ANA Discussion Forum
General Category => AN Issues => Topic started by: MattT on July 09, 2009, 11:20:38 am
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Hello all,
Well, about a week and a half ago I made the probably familiar journey from primary care physician("i have a ringing in my ear") to the ENT guy("don't see anything but your left side hearing is not so good") to the radiologist for the old MRI. Back to the ENT and I get the news that sure enough, it's an AN. Of course I have the same reaction that I've been reading about here in these forums. Shock, depression, indecision. I've talked to one surgeon in Seattle and have appointments with two other surgeons on Portland, OR next week. I'm 40 years old. Married with two kids. I've got so much information from the internet and have managed to scare myself by watching youtube videos, feel like my head is about to explode. Two day ago i was sure I radiosurgery was the way to go. Yesterday it's back to microsurgery. Apparently my tumor is 16mm x 9mm so the first surgeon seemed to suggest the suboccipital approach to try and salvage my hearing. He said that increased risk to the facial nerve by a few percentage points. Do I sacrifice hearing chances and go translab in order to better my chances /w facial nerve, etc?....Arghhh. So many decisions...
Anyway, wanted to introduce myself and say that I was so relieved to find this outlet for people in the same boat as I now find myself.
-Matt
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Matt .....
So sorry you have an AN, but so glad you found this Forum. You will find loads of support by caring people here!!
As you have probably already read on this site, the decision-making phase of this journey is for many of us the most difficult part. It sounds like you are already well into the research stage ..... try to stay away from the scary videos/pictures ..... they only heighten your apprehension. Each of our bodies/brains are unique so other experiences are only just that ..... they do not tell you what things will be like for you.
You are wise to get multiple opinions on treatment options. At your size AN you should have several treatment options, depending upon its exact location and your symptoms. Try to find the most qualified and experienced medical professionals you can ...... this is one surgery in which you definitely want the best there is.
Others will post here, as well but welcome to the world of ANers!!
Clarice
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Welcome Matt, but i wish you weren't here. I wish none of us was, but that being said, these are the best people around and you will get good infor, go advice, and good support here.
I can only give you advice from my experience but think twice before doing anything to sacrifice the facial nerve. (remember this is just one opinion) I had translab and still had to have my facial nerve cut because of the location of the tumor. Sure I miss the hearing but I miss the facial movement TONS more. It affects your ability to show emotion, chew normally, and although not painful it's not a good feeling. (feels like you are wearing a very heavy mask on half your face ALL the time) I don't look as bad as some but my eye brow on the surgery side is lower than the other side, and I have some breathing problems caused by it too. Just something to think about, like you don't already have enough. But you should also know this. Life does go on and it's GREAT! There's really not much I can't do just as well as I used to, with some effort. Hang in there and keep posting. This site was a life savor for me.
Julie
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Hi Matt and WELCOME!
Please feel free to ask ANY question here - we are here for YOU (& your family). I have a very strong faith & I feel that that "GUT" feeling is really nudging from above, but when it is right - procedure/doctor - you will know. It is imperative to do your homework and find out everything you can before you go to the different doctors, but I think once it happens, you will just "know"...just my 2 cents! Please feel free to contact me if I can be of any help or answer questions for you (or your wife)!
K ;D
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Matt,
I just had surgery last week but I can relate to how difficult the decision making is, this place is a great resource. Take a breath and know you can wait a little time to figure out your best course of action. It can be very scary but in this day and age, things are going to be OK! If I can be of help please feel free to contact me.
Take care,
Darlene
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Hi, Matt ~
Doctors often tell AN patients that if they happen to have the misfortune to develop a brain tumor, an acoustic neuroma is the one to have (because its benign and treatable). Well, let me add that if you have an acoustic neuroma diagnosis, this website and these forums are the place to go. We aren't doctors and we cannot dispense actual medical advice but collectively, our almost 4,000 members have a ton of real-world practical advice to offer. Ultimately, the form of treatment, doctors and facility you chose will be up to you, of course. I usually tell newly-diagnosed AN patients (affectionately known as 'newbies') that; not only do you want a doctor with lots of AN removal (or irradiation) experience but you have to feel completely confident with whatever treatment decision you make. I also mention that you'll have to live with any possible negative consequences , not the doctor, so don't allow yourself to be bullied, rushed or talked into a treatment you're not completely comfortable with. Finally, as much as we all want guarantees of a successful surgery (or radiation) with no or negligible side-effects, that simply isn't humanly possible for anyone, doctor or otherwise, to guarantee. As life is a risk, so is AN treatment, be it non-invasive irradiation, microsurgery or even endoscopic surgery (the newest phase in AN surgery). Once you accept that reality, it gets a bit easier to come to a treatment decision.
I urge you to continue your research and remain calm. Not watching AN surgery videos might you help achieve that state. :) Don't 'overload' on AN information all at once. You have a relatively small tumor and can spare some time. Use it wisely. Consider these forums as a resource and the members, including me, as friends with a common bond. We'll help and support you in any way possible, Matt. Feel free to ask anything and you'll usually receive an answer. This is a very active site with busy forums. It won't take days and multiple checks to receive an answer to your question, whatever it may be. I look forward to seeing your posts and of course, wish you much success as you move forward.
