ANA Discussion Forum
General Category => AN Issues => Topic started by: dlbenz on March 23, 2008, 04:40:06 pm
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I'm 38 years old and I just found out this past week that I have an AN (BTW: this news comes exactly 1 week after I learned my wife is pregnant with our first child... talk about 2 huge weeks). My doctor says the AN is very small and has recommended I meet with a Gamma Knife Specialist. As of the writing of this post I still have full hearing in my ear, though I have had multiple episodes of sudden and substantial hearing loss in the ear (4 to be exact, spanning the past 4 years). My biggest symptom is vertigo which is pretty much non-stop. It is not debilitating; simply annoying, but definitely an issue. I also have recently begun having a ringing in the ear.
Obviously I would like to preserve the hearing in my ear AND get treatment ASAP. (Watch and Wait is NOT an option in my mind, especially given my constant vertigo). I make my living working as a TV Sportscaster and given that facial paralysis would impede my ability to make a living, but that I still have useful hearing in my ear, I'm torn as to what to do... and I am certainly, as my subject suggests, totally freaked out.
I've certainly never felt so mortal or had such an appreciation of how much we all take life and good health for granted.
As I'm just getting started on my AN journey I would appreciate hearing from those of you further along in your treatments with any recommendations on what treatment option you might pursue if you were in my shoes. Thank you for your time.
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dlbenz,
First of all take a deep breath. You will be okay. Secondly, congratulations on your impending fatherhood! This is an excellent place to hear about other people's AN journey and to get advice. The fact that your AN is small is good. It gives you plenty of time to research your options. There is no need to rush into anything. There are many people on here who have experience with Gamma Knife and I will let them share their advice with you.
Jean
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Hi Dlbenz
Welcome to the group as unfortunate as it has to be. You have a good group of people who will listen and offer advice.
I can offer some input being that I'm an actor and my appearance too is very critical to my ability to perform. I made the decision to have Translab surgery because most of my hearing was gone in the AN side and the surgeons were confident that at 1.5 cm, there would be little damage and I would recover in two months. During the surgery, they discovered that the AN had grown onto the Facial Muscle Nerve and it was stretched as they removed the tumor. Nothing as serious as some of the others on the board have encountered. I'm now nearing the end of four months post surgery and I still have facial palsy on the AN side of my face. I cannot go back to acting until it recovers. I'm just now seeing signs of movement but I am still months away from being able to get in front of a camera comfortably. This is something someone in your profession needs to consider. In retrospect, I wish I had investigated other options more carefully. I know others in this group have more advice on Gamma Knife surgery -- I can only give you a personal account of my experience with Translab.
I also know your concern about hearing loss, but there are a lot of corrective devices that can be used to compensate for hearing loss on one side. I've been an actor for 12 years and the hearingloss on one side hasn't really affected me. I know as a newscaster you are being fed information from several sources -- in both ears -- maybe there is a dual feed piece for one ear.
Good luck in your decision. By the way, it will help others who are giving advice to know what size the tumor is. It gives a better perspective on the options.
Best wishes
David
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By the way, congratulations on your first child! My beautiful 25 year old daughter just treated me to brunch today for Easter and my birthday. You will have these great things to look forward to.
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I don't know the exact size. I didn't even think to ask. My brother-in law is a surgeon has requested a copy of my MRI. I will ask him about the size.
The only thing I can say is my original doc said it was "very small" and showed me some diagrams saying, "Yours is even smaller than these pictures." Not exactly scientific measurements but that's all I have right now. I will contact my doctor tomorrow to ask him the size and then follow up here.
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Oh and thanks for the congrats on my fatherhood. It's nice to have something so wonderful happening at the same time of this AN issue.
And, thanks for the replies. I look forward to reading and learning more.
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Sorry to read your news, this isn't a journey any of us want to take but you will find fantastic support on here.
Congratulations on your lovely news of impending fatherhood :)
You are lucky you have found yours while it is still very small and before you have any major symptoms which should mean you can get it treated and save your hearing before it deteriorates and before you have any other issues crop up. This is a BIG positive.
It can be hard to see any positives I know but you are in a fortunate position (honest!). Agree with Jeanlea, take a deep breath and give yourself a bit of time to let everything sink in...
Where abouts in the world are you?
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I am in the Washington, DC area. I am told there are some great hospitals/doctors in this area, though I'm just beginning my research.
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Hi Dlbenz,
Here is a quick run through on your radiation option as I see it.
I'm pretty sure "very small" means the AN is in the canal, and below 1.5 cm. That would make radiation a reasonable choice. Some might quibble about you still being young, but these days there are many people under 40 getting radiation treatment. Radiation treatment for ANs is very focused (they like to call radiosurgery), and other tissue do not get much exposure. It also has the best chance of preserving hearing.
