General Category > Inquiries
New and very anxious
ANSydney:
As LakeErie has said, you can get your radiologist's report simply by asking. You can also get your MRI images on CD. These come with measuring tools and a scale, so you can work out size yourself. What's more important than absolute size is growth with time. If it's stopped growing or slowing down, that's what's important.
You remind me of me in the first month following diagnosis. I was like a deer in the headlights of an oncoming car. I'm now over a year since diagnosis and things are looking OK. I'll wait until my 5th MRI (2 years) before relaxing somewhat more. In the first five months I was feverishly researching. Now I still do some reading and visit the forum, but it's as time permits and is not consuming me.
ANs are one area where increased knowledge and taking charge of your disease come in handy.
From what I can gather you have minimal symptoms and had them without progression for about 2 years. They are good signs.
I like Dr McKenna since he's the only one in the US that I know of that only treats if there is ongoing indications of treatment. There are other around the world, but the US seems to be different.
In the words of Dr Micheal McKenna, "The best treatment is no treatment, if you can do it" ( https://www.anausa.org/resources/videos/support-group-video-library.)
If you need any help taking your own measurements, I'd be happy to help.
All the best.
dsf767:
--- Quote from: ANSydney on November 27, 2017, 02:12:34 pm ---As LakeErie has said, you can get your radiologist's report simply by asking. You can also get your MRI images on CD. These come with measuring tools and a scale, so you can work out size yourself. What's more important than absolute size is growth with time. If it's stopped growing or slowing down, that's what's important.
You remind me of me in the first month following diagnosis. I was like a deer in the headlights of an oncoming car. I'm now over a year since diagnosis and things are looking OK. I'll wait until my 5th MRI (2 years) before relaxing somewhat more. In the first five months I was feverishly researching. Now I still do some reading and visit the forum, but it's as time permits and is not consuming me.
ANs are one area where increased knowledge and taking charge of your disease come in handy.
From what I can gather you have minimal symptoms and had them without progression for about 2 years. They are good signs.
I like Dr McKenna since he's the only one in the US that I know of that only treats if there is ongoing indications of treatment. There are other around the world, but the US seems to be different.
In the words of Dr Micheal McKenna, "The best treatment is no treatment, if you can do it" ( https://www.anausa.org/resources/videos/support-group-video-library.)
If you need any help taking your own measurements, I'd be happy to help.
All the best.
--- End quote ---
Well I have the CD and think I figured it out if my measurements are correct its fairly large (about 3.7cm at its largest spot)
https://imgur.com/a/IvNT6
Citiview:
dsf767
You've used the forum well as you have identified the most experienced team in all of New England.
Good Luck with your appointment and God Bless during this holiday season.
ANSydney:
Hi dsf767,
Your doing all the right things. You've made measurements and posted your measurements. Great work. (I wish more would!)
I remember when I was diagnosed just how hard it was to work out where to measure things from. You've done very well. For better information, take a look at https://www.anausa.org/smf/index.php?topic=23670.msg979775078#msg979775078
When measuring these tumors, the intrameatal part (inside the inner ear canal) is not included, as shown in the above post. I would rate your tumor as 30 x 32 mm. If you look at the coronal view, you can also work out its craniocaudal height (the third dimension).
We are very similar in that we have some hearing loss and virtually no other symptoms. My tumor is about 25 x 25 x 32 mm. So the height is the bigger concern. Your tumor is large, but if you want some pertinent reading, https://www.ncbi.nlm.nih.gov/pubmed/25120176
I hope your tumor has stopped growing. You'll only know in 6 month's (or so) time.
The dilemma is your tumor is large, but your symptoms are small. Again, very similar to my situation.
Keep in touch.
dsf767:
--- Quote from: ANSydney on November 27, 2017, 04:59:18 pm ---Hi dsf767,
Your doing all the right things. You've made measurements and posted your measurements. Great work. (I wish more would!)
I remember when I was diagnosed just how hard it was to work out where to measure things from. You've done very well. For better information, take a look at https://www.anausa.org/smf/index.php?topic=23670.msg979775078#msg979775078
When measuring these tumors, the intrameatal part (inside the inner ear canal) is not included, as shown in the above post. I would rate your tumor as 30 x 32 mm. If you look at the coronal view, you can also work out its craniocaudal height (the third dimension).
We are very similar in that we have some hearing loss and virtually no other symptoms. My tumor is about 25 x 25 x 32 mm. So the height is the bigger concern. Your tumor is large, but if you want some pertinent reading, https://www.ncbi.nlm.nih.gov/pubmed/25120176
I hope your tumor has stopped growing. You'll only know in 6 month's (or so) time.
The dilemma is your tumor is large, but your symptoms are small. Again, very similar to my situation.
Keep in touch.
--- End quote ---
Are these any better?
https://imgur.com/WAkD0sa
https://imgur.com/HxNZJBt
so most likely looks like mine is around 30mm x 28mm x 29mm
Which is still quite large a little closer to your measurement if I have it right
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