ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: ToneControl on September 03, 2007, 11:38:40 pm
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Hello All,
Robert here, posting from Spokane, WA. Figured I should introduce myself since I've been lurking on the board for the past few days, since seeing the results of my MRI and being told I have an AN. Here's the background:
1cm AN (located on the balance nerve, according to my doctor)
began noticing some hearing loss a couple months ago (tested down about 30dB on audiometry), having some tinnitus issues
diagnosed last Wednesday after spending six weeks being told it was probably a sodium issue in my middle ear
now the fun part:
I'm 42, and have had good health over the years, for the most part
I've been working as an engineer/producer in my own recording studio for the last eight years
I think the shock of the diagnosis is finally wearing off, and I am in the process of exploring my treatment options. When I left the doctor, with my 2 year old and 4 year old in tow, I told him I was leaning towards "watch and wait", as he had said that he estimated this thing has been growing in me for five years, and that I didn't need to rush into a decision.
Now as I start researching all the myriad arguments of surgery vs. GK/CK, I feel more inclined to make a decision and get going. My biggest concern is doing whatever has the best chance of preserving hearing in that ear. Of course, the prospect of losing hearing in one ear is a life altering event for anyone, but for me, it could very likely be a career ender as well. I find it ironic that a week ago, I had a major label artist in my studio, and was being complimented by his guitarist for the depth of sounds I was getting by stereo miking his amp, only to turn around and be told two days later that there's a 50/50 chance I will end up deaf in one ear. I try to tell myself that Phil Spector managed to make a decent career out of recording in mono, but it's small comfort (not that I would trade places with him now!).
So... my current line of thinking is: rather than wait six months for another MRI, realizing that while the tumor is likely growing slowly, my hearing will only continue to deteriorate in the meantime, I should look seriously at surgery (middle fossa approach?), or GK/CK. I've seen odds for hearing preservation ranging from 50% (or lower for larger tumors) up to 78% at Seattle Ear Clinic. I'm still looking for long-term preservation rates for Gamma Knife, or Cyber Knife. It seems that there is a slight chance of regaining some of what's already been lost through surgery (along with the attendant risks), whereas with radiation, things won't improve, and may continue to decline years down the road.
I already have a sincere appreciation for all the love and experience that is evident on this board, and am looking for input from those that have gone before. Okay.. enough rambling for now, time to get some sleep. Thanks so much!
-robert
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Hi Robert,
Welcome to the forum, but sorry you ended up joining our exclusive club. I know that other folks on this forum will chime in soon and tell you some statistics and opinions on your questions. I am sorry that this AN that you recently discovered you had is something that will endanger your career. It's bad enough to get this crazy thing and then have it compromise what you do is like kicking you when you're down! There are several folks on here who have had treatment in Seattle, so they can certainly tell you of their experience. I had GK here in the Portland area and so far so good.
My hearing was pretty well compromised in my AN ear by the time I got to treatment, so there wasn't a lot of talk about hearing preservation for me. Since this is vital to your career, I say follow your instincts and if that is telling you to do something now...then you certainly can. It certainly won't get better on it's own and will only get worse (or it might stay the same, many on watch and wait report no changes)..so you'll have to make a decision one way or the other eventually. Good for you for planning ahead, I guess. ;)
Well, yes, it's late and I'm rambling...so take care and good luck to you in your eventual treatment and recovery. This is a real bummer trip to be on, but the company around here makes it a lot better!
Take care,
Sue in Vancouver USA
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Robert,
I'll add my welcome to our fun group that nobody wanted to be a part of ;)
You've obviously started doing some good research and are asking a lot of the right questions. I do want to address one comment in your post that I am curious as to where you heard it and I would suggest is incorrect.
It seems that there is a slight chance of regaining some of what's already been lost through surgery (along with the attendant risks), whereas with radiation, things won't improve, and may continue to decline years down the road.
1) there is very minimal probability of of regaining what hearing has been lost with either option, but from what I've seen those rare occasions have more often occurred with radiosurgery, not surgery. Your most likely best outcome is to have the hearing remain unchanged after treatment.