The question mark will be the vertigo. For many radiation patients, the balance nerve is either working well enough, or has lost most of its function and causes no real problems. In some cases, though, it can get stuck working half-way, causing serious vertigo problems, in which case surgery is a better treatment. Since you describe it as annoying vertigo, not debilitating, it is probably not in that category. I would suggest you see if you can get vestibular lab testing, which will measure how well your balance nerves are working.
Although watch and wait remains possible, Its sounds like you are like me, and many others: once symptoms start showing up and developing further, it is time to do some research and planning, and then take action.
Best wishes, Dad (start getting used to it!)
Steve
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As previously suggested, take some deep breaths and consider how wonderful it will be to be a father! This AN thing sucks, but it could be SO much worse!
You're in a great part of the country - I beleive you will find some great docs in the DC area. And, you are also close enough to NYC to look into options here. You may want to conslut with Dr. Golfinos and NYU - he does neursurgery on AN's (doing mine in approx 3 1/2 weeks!) and is also the head of the GK unit at NYU Med.
From everything I've learned in my own AN journey, I would think that you'd a candidate for GK or CK. Lots of folks on this forum have had both and can share their experiences.
First thing I'd suggest is that you get a copy of your MRI on a CD (get several copies). Also go to the CK forum ( http://www.cyberknifesupport.org/forum/ ) and post some questions. There are sugeons there who will respond to queries, so it might be a great source for you.
I know that this is terrifying, overwhelming, brain-bogling - but you'll get lots of support from this forum and lots of info on the web. Take it one step at a time. And - BREATHE!
Deb in NJ - translab s(AKA "boogerectomy" ) scheduled for 4/16
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FYI: I had a full range of balance testing when I first went in for this issue and passed with flying colors, so, as I mentioned, the vertigo is much more annoyance than anything else, but it definitely gets old.
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Hello & Welcome~
Even though you have had some bad news that made you seek out this site, it is a good one and the people here are informative and supportive! CONGRATUATIONS! In my opionion, there is NOTHING in the world better than being a parent!!
If a can be of any assistance to you (or your wife) in dealing with all of this, please feel free to send me an PM. Also, you can check out my blog to see what life is like AFTER (12 years) AN surgery!! (The address is below!)
I wish you peace while trying to figure out which road to take,
K
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I can offer some advice regarding the ringing in the ears - based on my own experience. I have hearing aids for both ears, and, when they are working without any problems :), the ringing actually goes away - even when I take them out. If I take the weekend off (from wearing them), the ringing will come back - after a few days.
Sound is noticably different in my left (AN) ear, than in my right. When I listen through a telephone - through my left ear - it sounds like someone is talking in the bottom of a tin can. And, it's not very legible. I was diagnosed as having nerve damage in both ears, but I am dependent on my right ear, as I hear more clearly through this ear. When I advised my last audiologist of my first experience with hearing loss - I was a passenger in a car, stopped at the stop sign, when someone (standing on the street corner) threw a stick of dynamite right on my lap). I panicked, and brushed the fizzy little thing (at the time I had no idea what it was, as it all happended so fast) right off my lap and onto the driver's lap (again, I panicked and knew I didn't even have time to think), just as the driver brushed it back off, right back onto my lap, and, at this point, I was able to think, so I brushed it off right onto the floor of the car, when all of a sudden, BOOOOM!! The entire car was completely engulfed in smoke, and I couldn't hear a damn thing - for hours. This happened in my late teens, as I am now 40 years old. My hearing came back several hours later. I don't recall have a daily problem (with hearing) in the years following that experience. I do; however, believe that incident caused my nerve damage in both ears. It was about six years ago that I found myself continually asking people 'what?', or 'huh?' on a daily basis. I believe the nerve damage slowly progressed over the years. And, I believe it bothered me (asking others to repeat) more than it did them (to repeat).
Hopefully you're reading this to the end, as I'm now finished beating around the bush ;) and would like to advise you of an excellent recommendation I just received from my last audiologist - refrain from wearing the hearing aid in the left ear, and get the right ear turned up higher. Although the hearing aids have helped, I still cannot comprehend some words - when other's can. Since I always spoke on the telephone with my left ear, it seemed hard to 'think' when I began using my right ear. This only lasted several weeks - as I can't imagine going back to the left.
Hope this helps.
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Dlbenz,
I was treated at Georgetown with Cyberknife last summer. Might want to check out their website or feel free to contact me if you want a recent patient's perspective.
Best of luck,
JB
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dlBenz -
hi and welcome. Also congratulations! As Kaybo said, there is nothing better than being a parent.
As far as the AN goes, you could certainly watch & wait, but as you say, it's probably a good idea to deal with it sooner rather than later, especially with the profession you are in. The larger the AN becomes, the bigger the potential for more symptoms. You also run the risk of having more side-effects when you do decide on a treatment - be it surgery or radiation.
If you haven't already done so, I suggest you contact the ANA and ask them to send you some informational brochures. They explain a lot about ANs and your treatment options.
