ANA Discussion Forum
Archive => Archives => Topic started by: JHager on October 25, 2005, 10:38:43 pm
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Hey, everyone!
My wife ran across this rather neat website: www.carepages.com (http://www.carepages.com). It allows you to set up a site where you can post your updates, etc. so that others can check up on you. I have a bunch of students (197), and many of them keep asking where the hospital is and what room I'll be in after surgery. Because I don't want a mob scene, my wife's going to keep the carepages site updated until I'm home and feel up to it myself. Pretty neat thing, I think.
(Actually, my brother and sister-in-law did the same thing for both my nieces - you could go the website and check out pics of the girls right after they were born. Much cuter than I'll ever be, that's for sure. I was more like the Pro-Birth Control Calendar Child of 1971.)
Anyway, my patient name is 'JoshHager'. Very original, I know. Check it out if you'd like. I'll post here as soon as I'm able, but this will at least keep the wait time down. I don't know about you, but waiting for Jeanlea, Jake, and Linda was nerve wracking!
Happy (almost) Halloween!
(John, for you and your fellow Canadians: Halloween is this bizarre American holiday in which we dress up our children and cause them to extort candy from friends, family, neighbors, and complete strangers. If the children are still relatively young, like mine, you can dress them up cute and people will just LOVE to be extorted for lots of candy. Then, because they're young, you can pick the best pieces for yourself, leaving the stale marshmallow peeps and loose candy corns for the kids. ;) )
Josh
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hey josh..when are you scheduled?
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Hey Kristin (again ;D ),
I'm having translab November 7. The countdown begins!
I'm getting nervous, but not overly so. I've already lost hearing and balance in my right ear, so I hopefully won't struggle with vertigo or dizziness. However, I have a large, 3+ cm, tumor, so the docs are concerned about the facial nerve. I'm fond of my face, average as it may be, so that's got me worried. Fortunately, I have a good neurosurgeon, who believes in leaving a little tumor if it means saving the facial nerve, then monitoring it and zapping it with GK or FSR if it grows. Good option, I think.
Thanks!
Josh
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kinda crazy huh? i remember thinking....i'm having BRAIN SURGERY in one week. ahhhhhh. i still think that in retrospect every once in awhile...i had BRAIN SURGERY? whoa!
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Josh,
I think the care pages are a good idea. I had my husband email family and friends from school to keep them up-dated on my progress and it was spread from there.
I'll be thinking of you on the day of your surgery. Hope it's as uneventful as brain surgery can be and that you will be back in your classroom as quickly as you would like to be.
Jean
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Josh,
I checked out care pages and got an id. I'll keep track of you from the GWN! There's no picture of you, though. What do you look like? 8)
We do have Halloween here, too. It really is a strange thing. You spend all year telling your kids not to talk to strangers and not to take candy from strangers. HOWEVER, on this one night you can dress up so that nobody recognizes you and then go door to door to strangers houses ASKING for candy. What a wierd message we send to our kids (and our parents sent to us, and their parents sent to them...).
So, on that note, I'm anxiously awaiting a photo of you to be uploaded! <tapping foot> ::)
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John,
I'm thinking of waiting 'til after surgery to upload a picture. Post surgery, people will by more sympathetic! ;D
Josh
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i'm beginning to get josh and john and jake all mixed up!!
ok...josh is in vegas and having surgery in a week? john is our neighbo(u)r to the north, pending MRI? and jake just had surgery? am i right?!
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Hey, Kristin!
Ok, lemme see if I have it straight! ::)
Josh is a compulsive gambler living in Las Vegas under the 'guise of a school teacher. He claims to have an AN, but is really submitting himself for organ harvesting in order to pay off his gambling debts. When he speaks of a 4 cm AN, he really means a 4 digit debt. I think we could probably gather enough money from everyone here to cover 4 digits, though. I think Josh was on an episode of CSI Vegas a while back.
Jake just had surgery, yes. However, he neither lives in Las Vegas, nor is a compulsive gambler. I believe he lives in Boston (since his handle is BostonJake), but I'm not sure. Perhaps if we ask him to say apartment and car? (Apahhtment, cah) His surgery was last week. He also has a friend Linda, who had surgery on the same day. I don't think they're related, however. I don't think they've ever met, either. She's not from Boston, but has eaten at Boston Pizza before. I think they met through an AN forum and decided to get operated on the same day. If I'm not mistaken, House gives group discounts? Perhaps if we had enough people we could get a bus load together and go there all at once? Maybe Josh's idea of a group get together is right on track, but for surgery, not for afterwards.
Me, I'm your neighbour to the North, fresh from the MRI oven on Monday, waiting for the verdict. The jury is still out deciding my sentence. The one thing that I've learned is that ANs, like our currency, are 73% smaller in Canada. Perhaps it's all the cold weather?
Not to further confuse you, but targa72e is also called John. He has been lurking on this forum for a while and just surfaced and introduced himself. He has been diagnosed but has not undergone treatment yet. Sounds like a nice guy.
There you have it. For some reason, people always seem to be able to keep me straight.
