ANA Discussion Forum
General Category => AN Issues => Topic started by: loose screws (tightened) on September 23, 2009, 10:11:53 pm
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As I'm sure nobody would. Any how I just found out I have a tumor in my head. Wow that's something you never expect to hear. Well I've been spending all my free time on the net trying to find out every bit of information I can and this looks like a good place to get what I'm looking for. Real people real experiences, cool. I don't know where to look first on this forum. I guess the pre-treatment options?
I feel like I've been hit in the face so hard I can't think straight.
Well, I'm glad for this forum.
Mike
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Hi Mike. I'm sorry to have to say, welcome. There are some very cool people on this site. I have not had surgery yet, but have been researching like a foolish demon since April. I've made some boa boas along the way. You have a relatively small AN in the AN world. This is good. Despite what you think. I know what I thought when I first saw mine, so I know what you're feeling. Well sort of...
Read. Absorb. Read some more. Talk to lots of docs. House is a very very good start.
I wish you peace.
Nikki
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Thanks Nikki. I have a feeleing I'm going to be on this forum everyday for a while. It's nice to know there are others out there with our problem. Have you gone back and forth on what type of surgery to go with?
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Welcome to the forum, Mike. You have done the right thing to start your own topic here, you will get more responses tomorrow. Ask as many questions as you like, there is always someone willing to answer. Going back and forth on what treatment to have is pretty standard. Just work through it, at some point you will know what you are going to do.
Steve
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Steve, thanks for your words and guidance. With the willingness to help around here I'm sure i'll get this figured out eventually.
Mike
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Welcome Mike.
DHM :)
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Hi, Mike and welcome.
You mention types of surgery, but with an acoustic neuroma your size you might want to consider radiation. Treatment is a personal choice, as you'll soon see, but you want to investigate all your options. To that end, somewhere in your decisionmaking process you should consult with a doctor who does radiation so you get both sides of the picture.
Being diagnosed with an AN is very frightening and overwhelming. A good place to start, in addition to the Forum, is the ANA. If you contact them, they will send you their informational brochures which many find to be very valuable. They are written in plain, easy to understand language for all those non-medical personnel among us ;D
Good luck on your AN journey, and please do not hesitate to ask us anything. That's what we're here for - and we'll be glad to help in any way we can.
Best,
Jan
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Hey, Mike.
I know what you mean about being slapped in the face. You are not alone, I promise. Deep breaths and one day at a time. The best thing you can do for yourself is explore all your options, get educated by researching and asking questions and don't isolate yourself.
~Nancy~
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Thanks DHM. And Jan, It's funny you said I mentioned types of surgery and assumed I was not considering radiation treatment when I wrote that reply to Nikki. At the time I wrote that, I was swinging towards the surgery decision and away from the radiation that I once
favored. Everything is still so new I don't have any idea what my final decision will be. I have an appointment at the house and from what I can figure they are pro surgery. So I'll give them a listen and hear what they have to say. In the meantime 'll take your advice and
contact the ANA for their brochures. Do you know of any places around So Cal that do radiation therapy that I could contact to get educated on that approach?
Thanks Jan
--Mike
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Hi Mike
Just wanted to say "welcome" and to wish you the best of luck making your treatment decisions. As has already been said before....research, as questions, take your time. After you start having consultations you will figure out what is best for you and who you want to have treat you. I was lucky in some ways in that surgery was my only option for treatment but I did go thru several surgeons before I found the one that I knew would be my surgeon. I saw that you were waiting to talk to House and as I am sure you know by now they are super expirenced in treating AN's and that is what you want: expirence with AN treatment. Take Care Mike!
Erin
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Mike,
Sorry you are here, but welcome to this exclusive group. You have found an excellent place.
Don't forget this important fact - taking a day or two away from researching things is a good practice. I know I quickly got to a point of "too much, too fast." Someone on the board made a suggestion that there is nothing wrong with just dropping things for a while. I did that one weekend... and suddenly there was clarity.
Best wishes,
Dennis
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Hi Mike! We all here know the feeling when you find out there is something in your head that don`t belong there. Iv`e had mine dionosed for over 2 years now and only god knows how long it was there before that. Mine acually sits larger .12X.06 than yours and so far hasn`t givin me much of a problem "stable". Just wanted to let you know you have time to figure out what to do. As for me I`m just going to W+W untill the need arises for it to be dealt with, hopefully never! All cases are individual and everyone is different in their choices. Just wanted you to feel reassured that progress has come a long way in this field for whatever you decide. Best Wishes! Mickey
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Welcome Mike.