Jim
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Hi Matt,
Welcome aboard. My only advice is to make sure you get balanced medical advice on all your options. Surgeons love to do surgery. Radio-oncologist love to use the big machines. Find the person that will tell you as much as they can about the available treatments and then follow your instinct to what is right for you. I realize that is easier said than done. My diagnosis and GK was about a month apart. But mine was at 2 cm and the advice was not to dilly dally too long. My doctor was Dr. Modha at Rebound here at SW Washington Medical Center in Vancouver, WA. They now have a cyberknife there. I had Gamma Knife at Providence, because the CK wasn't set up yet. CK is a little gentler on the system, I think. But it usually takes several treatments. Dr. Bader ran the operation at the Gamma Knife center. But there certainly are well qualified people in Seattle. Best of luck to you, Matt.
Sue in Vancouver, USA
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Not much to add, but wanted to say Welcome, Matt. (ha ha.. welcome mat...I made a joke and didn't even realize it.) :D
My only advice would be - Step away from Youtube Videos of AN Surgery! Those things can scare anyone!
Lori
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Matt,
Welcome to the forum. One advice my ENT gave me is that with surgery the tumor is removed and with radiation the tumor's growth is arrested but remains in ur head..one morning u will wake up and know in ur gut the right approach for you. I think deciding is the hardest part...
JO ;D
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Thank you all SO MUCH for the welcome and words of encouragement. I love the internet but it is easy to overload on information as well as finding all the worse case stories and youtube videos out there. My wife got really angry and made me walk away. I want to hear real stories of success as well as struggle and I think I've found the right place. I'm definitely going to lean on you all for support if you don't mind :)
Sue, I happen to live in Vancouver, WA too! Maybe I could pick your brain about Providence CK experience.
-Matt
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Matt, what you miss here also is those who may have surgery or radiation,here for a short time,take some time to recover and then it's out of here and back to their normal life. There may be some adjustments which one adapts to far easier than you think you might. There may be the loss of hearing on one side, there may be some balance issues which in time usually improve to only mininal problems. In some cases facial paralysis which frequently returns to close to normal or normal. Tumor location and surgeon experience is a big part of the long term effect. Everyone varies with this all and there are no perfect answers as to how it will go for you. Good luck in your own AN journey! We understand!
Cheryl R
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Hi Matt,
It sounds like you are right on schedule, according to what you have heard and by how you feel. It is information overload at first, but that info, taken in small, deliberate doses, is what will enable you to make informed decisions. Learn all you can. Send your MRI off to places you have never heard of. In the end, you will have to live with a decision, and you won't be happy unless you have turned over every stone. People here on the forum have lived this experience and will be able to share both their knowledge and their experiences with you. Rest assured, there are no dumb questions. Feel free to vent at any time. You are welcome to our little club. Your MRI already covered the cost of admission! :-\
Priscilla
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Hi, Matt T ;D
Glad to have you on board this "boat" with the rest of us.
We're here for just about anything you need - short of cash :D - so don't hesitate to ask us anything.
In my experience, ANs aren't as scary as I originally thought; hope you come to that conclusion too.
Best,
Jan
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Hi Matt:
You may want to write down a running list of questions for the docs you speak with. Regarding the suboccipital approach vs translab, ask the doc what his take is on post op headaches. I read AFTER my surgery that post op headaches occur more frequently for those who had the suboccipital approach. I had this approach also to try save my hearing - lost it anyway.
I agree with the others - DON"T look at those you tube videos - everyone's recovery is different. In time, you will know which approach is the best for your situation. All the best - one day at a time...
Cecile
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Hi Matt and welcome,
I'll echo that advice not to watch the YouTube surgeries. It's fine to look at afterwards, beforehand it only freaks you out. Whatever route you decide to go, listen to your gut. I think most folks here will agree that after gathering as much information as possible and seeing surgeons and raiation oncologists, their gut feeling told them what was right for them, I know it was how I finally made my decision. Like you, I ping-ponged back and forth between radiosurgery and microsurgery. Two kids, now 13 and almost 15. Feel free to ask any and all quesitons, vent, laugh cry, join in some of the zaniness that goes on here. You will know when you're ready to make a decision. In the meantime stay away from YouTube!!! You'll get your best advice (apart from your docs anyway) support and information here.
Best wishes,
Wendy
Wendy
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Welcome Matt!
Chiming in to say hi and we're here to answer questions, bounce ideas off, etc....
My tumor was big and the location was so that 2 docs both agreed with the same approach. (Trans-lab. No headaches)
So I was spared that agonizing part.
I live near Seattle. Another WA AN!
Wishing you peace as you figure out the maze of info.
Things will be ok.. once you get over the shock of the dx and start really looking at all your options and finally make a decision, you'll feel tons better.
Maureen
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Hello Matt and welcome! I just want to echo the others in saying that making the decision is the hardest part but you'll know, just give yourself a little time and listen to your inner voice. I had microsurgery, translab, a little over 3 months ago. A lot of Drs will do phone/email consultations so make lots of contacts. You'll learn a lot in the coming weeks/months! You aren't alone and you'll find good support here, for both you and your wife. Best wishes as you begin your journey.
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Hi Matt,
First of all, welcome to our club one that all of us did not mean to join. Anyways, good luck on your journey, I'm 46 and have a small AN and am Watching and Waiting. Next MRI is in Feb of 2010.
Take Jim's advise and read as much as you can. You will also make many new friends.
Good luck, and best wishes,
LisaP ;D