2) I'm not sure where the studies are that support that hearing frequently disappears some years after treatment. I haven't seen them and I'm currently 6 years out from my CK treatment with my hearing still at pre-treatment levels. My 2 cm AN was given about a 20% chance of saving usable hearing with surgery and from what I've read over the years I would guess a 1 cm is somewhere around 50/50. Again, those are odds for maintaining usable hearing , not necessarily current levels. On the other hand Fractionated Radiosurgery in a study done recently at Stanford puts maintaining current hearing in the low 70% range.
There are no guarantees and with either approach and both bad and good outcomes can occur, however, the studies are pretty compelling that hearing preservation has higher odds with radiosurgery as the AN size increases. In mm size ones, both options are probably pretty comparable, but at 1 cm, 2 cm , 3 cm the split becomes pretty dramatic.
Mark
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Robert,
I am so sorry. I can't imagine the stress you must be under in that this can affect your career. I guess my mode of thinking is similar to yours in that wouldn't it be better to attack this thing while it's still smaller.
Mark,
Regarding your last statement - studies are pretty compelling that hearing preservation has higher odds with radiosurgery as the AN size increases. In mm size ones, both options are probably pretty comparable, but at 1 cm, 2 cm , 3 cm the split becomes pretty dramatic - I had not run across that in all my reading. Can you direct me to articles regarding that. Much appreciated.
Sandra
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...my understanding is that hearing preservation possibilities are pretty good with rads given all the possible variables that go into hearing....
here's one study...
http://www.ncbi.nlm.nih.gov/sites/entrez
it was published this year but covers a study over a span of years slightly before....
a number of studies do say that 100% assuredness with any An treatment is not there.... but you will find that some people have retained their hearing from a few types of treatment for an An.....
there are no guarantees with any treatment as far as I know although some definitely don't such as trans lab, and some are better at it and retro is a possibility and some of those treated with rads still can lose theirs over time down the road or maintain it .... but i'd say that if there is a chance of saving it or keeping it etc. I'd go for it given that all other things are also positive in that choice for you...
all the best,
windsong
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Hi Robert,
Glad that you started posting. There is so much to learn!!!
I wanted to tell you that my tumor was 2.5 cm and I had retro-sigmoid surgery. I really lost most of my hearing, though I still have a little, the last 6 months before I was diagnosed. I have the same amount of hearing left after the surgery.
The good news is that you can take time to figure out what do. Good luck.
Pattibobatti
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Hi Robert and welcome......
I am sorry about your diagnosis but glad you found us.
See as many doctors as you need to. Some people get two opinions for radiosurgery and two for microsurgery. You will
know when you have found the right treatment/doctor.
Good luck, Kathy
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Robert,
Sorry to hear that. I found out mine about 2 weeks ago and have done some researched though this site and by talking to others on this site who are great help.
In my case, I've lost most of the hearing in the left ear and also with some facial nerve issue even though mine is only 6x10mm and who knows what size it is now... The symptoms seemed to come pretty abruptly for me, even Dr. Friedman at HEI was surprise to see my losing most of the hearing within 4-5 weeks.
First I've had tinnitus over the last 5 years, but just 10 months ago, my hearing was basically the same on both ears (only down a little around 4k). Then, 6 months ago, I started hearing my heart beats and blood pumping. My ENT said that it was OK (darn this guy!!) since there is a large blood vessel next to the inner ear. If he had sent me to have the MRI then I would have been able to saved my hearing.
Now, since my symptoms seem to get worse, can't sleep too good at night (some pain, facial twitching, some numbness, etc..), I can no longer stand this and so I'll probably go the surgery route to remove it before I lose something else...
It is kind of hard to know what will happen with the tumor and it is just like a guessing game, no one knows for sure including the specialists or expert.
Hope this helps.
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Hey Robert: Uck: the size you have dude is really awkward- you really are at a crossroads. when I was diagosed at 2.5 CM hearing preservation on surgery really wasn't an option, with cyber knife I still have hearing- although it is only 50% ( and that was prior to cyberknife treatment). When your hearing test was done, did they rate your speech discrimination? Out of the three frequencies measured for hearing (or at least that's how I word it), my "volume" frequency was 50% off, but my speech discrimination was 92%- for the cyberknife guy that in particular was a compelling reason to opt for radiation rather than surgery.
