOL. I don't know. Is the glass half full or half empty?? ;)
Well, I'm adding my 2 cents late, for what it's worth.. (probably about 2 cents).
I did not use the same doctor as Lisa A. However, my surgeon is highly regarded, exceptionally skilled, extremely gifted and is just an all around good guy as well. He has also patented some of his own tools of the trade used during AN surgeries, specifically real-time nerve monitoring, which I was happily a guinea pig for during the testing stages. ;D He has also published much of his research. He has also never had a patient expire or have a seizure and has a very low incidence of CSF leaks.
I do have facial nerve issues, but God himself could have done my surgery and it would not have mattered, as my AN was totally adherent to the facial nerve and it was so damaged prior to my surgery that there was not much hope of it ever working. I had facial nerve symptoms prior to my diagnosis, which is was sent me to the doctor in the first place.
As everyone else has said, of course I'm glad that some people come through this experience pretty much none the worse for the wear and I'm always thrilled to hear of a perfect outcome. The way I see it, the fact that any of us are here to discuss this is a pretty darn good outcome. The fact that I'm alive and well is reason enough for me to sing the praises of my surgeons and I'm pretty much convinced they walk on water. I have a feeling a good percentage of us feel that way about our surgeons. My doctors were right for me and other people had doctors that were right for them. That doesn't make someone else's doctor wrong because it wasn't the same one I chose.
I don't think any surgeon goes into an AN surgery recklessly - they want a good outcome just as much as we do, but some things are just not guaranteed - like hearing preservation or facial nerve weakness. Sometimes the tumor is in control and the best doctor in the world can't change that.
I think the most important thing is that each patient find the doctor that is the right fit for him/her.
p.s. Kaybo - you ARE losing it. ;)
I lost something...what'd I lose?
I believe that many of us can agree, based on LisaA's outcome and based on the work that Dr. Fukushima has done, that should anyone inquire if we know anyone in the Carolinas that seek the info, we can point to this thread. How one interprets his work/research is up to them and if they decide to follow up on it, we are all supportive of that decision. I would like to thank LisaA for sharing this with everyone here.... and for everyone's inputs about this subject. I know I will reference folks to this thread, if asked, as I believe it will help those doing extensive research to determine the best approach they should have for their particular situation, regardless if they choose Dr. Fukushima or decide on elsewhere.
LisaA, I would also like to move this to the "Physician" forum where it is more appropriate... ok with you? :)
BTW, my chemical blonde needs a touch up.
The surgery I had was not a middle fossa, but rather a retrolab transtemporal approach.
I'm running a little behind on reading posts as I have not been well for the past few weeks. Like Lori, I would also like to add my 2 cents worth. Dr. Fukushima also did my surgery and my outcome was not nearly as bright (though I place absolutely no blame on the doctor). He was absolutely sure he could preserve my hearing and thus did an occipital approach. No such luck for me though. It didn't work out that way. In addition, I ended up back in the hospital a few days after I came home due to to brain swelling. A month after my surgery I developed a very serious infection in my incision and had to be hospitalized again, more surgery and six weeks of IV antibiotics at home. My balance is impaired and I have the "wonky head" anytime I'm in an environment with a lot of sensory stimulation.
I agree with everyone here, the outcome is based on the tumor, the individual, and to some degree on the surgeon.
Linda in WV
HILisa!! you are a godsend!! Dr Fukushima is also doing my surgery! and I loved reading this post. Thanks so much for the detail and thought you used, those were the exact things that I was thinking!! Looks like zI will go in around October, but I emailed through his website and wouldn't ya know, Lori emailed me back! I was floored!! I may actually sleep tonight!!! Thanks again!!