ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: BMac2358 on November 17, 2008, 01:05:54 pm
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NF2 guy here, been in the patient directory for a while. Done did surgery, FSR and GK. Latest MRI showed significant growth of the FSR schwannoma after years of no growth. I want to know how I go from 1.8 to "moving in on 3.0cm" in 2 years. My neurologist tosses the films up on the wall...says better go get it addressed. So before I purchase that ticket out to LA I head to Hopkins. Rigamonte throws my films up on the wall, 2 years apart, takes out his caliper and starts comparing oranges to oranges instead of reading the radiologist's report. "No growth on any tumors, if anything they may be slightly smaller". He had me measure them with him.
I remember years back a fellow recommending we all learn how to read our own films instead of trusting the radiologist's report. I ignored him. It does not look that difficult. Cost me a month or two of anxiety but you can be sure I'll be getting a new pair of calipers from Santa this year! Better yet, anyone know if there is affordable software out there for us to view scanned images to scale on our puters?
Lesson: Educate yourself, get more than 1 reputable opinion on everything.
My thanks and best to all of you, this site has grown nicely over the years and provides an incredible source of information and encouragement for those of us who are challenged each day of our lives. ~Bill Macdonald
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Hi Bill, It sounds like you have already had some experiences with AN. I totally agree with you about the need to be educated.
I had possession of two different MRIs on CD that I had to physically take to my surgeon in another hospital/town. While at home, I loaded them on my computer and had no trouble seeing the invader and the differences in four years of time that had passed between MRIs. I even saved a couple of the images and made them into pictures that I took with me to the hospital for surgery. The staff loved them. I am no pro at reading MRI, but the tumor was pretty easy to see.
SUE
(http://i474.photobucket.com/albums/rr106/vogstar5/Adversityposter.jpg)
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Hi to Bill and Sue,
Nice pic you have there, Sue. How did the white thumb print get on it? :D
Bill, I'm glad to see that you have posted. Waiting a year to post seems like a long time, but maybe for NF2'ers patience comes naturally. ;)
Have you had a chance to see an MRI that has been put on a CD? The software for viewing it, which is usually also on the CD, includes a measuring tool, and I think you can adjust the scaling so that two MRIs are matched for size.
My favorite thing on the CD I got is viewing two or three views at the same time, one on each axis. You can turn on a feature that synchronizes them, and shows a line in each that you can orient by. As you move the scroll wheel on the mouse, it travels back and forth through your head in one view, and the lines move in the other two to show you where you are. Very cool!
You make a good point, though, that it is worth checking the measurements before doing anything hasty. As the carpenters say, measure twice, cut once - or not at all, in this case.
Steve
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Hello Bill
you bring up a very good point about checking and double-checking, and if possible figuring out how to read your own MRIs.
My radiologist reports and various doctors opinions regarding the size of my AN have been ranging from 2.4 cms, to a whopping 3.5 cms and various sizes in between. These guys would have driven me nuts if I had not done my own research and done my own measurements. So I can't stress enough how important it is to keep track of your own CDs and make sure you double check whatever the radiologist reports.
Marianna
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This is craziness! Not only do we have to do our own research about these tumors, make our own choice on how to treat them, post treatment how best to learn to live with the "new" you, but now we have to learn to measure these "blobs" ourselves!?
What's next for us--taking classes on how to perform radiation or microsurgery! Sign me up for the Acme School of Boogerectomies! ;)
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Hi Bill,
In the immortal words of Gilda Radner as Roseanne Rosannadanna (Steve - if you're reading this, you may remember she was a favorite of mine), It's always something -- If you have an AN you have to decide how to treat it, it it grows back you have to decide how best to beat it. I'm all for being proactive but now it seems we have to be more vigilant than most people and at least as good as the doctors in understanding our own MRIs. Your experience is certainly a word to the wise.
Best wishes for continued good news MRIs,
Wendy