As a musician, I'm really sorry this happened to you. I know however, you will find the best solution for you- remember you are only in week 2 of the diagnoses. With your level of research- I estimate you will have a better desicion in about 6 weeks or at least after 2-3 consultations. It will become apparent what you should do, but unfortunately, it's not an instantanous answer. Good luck, take care, Annie
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Thanks for the replies and words of encouragement, everyone! I'm still considering my options; got my MRI on CD today (thanks for the tip!), and sent an email to Dr. Mangham at Seattle Ear Clinic a few days ago. I was hoping to hear back by now, but I suspect he is a busy guy.
Still leaning toward surgery as the best route to saving what hearing I have left (which is most of it still, thankfully). My ENT said it probably good that I pay so much attention to my ears because of my work, so I became aware something was wrong sooner, perhaps. Small comfort, I suppose, but I'll take it.
I was looking up my audiograms, and here's what I found:
100% speech discrimination, PTA avg. -40dB on 6/20/07 (tested using inserts)
92% SD, PTA avg. -30dB on 7/18/07 (tested using phones)
I am hoping to get this thing before it takes too much of what I've got left. My left ear is only down 5-10 dB avg., which is pretty darn good after 12 years of rocking and rolling. I was told that there can be 8-10 dB variation between phones and inserts, so it's hard to tell how much things have changed from the first test. I'm scheduled for another test and visit with the ENT on the 21st. Hope to know more by then, and be able to make a decision.
Thanks again for all your input. Keep fighting the good fight.
-robert
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I'm going to throw in another pitch for considering CK before you choose the surgery. I think you should at least get an evaluation of it before you decide. If you go to the cyberknife support group, you can find the email address of Dr. Chang at Stanford. If you contact him, you can send a CD of your MRI and your audiology report to him for a free review. They also have a forum where you can post questions to the doctors. http://www.cyberknifesupport.org/
My stats: age 53, AN under 1 cm, PTA about -50 dB, SD about 85%. My ENT suggested considering radiation, although he himself does only the surgeries. When I hunted around, it seemed to me that radiation offered equal or better hearing retention, with less risk of serious side effects. And of the bunch, CK seemed to be the best system for getting radiation treatment. So I guess I would question your statement "Still leaning toward surgery as the best route to saving what hearing I have left" - I think CK might be better.
On another note, it occurs to me that unless you lose all your hearing on that side, you should be able to rig up a set of headphones with that ear "equalized", so that you can still hear the balance and tone of the sound correctly. Wouldn't that be possible? I am assuming that you have headphones glued to your head while twiddling the dials in the recording studio, of course, because that is how I picture recording engineers working.
Best wishes,
Steve
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Hi Robert,
Just found this, thought I'd throw in that Jill Marie is in Spokane and there's a bunch of us over here in Western Washington if you need help! I didn't go to Mangham, wasn't covered by my insurance, but know he's considered the best in this area. They will also consult for radiosurgery too...if you have any questions about him, consult Raydean on the forum, her husband Chet was treated by Mangham for many years. Feel free to PM me if you or your family want/need support while in the area!
Kathleen
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Thanks Steve and Kathleen!
I'm going to take your advice, Steve, and try to get a consult with Chang for CK. The good news I got today is that it looks like my insurance will cover it (Premera/MSC), even out of state. Also, my sister is in San Francisco, so I would be able to have a place nearby to stay. I admit, I've thought about career workarounds like you suggest Steve, and it's true I could probably rig some compensating headphones. It would be tough to do with speakers, however. I told one client the other day about my situation, and he sounded like he would still work with me even with only one ear. I'd have to change to name to Van Gogh Recording, I suppose :D
I truly appreciate the offer, Kathleen. I'm fortunate in that I also have family in the Seattle area. My mom is in North Bend, at least until they sell their house (anyone interested in a beautiful home on five wooded acres ;)). I'm hoping that if I end up seeing Mangham, I can do some recuperation on the West Side before coming back home. I had noticed Jill Marie was in Spokane as well, but I haven't had a chance to try to contact her.
