ANA Discussion Forum
General Category => AN Issues => Topic started by: ChrisS on October 31, 2007, 07:29:09 am
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My mom was diagnosed with an Acoustic Neuroma and now I am doing a science research plan on it in my Senior year of high school. I was wondering if any of you would be willing to help me with my project.
Sincerely,
Chris Sharpe
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Spend time reading messages here.. and ask any question! .. is your mom on here too ?
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oh heck, i deleted this post as it wasn't the best of my moments... :(
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I'm sure anyone here would be happy to help you. There are some really knowledgeable people that I'm sure can answer any questions you have. What a great topic to do your project on. Hope it goes well and I really hope your Mom is doing well!
Lori
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Hey Chris! :)
Great project you are doing and your mom is so well loved out here! Yeppers, she's here and rather well-known amongst us ANA forum vets...... please give mom a huggle (as well as your grandmother!) and we are all here to help!
From what perspective are you doing your project?
Hope you are doing well! take good care of mom, ok? ;)
Phyl in Boston
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I know who now !!!! ;)
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I thought you needed a medical doctor to mentor your project???
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I thought you needed a medical doctor to mentor your project???
project may be via patient's perspective.... let's see what Chris says.
Phyl
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Sam he does and I have a form I'll be sending you shortly.
His originial project was denied by the school board so he's trying to figure out a new angle. They said there is a conflict with the Hippa laws which I am unclear about as he's not asking names just age and sex (male or female gutter minds). He's determined to make this happen and wants to focus on the cognitive affects and/or headache correlation. If I'm remembering correctly. This is his project and other them directing him here and hooking him up with Sam, I'm not involved. I'm sure he's open to suggestions.
So yes Joef, Mom is on here, has been since post surgery. This place has been my life line, my son has appreciated me finding this site and becoming involved and wants to do something to help further our cause. One of his friends in school actually was complaining to him about her symtpoms and he diagnosed her with an AN. She's had surgery and is doing great. I met her recently at a football game. She is having some cognitive issues with mixing up words but is doing well.
I appreciate everyone's help!
Hugs M
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Hi Chris:
Count me in!
Kathy
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Hi Chris,
Count me in too ;D
Hugs,
Aunt Cheryl
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Would be more than willing to participate.
Jan
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great project! so, when do we start? feels like school again... :) good for you Chris! sorry for my short reply at the start.
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Chris,
Count me in! Your Mom has been there for tooooooooooooo many people not to help out any way I can.
Group Hugs,
Brendalu
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Hi Chris, I'm in. I'm a nurse, so ask away. There is so much to learn here. What a great project. Your mother is lucky to have a son interested in a disease which effected his family. Good for him. Holly
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Hi Chris,
I'm also a nurse and I am willing to answer any questions. Good luck on your project.
Debbie
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Chris,
Great idea for a science project. Count me in.
Two ideas re HIPPA problem:
1 - I did a science project (WAY in the LAST CENTURY !!!)) that was just informational from literature; I'm wondering if you could do something like that?
2 - Perhaps one of the ANA Board members that's a (research) doctor (or, for example, a House doctor or...?) could 'oversee' your project and provide the proper forms and authentication required for you to do a health survey.... or maybe you could find out what kind of release form is required and have any of us participating in your survey send you a signed copy?
Dana
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Thanks for the suggestions Dana.
We are trying to work through the issue but the county person who has to approve the project is being a stickler. I found a think last night on Hippa laws and research but there was a lot of jargon and legalese to go with it so still wading through. I know he'll prevail it's just going to take some time.
thanks for everyone's support and yes, I feel blessed to have a child who wants to make a difference in what others will go through with this process.
M
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Chris,
I'd be glad to help if I can. I'm not on the site a lot because of the responsibilities of a new puppy, but your Mom has my email address. You can write to me there if you can't reach me here :o)
~Karen
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Hi, Chris:
We're not physicians but we're all AN patients or closely related to one and can offer lots of personal input for your project from a patient's point of view on the practical, everyday aspects of living with an acoustic neuroma tumor and/or recovering from surgery/radiation. Our anonymity is virtually guaranteed as we're all using 'screen names'. Even if we somehow inadvertently volunteered any personal identification, I know that you certainly wouldn't use it in your paper. I cannot believe that a competent adult cannot share personal experiences of a 'medical' nature to be used for a high school project, when they will remain basically anonymous. We're not giving out medical records here, simply sharing general information related to our AN experience. You can do this without mentioning specific doctors or hospitals, if that much secrecy is mandated by law.
In any case, if you can clear the obstacles, I'm sure many of us will be willing to help in whatever way we can, Chris. I will. :)
Jim
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Whatever happened to the first amendment? If we as individuals want to divulge personal information to ANYONE, it is our right. who in the world is imposing HIPPA on a high school student, for pete's sake!! Chris, you just ask me. I'll tell you anything you'd like, it is my right to give you my indormation. It's yours for the asking. Boy oh boy do we ever need a new president!! Holly
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HIPPA came from the democrats, this president had nothing to do with it!!!.
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HIPPA came from the democrats, this president had nothing to do with it!!!.
I never eluded to whom made this grave mistake, what I meant and mena is that this has to change and hopefully someone in the new government will recognize that this HIPPA regulation is simply ridiculous...and I happen to know that if you think HIPPA really protects your privacy, you are all crazy, because beleive me, it doesn't. It take up your time in the doctors offices but it really doesn't keep information priviledged. There is no way to actually do it. Does anyone recall the recent episode when George Clooney had a motorcycle accident and entered an ER in New York? The hospital staff took it upon themselves to divulge his personal information and then they got suspended. He said he didn't care and din't want the employees to be suspended but the hospital said that it was their policy and so got the suspension. Now, I believe that that was a legitimate reason and that HIPPA should be enforced but don't you all agree with that, that's an easy one to understand. But the rest of it is crazy making. That's my shpeel for the day. Thanks Sam for reminding me how HIPPA drive me NUTS, Holly