Best of luck,
Jan
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Just spoke with my doctor. My AN is 1.2cm at its largest diameter. He says this is considered small. Is it? Does anyone out there have a history with a similar size?
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Hi dl and welcome.. and congrats on the "new addition" news! What lovely news! :)
Yes, 1.2cm is deemed small-ish en route to medium.... mine was 1cm at time of treatment, so not far off from your's (please know that head MRI's have a margin of error in tumor sizing of +/- 2mm...so, your's could be anywhere between 1cm and 1.4cm....)
Again, welcome... hoping you find answers here that you seek. I know you already have the support of many :)
Phyl
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Hi dl and welcome! I don't have much to offer as far as info on radiation, since I had translab, but wanted to say congrats to you and your wife! At least you got some wonderful news mixed in with the bad.
Sounds like you have lots of time to do some research and it helps to have a doctor in the family to help make sense of some of this stuff. Good luck to you and keep us posted.
How 'bout them Yankees??? ;D
Lori
p.s. Happy Birthday to LADavid!! Hope you had a good one (or have a good one... ???)
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By the way, congratulations on your first child! My beautiful 25 year old daughter just treated me to brunch today for Easter and my birthday. You will have these great things to look forward to.
Happy Birthday! Aren't daughters wonderful!
Brenda
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Hi, dlbenz:
I'm sorry that you have an acoustic neuroma but glad you discovered this great website and decided to post on the forum. I think you'll find it invaluable for practical information as well as a good place to vent (we all have those days) and/or stay connected with folks from all walks of life, from all over, including Europe, Australia and elsewhere who can empathize with your situation.
I'm a retired radio broadcaster. My AN was discovered just a year after I left the business, so it wasn't a factor. I'm deaf in one ear but it was a very gradual loss . I attributed my loss of hearing to listening through (usually loud) headphones for hours a day for 25 years. I did wonder why only one ear was affected but shrugged it off until other symptoms manifested themself (imbalance, intermittent stabbing pain on the 'AN side', loss of my sense of taste). When I finally saw a my primary care physician, he thought my taste loss was possibly a thyroid condition. Tests ruled that out so he cut to the chase and ordered an MRI. The scan showed a 4.5cm AN. I quickly located a great neurosurgeon and had debulking surgery less than a month later. Three months after that, I underwent FSR (26 treatments) which were successful, as my signature (in italics, at the bottom of this post) shows. Radiation is very sophisticated these days. My radiologist said that I might lose some hair where the beams were concentrated. Then he said he had re-adjusted the dose and I wouldn't lose any hair. I didn't...and had no problems with the radiation, either, unless you count boredom. My hearing is still absent in one ear and I doubt it will be coming back. However, my neurosurgeon still checks it during my semi-annual visits, which is encouraging,as the nerve wasn't cut. Still, I've fully adjusted to SSD (Singe Sided Deafness) and it isn't a major impediment to my lifestyle, just a minor annoyance, at most. Its amazing how we can adjust to physical changes that we can't control.
I'm not a physician but you sound like you'll be a good candidate for radiation (Gamma Knife?). If so, you probably already know that it's non-invasive and quite successful in stopping and eventually killing acoustic neuromas. Some level of hearing is often preserved, although that can not be guaranteed. You'll need to gather more information and consult with doctors/radiologists and so on. It's tedious but necessary. Fortunately, AN's tend to grow very s-l-o-w-l-y, so there's no rush, except for your own sense of urgency in dealing with this pesky tumor. We may be able to help. As someone who had a successful outcome to surgery and radiation I advise you to choose your surgeon/radiologist very carefully. There should be some very good doctors, familiar with acoustic neuromas, in your area. As another poster noted, you can always have the radiation performed in Manhattan, if necessary. It probably won't be necessary but a nice option to have, all the same.
I wish you the best and hope you'll stay connected to this site snd forum. :)
Jim
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LADavid -
adding to the birthday wishes ;D
Jan
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HI,
Sorry to hear about your AN. I am the parent of an 18 year old with a VERY VERY LARGE AN. (Read profile) ANd of course your predicament doesn't sound as bad as our situation. You do have some time to decide what to do. I would say that when you do your research, find out what other doctors say about the physician you pick. It is EXTREMELY IMPORTANT to find a hospital and doctors that specialize in this treatment. The other good news is that because your tumor is small you have a very good chance of saving your facial nerve. I have heard upwards of 98% when you go with doctors that have done many hundreds of the procedures. I would ask your ENT what doctor they think is the best. Ask who they would go with if they had an AN. I found that to be the best way to guage a doctor. I don't know alot about GK but I am sure it is easier than surgery. But if you do have surgery with a good facility and doctors your prognosis is probably very good. Good luck. The hardest part is the research. This site is fantastic for that. There are many great people on here that know what they are talking about.
Sending Sunshine.
Robyn