We forumites are all familiar with the license plate of the truck that hit you. It takes a while to get your mind to wrap around the announcement of "You have a brain tumor." Read. read. read. and then give yourself time to process. The time will come when you know that you have made a decision you can live with. I went back and forth between radiation and surgery several times before I made my decision. Any questions or doubts that you may have will be addressed w/ compassion, wisdom, and humor here on the forum.
Priscilla
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We forumites are all familiar with the license plate of the truck that hit you.
:D :D :D
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Mike,
You can find out great info about Cyberknife (and other forms of radiation) at the CK Forum:
http://www.cyberknife.com/ForumLanding.aspx
I am a bit partial to the CK group at Stanford, since it is where I went. You could try an email directly:
http://med.stanford.edu/profiles/cancer/faculty/Steven_Chang/
Steve
PS: The plate reads: AN 4 U ;D
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Mike,
We're glad you joined this group. Lots of people in the wait and watch mode. Lots of good support, advice if you need it.
Once the shock wears off that you have this bugger near your brain, things will seem clearer. There is no rush in your decisions.
It's just dang inconvenient in your life I'm sure!
You have a small one so that is GOOD!
Maureen
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WoW, I'm overwhelmed by the responses. Thank you all for your words they are worth a lot at this time.
--Mike
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Hi Mike ~
I hope you can accept yet another welcome because I'm offering that - and an echo of the previous comments.
The initial AN diagnosis then learning about the array of available treatment options, their risks and rewards, can be daunting, I know. I suggest you take a few deep breaths and not push yourself to read everything available in a short time. Fortunately, your AN is relatively small and that gives you breathing room, as it were.
As you'll soon learn, both surgery and irradiation have their own, unique risks. You'll read accounts of AN patients with really challenging obstacles following surgery or radiation. You'll also read about AN patients who experienced very positive outcomes from either approach. Then, there are the anomalies, such as folks like me that underwent AN de-bulking surgery (partial tumor resection) then, FSR (targeted radiation in small does, spread out over weeks). I had an excellent outcome - almost no complications or resulting deficits. However, I have to caution you, as I caution all 'newbies' (newly diagnosed AN patients) that one person's experience, be it with surgery or radiation - or both - and their outcome, be it good or not-so-good, is not an accurate indicator that should you choose the same form of treatment, you'll have a similar outcome. This situation involves a level of risk. Nothing can be guaranteed. That's the hard part. The good part is that you can count on our membership for information and suggestions based on real-life experiences. We're eager to help and welcome the opportunity to respond as best we can to your questions. Consider this your 'AN home'.
Jim
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Hi Mike and welcome. Lots of great people on here and you are welcome to post your questions, thoughts, fears, frustrations and, heck, Holiday recipes if you want! I likened getting the news of an AN to those old Road Runner cartoons. You know...the coyote looks down the railroad track one way and nothing as far as the eye can see, and then he looks the other way, and ditto, nothing there. Then he steps out to cross the track and BAM, he's smashed up against the speeding train, eyes wide open in terror and hanging on for dear life. You can probably figure out the similarities!! LOL ;D At least I sure can. From the speeding train you are dumped onto the roller coaster and then you will have a series of ups and downs as things progress and finally, hugging the ground for some stability in an ever changing world, you will be set free to live the rest of your life, a little wobbly, but eventually the road will be familiar again and you can go about your business with some reminders of this unique experience and knowing that you can always come here for information, comfort, solace, support and yes, a few laughs. I've found that ANer's can have a wicked sense of humor!!
Anyway, best of luck to you in your future treatment and eventual recovery.
Sue in Vancouver, USA
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Hi Mike
I didn't want to join this group either - I just wanted to say hi from Australia and that there are members on the forum from all over. Good luck in your research. Signature below tells my story.
Kimbo :)
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Mike -
for radiation in CA, I was going to suggest Dr. Chang @ Stanford, but I see Steve beat me to it.
As you say, House can be pro-surgery, but that makes perfect sense since they are the pioneers of AN surgery.
Whenever you go, whatever decision you make we're here for you.
Best,
Jan
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Hi Mike,
Sorry I'm a little late in replying. I had been waiting for MRI results and was a little nervous and skipped a few days on the forum. I am glad you have found this forum and you will see as you get adjusted to the idea of the new you, you will find that you will be o.k. with it and you will deal with it. There is lots of reading here to do that will keep you very busy.
Vivian
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Hi Mike,
I have just joined the forum myself, and have found that there are a heap of wonderful suppotive people here with a great deal of knowledge.
All the best for the up coming journey.
Don