Thanks again for all the support. I'll keep throwing random thoughts out as I sort my way through all this...
- robert
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Funny, Van Gogh recording. I like it ;D Glad to see your sense of humor is still intact, will take you far! ;)
Like was mentioned earlier, what hearing you have going in is the most you can hope for coming out.
I wish you all the best in finding the perfect treatment option for you!
M
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Thanks Batty,
As soon as I hit "post", I thought "I may be running the risk of offending here...", which of course was not my intention. But I figure trying to find a laugh in this here or there is better than the alternative. Thanks for the well wishes!
- robert
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Robert-
I think "Van Gogh Recording" is very funny, too. And, as battyprincess said, better to keep one's humor in all this. I'm especially glad that you're able to maintain a sense of humor, since the AN affects your identity probably more than others of us.
I'm in western Washington, Ocean Shores. I went to the Univ. of Washington, which has a team of doctors and others who specialize in acoustic neuromas. They arrange their schedules so when you have an appt, you meet with ALL of them. The meeting I had with them gave me a pretty full range of options, with no one pushing one treatment over another. The doctors are Larry Duckert, Robert Rostomily and Jason Rockhill. They do microsurgery (both kinds, I believe) and Gamma Knife. I didn't ask about Cyberknife, but they seem like knowledgeable folks and are very helpful, so it might be worth a call to Dr. Duckert to ask if they might be able to help you make a decision including the CyberKnife option.
Below I've cut-and-pasted what Raydean, another member of the ANA Forum who's from western Washington, told me when I was first diagnosed, giving her recommendations. It's generally considered in the Forum that Raydean knows what she's talking about, so I thought it might add to your "knowledge" base of Washington resources. I'm glad you have family in the Seattle area, since bigger cities are, I think, going to have medical teams with more experience. Spokane ain't close to Seattle, but it would be worth the trip, I think.
This is what Raydean said:
"Going form the perspective of experience with AN's At the top of my list
would be
Dr Sandra Vermeulen (sorry only have her fax number) Dr. Vermeulen is a
board member of IRSA and is very knowledgeable, . I would trust her with
my life . If I was going to go with radiation she would be the first person
I'd talk to. She'll help in any way, she'll be up front with you and you
can easily talk to her.
DR Charles Mangham of the Seattle Ear Clinic. Doctor Mangham is probably
the most experienced Doctor in the Seattle area for the surgical option.
(www.seattleear.com for his website and contact info. He Doctor Mangham
is a neurotologist that specializes in AN's. The only complaint that I've
heard is that some people have found him difficult to talk to. My personal
experience was once I started asking questions and he understood that I had
had done some research I had no difficulty in talking with him. For me his
experience spoke for itself. Again, I would trust him with a family
members life. Kathy Goertzen (Komo 4)went to Dr Mangham for a different
type of tumor (meningioma) . With all of the research available to her. I
think it spoke volumes when she chose Dr. Mangham.
Dr Douglas Backous of Virgina Mason Medical Center. next to Mangham i think
this doctor is in second place for experience in the treatment of AN's for
the Seattle area .
This is a starting place . There are other doctor's who are probably good,
but I strongly believe in the experience factor. "
Keep making music.......
Ciao,
Dana
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Robert, no worries, I can tell you from experience that it's nice to have someone nearby who has been through what you're going to go through...no matter what your choice is. And a place like this as well, because there always seems to be the inevitable "is this supposed to be happening" that will go through your head. There's good folks down in the SF area too. Dana is right about Raydean in this neck of the woods, she's got the info on all kinds of things, not just AN. One daughter has MS, one has Chiari and possibly Lupus, so she's well informed on the brain.
Keep us updated on what path you're headed on!
Kathleen
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Hi, Robert:
Just wanted to welcome you to the site/forum.
