Replies to This Discussion

Permalink Reply by Kim P. on December 18, 2009 at 7:48am

Hi, I had the same thought a few months back. I thought it would be useful to the medical community as well as AVM patients. I would be willing to help in any way possible with the endeavor... data entry, form creation.... whatever needs to be done.

Kim

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ModeratorPermalink Reply by Gordon D on December 18, 2009 at 7:58am

Your welcome to my information

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Permalink Reply by Jamie Pantelis on December 18, 2009 at 8:05am

That is a great idea! I am an open book.

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ModeratorPermalink Reply by Ron, Kansas on December 18, 2009 at 10:06am

A database is only as good as the information that is in it. Since some (most, a lot, ???????) of AVMs are treated over a longer period of time, it might be helpful to have a "Date treatment Started" and "Date Treatment Ended" field. Maybe "If Embolizations, number of treatments".

For us, there were two lead DRs, one for Embolizations, one for microsurgery, or three if you count the radiologist for Proton Beam Radiation.

I think there are different types of radiation treatments as well, such as cyberknife, proton beam radiation, and gammaknife. Maybe others?

What "success" means has been discussed here. Maybe it needs to have like a 0-5 Success Scale, something like:
1. AVM is gone, no deficits at all
2. AVM is gone, minor deficits, but can function with only minor inconvenience
3. AVM is gone, but major deficits, patient requires significant assistance to function.
4. AVM not gone, but no deficits yet.
5. AVM not gone, but minor or major deficits.

I think that seizures can accompany AVMs also, but not sure if or how you would incorporate that, maybe a heading of "seizures", then a scale of None, occasionally, frequently. Drugs control the seizures: Y/N

Hope this helps. There's a tradeoff between too little info and too much info, and I don't know where that balance is.

Ron, KS

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Permalink Reply by Nea's Mom on December 18, 2009 at 10:57am

I was thinking of a very unsophisticated type of data collection... people post and I manually enter into a spreadsheet. But a form would be fantastic... do you know how to do that online? I could probably offer the use of a database server that could be used to house the database and that the form could talk to.

Kim Palmer said:

Hi, I had the same thought a few months back. I thought it would be useful to the medical community as well as AVM patients. I would be willing to help in any way possible with the endeavor... data entry, form creation.... whatever needs to be done.

Kim

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Permalink Reply by Kim P. on December 18, 2009 at 8:21pm

I think something could be fashioned either in Publisher or Access and made into a fillable PDF file. Not sure about that last part, I don't have the full version of Adobe. I'm sure there's got to be a free PDF file maker out there somewhere.

There could be a myriad of questions as Ron suggests and I was thinking that each AVMer could choose to answer all or some or of course none. Also each AVMer would have to be assigned a unique number so that if they update their form we can update the database accordingly. I have MS Access, haven't used it much at all but I can learn. Will look more into that.

I think first, as Ron suggests, we'd need to iron out what questions will be asked and how those answers would be compiled and published. Only those willing to volunteer their information and we would have to protect their privacy. I'm thinking that we'd have to have a way for them to sign-in and have the system automatically generate a number for them, say a 5-digit number. We would only be able to identify them by that number. That brings up forgotten password issues and such. I do not have any internet application knowledge.

Maybe I am making this far more difficult than it needs to be. Just spouting off the top of my head as the thoughts come. Not a good things for for someone whose suffered many bleeds. :-)~
Nea's Mom said:

I was thinking of a very unsophisticated type of data collection... people post and I manually enter into a spreadsheet. But a form would be fantastic... do you know how to do that online? I could probably offer the use of a database server that could be used to house the database and that the form could talk to.

Kim Palmer said:

Hi, I had the same thought a few months back. I thought it would be useful to the medical community as well as AVM patients. I would be willing to help in any way possible with the endeavor... data entry, form creation.... whatever needs to be done.

Kim

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Permalink Reply by Kristen R on December 18, 2009 at 9:33pm

I think this is a great idea and I would love to help wether it be giving info on my experience and/or compiling data that is collected. I think it will be very handy to give dr's when you complain of a symptom and they say "that has nothing to do with the AVM" even though it seems pretty common among those who have AVMs! Not sure if it was suggested but... 1) the location of the AVM and the side-effects you are having (also if the side-effects were always there or became an issue during or after treatment 2) follow-up care if the AVM is treated. Let me know what I can do to help!

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Permalink Reply by Chris on December 20, 2009 at 5:18am

I think that's a great idea too. It would be very useful for people.

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ModeratorPermalink Reply by Ben Munoz on December 20, 2009 at 8:55am

I think it's a great suggestion.

I'm happy to so many members willing to offer their medical information for the purposes of helping medical research. A large university or research hospital would be the ideal group to have this information, but no one has yet approached us. Eventually, someone will see the value of all of our experiences and ask for help putting together a database for medical research.

When that happens, I'll broadcast an announcement of how you can submit your personal experience and be included in any research study. If you know of any group doing research, please let them know about us and that we are willing to help.

Thanks for thinking about this, Nea's Mom. Thanks to all who replied and have a great holiday season!

Your Community Moderators

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Permalink Reply by Nea's Mom on December 20, 2009 at 3:00pm

OK, Ben. I'm happy to follow you lead in this. But it does sound like you have some volunteers ready in the wings is we are contacted.



Ben Munoz said:

I think it's a great suggestion.

I'm happy to so many members willing to offer their medical information for the purposes of helping medical research. A large university or research hospital would be the ideal group to have this information, but no one has yet approached us. Eventually, someone will see the value of all of our experiences and ask for help putting together a database for medical research.

When that happens, I'll broadcast an announcement of how you can submit your personal experience and be included in any research study. If you know of any group doing research, please let them know about us and that we are willing to help.

Thanks for thinking about this, Nea's Mom. Thanks to all who replied and have a great holiday season!

Your Community Moderators

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Permalink Reply by Kim P. on December 20, 2009 at 3:56pm

I'm sure that everyone that is willing to share their information is more than willing to help the medical community but I think they are also wanting to help other AVMers as well as themselves, like Kristen R said...
"I think it will be very handy to give dr's when you complain of a symptom and they say "that has nothing to do with the AVM" even though it seems pretty common among those who have AVMs!"

We do live in the information age and we have the technology that allows common everyday people to communicate and share. I suppose that is all we're trying to do, share, in the hopes of helping one another.

Ben Munoz said:

I think it's a great suggestion.

I'm happy to so many members willing to offer their medical information for the purposes of helping medical research. A large university or research hospital would be the ideal group to have this information, but no one has yet approached us. Eventually, someone will see the value of all of our experiences and ask for help putting together a database for medical research.

When that happens, I'll broadcast an announcement of how you can submit your personal experience and be included in any research study. If you know of any group doing research, please let them know about us and that we are willing to help.

Thanks for thinking about this, Nea's Mom. Thanks to all who replied and have a great holiday season!

Your Community Moderators

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Permalink Reply by Nikolaos Papadopoulos on December 20, 2009 at 4:20pm

fantastic idea pay it forward

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