"She was lookin' kind of dumb with her finger and her thumb in the shape of an L on her forehead...."
If it's easier, you could call me by another name. My wife has a few for me. Like honey and sweety. What were you thinking? :P
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Hey Kristin,
Pay no attention to that man behind the great, white curtain to our North - I am Oz, the great and powerful.
He's got it all wrong - I do live in Vegas, but I'm completely over the gambling problem. Really. Don't believe me? Want to bet?
Also, I'm still researching the travel thing. If you could all just forward me a little info, like name, address, social security, and pin #, I'm sure I can find some good deals. ;D
Talk to everybody soon!
Josh
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ha! i'll get right on it! :)
no, really...i was wondering how that will all play out....the whole vegas thing. i really think it would be a blast! now if i can get someone to go w/ me, cause there's NO WAY i'm going to vegas by myself...what if ya'll no-show? i'd be stuck in vegas alone...sad sad story!
kristin
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, I have a large, 3+ cm, tumor, so the docs are concerned about the facial nerve. I'm fond of my face, average as it may be, so that's got me worried. Fortunately, I have a good neurosurgeon, who believes in leaving a little tumor if it means saving the facial nerve, then monitoring it and zapping it with GK or FSR if it grows. Good option, I think.
Josh:
Refresh my memory, are you having surgery at House? I ask because I'm wondering whether they will leave some of the turmor to preserve the facial nerve and then recommend radiation.
Also a teacher/counselor, retired between first ENT visit and diagnostic MRI. Had gone back to classroom after 20 years as counselor and couldn't believe the classroom noise level had risen so much that it was distracting. The AN diagnosis gave me a reason to believe I processed the noise differently after developing an AN.
Jeanne
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Hi Jeanne,
No, I'm glad to be staying home for surgery - it's at Sunrise Hospital here in Las Vegas. I'm on my last week countdown!
House just wasn't an option for me: out-of-network insurance, travel, two kids (4 & 6) in LA for two weeks with only my wife to entertain them and help a recovering husband. Plus, I'll feel better at home once I'm out of the hospital.
My surgeon has done a few hundred of AN's, so I'm comfortable with his experience level.
I've had pretty severe hearing loss for several years - longer than I've been in the classroom, actually, so I'm 'preadjusted' to the noise level, I guess you'd say. I have good students, so that makes it easier.
Thanks for asking!
Josh
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john...a few hundred AN's in how many years? have you talked to any other patients that have had their AN surgeries done by these docs? what were their results? you're having translab, correct? so hearing loss really isn't an issue, but what about facial paralysis? will they have a facial nerve monitor during surgery? i'm sorry...but this scares me. i know it's your brain and not mine, but reading what you wrote made me uneasy.
gotta make sure you're getting the best care, ya know...don't want to screw up our vegas trip! ;)
kristin
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Hey Kristin,
Thanks for checking in! I forget that I've posted all over this site - so my more detailed explanations are buried somewhere.
My neurosurgeon trained at Barrow in Phoenix, the neurotologist at House. I will have an electrophysiologist to monitor the facial nerve, and my docs take what I think is a great approach to facial nerve preservation. (Which is truly my biggest concern.) Rather than take a 'get the whole tumor at any cost' approach, they have sometime left a little of the tumor if it is too tightly wrapped up in/stuck to the facial nerve. That way, they don't have to sever the nerve. If they do use that approach, they'll monitor the tumor with MRI to see if it grows. If it does, they'll zap it with Gamma or FSR as it will be much smaller.
I've reviewed cases with them regarding this, and like their numbers, their frankness, and their experience. Both recommended I get a second opinion, which I find rare. And, to have a surgeon consider radiosurgery is pretty rare, too.
So, I feel good about it - an informed good. A lot of folks seem to get railroaded in one direction, or come away from their initial meetings feeling worse about their treatment options because of their experience with the surgeon. I feel fortunate!
The one-week countdown is on!
Thanks again for asking.
Josh
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Josh: I've got news for you, up here in the get white north we also celebrate Halloween, very much the same way you do but we have to put snowsuits under the kids costumes and send them out in snow shoes! Kathleen
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Very true, Kathleen.
I have to remember to get out tomorrow before the sun sets at 3 pm and shovel the driveway, so that the kids can get to the house. It's not everywhere you can give the kids ice cream cones for Halloween and put them in their treat bag (mine use Buffalo skins) and when they get back home, they're still frozen! Say, have you tried out those new Nike Air Snowshoes? Pretty cool!
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I used www.supportcircle.com for my care page, and it was FANTASTIC! It allowed me to describe what happened (so I didn't have to repeat my story a million times), and suggest ways people could help me. Once I set it up, I gave all my friends and family a link to it, and then gave webauthorship over to a friend of mine who posted daily status updates post-operatively, and put photos of me out there, too. SupportCircle.com also allows people to post messages to you, and you can post thank-you's to all your helpers. All my friends and family across the world absolutely loved having this central location at their fingertips, and I appreciated it because my phone wasn't ringing off the hook, and I could read all the wonderful well wishes from everyone whenever I wanted. I HIGHLY recommend that you utilize a web site like this!!!