You're in a tough spot (career in danger) but the good news is that you probably have a fair chance of retaining a good part of your hearing with radiation treatment. You seem to be on the right track and have received much good advice that I can't improve on except to state that, if preserving your hearing is paramount (and for you, it is) then the sooner you address your AN (likely, with radiation, due to it's small size) the better. Don't rush into anything and don't get desperate, but don't waste any time, either.
I wish you all the best. :)
Jim
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Thanks again, everyone!
I heard back from Dr. Mangham at Seattle Ear today, as well as getting an email from Dr. Chang at Stanford this evening (it's true... the guy does check his email outside office hours!). I will be sending copies of my MRI and 2 audiograms tomorrow. I've got another appointment with my ENT here in Spokane on the 21st, but as I told the scheduler "I expect to pretty much have my mind made up by then".
I don't feel frantic, yet I agree with you Jim, that time is important in terms of dealing with this before more hearing slips away. You guys have all been an incredible source of information and inspiration, and it's truly appreciated!
Bye for now...
- robert
"making records is like making sausages... you enjoy them more if you don't see what goes into them" - Bono
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I don't work in the sound recording industry but have a collection of well over 1300 CD's and absolutely love the sound of music. I've always thought of myself as an audiophile and very descriminating (can't spell anymore however) when it comes to reviewing Cd's and the equipment to produce the sound. I've spent oodles of money on my home theatre and car so that I could enjoy the wonderful sound of music. THen along comes my tinitus. Then the MRI telling me I've got an AN. Then my previously great hearing starts dropping in my left ear to the point that I've lost from approx 1ooohz to 4000hz. but is just fine on either side of that range. hmmmm vocal descrimation? lets just say i can't use a phone with that ear anymore.
Then I went for GK because I didnt want to lose what was left of my hearing. I'm 2 years out and just had my MRI. Lets just say having Murphy for a last name has once again played a part in my case. TUmour is growing again and when I went for my lastest hearing test it drops before 1000hz now and stays there right across the frequency range.now my ability for vocal descrimation less than 62% and I'm a very good guesser.
I lose my enjoyment of your work and you may find it getting harder to do your work. On the plus side I still take care of the sound at our meetings and at large assemblies where upwards of 4000 people attend and am able to "hear" whats going on with the sound better than some less trained people with two ears can.
Hope you do well with what ever treatment you choose and send me some new music to enjoy. ;D
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Tone contol and shadow,
I thought this article might intererst you both...
http://www.hear-it.org/page.dsp?page=3852
cheers,
4
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Thanks for the thoughts, Shadow and 4.
I appreciate the link you sent, 4. I keep telling myself there might still be other options in the industry if I find that I can no longer continue engineering.
I can sympathize with your situation, Shadow. I too keep telling myself that knowledge and experience should hopefully help offset what I may be starting to lose physically. I've thought about setting up a compensating EQ network to use with headphones when I mix, but I don't want to aggravate my condition by having to increase the volume in my right ear.
I think a better idea is to spend some time "calibrating" my ears with tones and pink noise before a session, so my brain can hopefully do some compensation. I believe that is starting to happen already for me, and I am fortunate that no clients have noticed anything (including those that I've told about my condition).
On the shameless self-promotion front, you can check out a few of the projects I've worked on at my MySpace page:
myspace.com/tonecontrolaudio (http://myspace.com/tonecontrolaudio)
Best wishes to you both..
-robert
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Just found this thread and wanted to send ye a heaty AAAAARRRRR to ToneControl over on the Western Coast and I hope you'll keep us updated on your decision. Ain't it weird that the medical profession hasn't all gotten together on this one yet? Leave it up to us civilians to make such an important decision. It just stinks.
Best of luck!
(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate_dancing_to_music_md_clr.gif)
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Just spotted thi.
I had missle fossa and am vbirtually deaf in that ear. rthere are no guarantees re preservation of hearing with any procedure. Also, my AN has grown back.
My advice would be to watch and wait until you notice hearing changes, then straight into radiation treatment. That seems to have the better outcomes. Your profession requires hearing so you should also look into devices like Baha and trans ear that can help you with hearing loss followi9ng whatever treatment you need.
cheers
laz