ANA Discussion Forum
General Category => Inquiries => Topic started by: inmaine724 on June 27, 2010, 11:34:45 am
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I know that there are no doctors, and people can't really give advice. Just wondering what you guys think? Waiting to hear from the doctor is insane!!!
http://www.facebook.com/album.php?aid=2068152&id=1412268748&l=ab54c313ec
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Danielle ~
I know you're in torment waiting to hear from your doctor but as you noted, we aren't doctors and cannot 'read' your MRI scan. Frankly, I wouldn't, even if I thought I could because, with no medical education or training I would (a) risk frightening you unnecessarily or, (b) possibly give you false hope. I could be wrong either way and that wouldn't be fair or helpful to you. Comparing your MRI photos to other people's MRI photos is also problematic and can easily lead to wrong conclusions on your part.
As hard as it is, I would suggest you try to do fun things and/or 'busywork' to distract yourself until you hear from the doctor on Monday.
Jim
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Hi Danielle,
I looked at your picture, but I am certainly not qualified to interpret it.
Just wanted to let you know I live in Portland, too.
Which doctor are you seeing?
Lisa
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Ha! Waiting is awful. I'm not even sure if he'll get in touch tomorrow. I really have no idea. You can delete it if you want to!
I'll post about what they say when he calls...
:-)
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My doc in Portland is Dr Dinnerstein at Maine Neurology, but my ENT ordered this.
I lived in Portland for about 12 years, worked at Dimillo's forever. We are up in Belgrade now.
E-mail me if you want!
...Danielle
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My late hubby lived in Waterboro Maine, so I made many trips there and did shop in Portland...It was the first US city I seen with a Canadian Tim Horton's...I havent been there in 3 yrs.
JO
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I am not a doctor - nor do I play one on the Forum - so just my two cents worth.
I don't see anything "alarming" about your MRI pic. So I'll venture to guess that you don't have an AN - or if you do that it's very small.
Don't hold me to this though. Let us know what the doctor says.
Good luck,
Jan
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Danielle .....
Looking back at your previous posts, it seems you were told you had an AN that was discovered on an MRI for another reason ..... and the purpose of this MRI was to determine the size of it now.
As with the others, I am not a doctor nor would I presume to be able to read your MRI. However, I do know the scanner takes many, many cuts (pictures) of the interior of your skull and the one you posted is only one of them. Each cut is slightly different and the radiologist looks at all of them to make the determination of the size of anything within the scanned views.
One thing I always do is pick up a copy of the MRI report as soon as it is ready (usually within 48 hours). The report should state the size and location of the AN, even if you cannot identify it from the images you pulled up on your computer from the CD ROM. The danger in reading the report yourself is to not panic if you read something you think might be serious, when it may be normal.
Like Jim said, I hope you can busy yourself with fun things to do right now ..... until you hear back from the doctor. ANs are typically very slow growing so you should have time to know all of your options before needing to choose a path of treatment.
Best thoughts.
Clarice
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Thank you all. They gave me the disc at the hospital before I left. This image was the 'cover' on the CD case, if that makes sense. So I thought it was relevant. Maybe not?? HA! I have no idea what I'm doing! But yes, they already confirmed it was an AN on an MRI from Feb of 09. So if there is nothing much on here, maybe it hasn't grown. I have to stop speculating!!
Give me a cervical spine MRI and I can read it as well as any neuroradiologist. I've been doing that for years, but this brain thing is so complex looking. Hopefully he calls tomorrow. I'm told this is very rare, and here in Maine it's even more so. My guess is that this will be of interest to him in the morning, regardless of the size, so I hope he takes the time to contact me as soon as possible.
Thanks again everyone!
...Danielle
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A medium-large AN in the CPA can be seen unambiguously on the MRI scan. A small one however may only show up in a slice or two, as Clarice mentioned. I don't think that the image on the cover is necessarily the appropriate slice. With all the precautions that everyone else has stated, I might speculate that you don't have a biggie. Small ones are sometimes very hard to see.
Marianna
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I'd like to add too, that you were discussing the dye in another post. If you had the dye (can't spell it without looking) it will show up white on the scans. That might help you a little. Good luck to you.
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Danielle .....
Looking back at your previous posts, it seems you were told you had an AN that was discovered on an MRI for another reason ..... and the purpose of this MRI was to determine the size of it now.
Clarice
Well then, all I can say is it's a damn good thing that I'm not a doctor, Danielle, or I would have just misdiagnosed you :o
Guess I shouldn't give up my day job ;D
Jan
PS to opp2 - the name of the dye is gadolinium.
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HA! My 8 yr old pointed and said "mommy, there are your eyes" (because I hadn't noticed!). So I read it much worse than you possibly could!
:-)
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let us know the outcome
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He called! It is small. It's 5X4.5x8.5. He referred me to Mass Eye and Ear in Boston. I asked about radiation and he said they generally don't do radiation in people who are surgical candidates because it can cause an 'incredible inflammatory process'?? What does that mean!?? I thought radiation was an option from everything I read.
At least it's small. I thought I would be in the watch and wait group. He said most likely not, because of my balance issues (I get room spinning episodes pretty frequently, though they aren't that big a deal!). Not sure what that means, but we'll see what happens!
Thanks everyone for your kind words through this whole process!
...Danielle
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Danielle ~
Whew! I'm glad for your sake that the waiting is over. I didn't realize that you had already been diagnosed with an acoutic neuroma and that this MRI was performed in order to define the size and location. Still, at least you have the information you need. As I've stated previously, I'm not a doctor but I have to question your doctor's comments about radiation being 'inflammatory'. Radiation treatments usually do cause tumor swelling, which I suspect is what the doctor meant, but surgery is only performed if the radiation fails to arrest the tumor's growth, which is a small risk, at best, and the surgery wouldn't normally be attempted on a tumor that was swollen. Massachusetts Eye and Ear Infirmary (associated with Harvard Medical School) is a fine facility that other AN patients posting here have used. Their Dr. McKenna is very popular with some of our Massachusetts-based posters. Here is link to the Mass Eye &Ear Infirmary website: http://www.masseyeandear.org/ (http://www.masseyeandear.org/). I hope your AN 'journey' will be a realtively smooth one from this point, on. Please keep us updated. Thanks.
Jim
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Thanks Jim. I'm confused about the radiation thing as well. I'm sure I'll know better once I go to Boston. I'm very surprised I'm not "watch and wait". It's so small...it doesn't make sense to me.
Thank you!
...Danielle
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I asked about radiation and he said they generally don't do radiation in people who are surgical candidates because it can cause an 'incredible inflammatory process'?? What does that mean!??
Good question. When I was diagnosed my AN was 1.5 cm and I was given the choice of surgery or radiation by my neurotologist who performs both. So I was a surgical candidate as well as a radiation candidate.
I've never heard of "incredible inflammatory process".
IMO, (and granted it, it's just my opinion since I am not a doctor) you could watch & wait. Your AN is so small that unless it is causing you huge issues that are compromising your quality of life it's my feeling that you could leave it alone for a while.
Jan
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Again...no medical doctor here, but I am a science teacher and have seen quite a few scans. Mine looked like it was ready to tee off on the 18th, so there was really nothing to discuss. It had to go - soon. But I know ANers with very small ones who still had similar symptoms and results as the rest of us with bigger ones. So.....size doesn't always matter - at least not JUST size. It's more like real estate...location, location, location. Your surgeons will know best. Good luck.
SUE