Author Topic: "Only 20% chance of tumor swelling and increased symptoms from radiation"?  (Read 9305 times)

free2be

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Annamaria,

I agree completely. Certainly one doctor's opinion is not sufficient in most cases. And you have to feel you have their attention and they care about you as an individual, not just number 3 for the day. I have read several medical journal articles about this also. There are a few recent ones I wanted to get a hold of, but don't pay for them. I used to have free access at my old job as a medical writer. I edited these types of documents and so I can read them just fine, but I can't spend the money to get them now. The abstracts offer a good synopsis of the findings, though often miss what might be the one vital bit of information for you.

As others have noted though, don't get burned out with information overload. It can be very stressful and drive you crazy. If you are pretty sure in your gut that you are leaning one direction or another as far as type of treatment, seek out the best in that field and get a couple of consults. You'll know when it feels right.

Best wishes,
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Tumbleweed

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I’m researching heavy-duty what I should do (for 3 months now), but my observation so far is that one shouldn’t PROBABLY believe everything one get told vaguely by a doctor who is not focusing 100% of his/her time/effort/specialty on AN/meningioma issues, without a specific reference to some recent medical paper from a reputable institution --


Dr. Chang has treated more ANs (as of 2 years ago, well over 700) than any other doctor I know of. The treatment of ANs is his 100% focus/specialty. And as for a "reputable institution," doctors travel to Stanford from all over the world to receive their training in CK treatment. Dr. Chang never makes vague comments, as far as my experience goes. Anything he tells me is very deliberate and based on a profound amount of direct experience treating ANs.

An earlier post in this thread asked about how ANs are measured. Briefly: the three axes of measurement are oblique transverse (side to side on a horizontal plane), oblique antero-posterior (front to back on a horizontal plane) and oblique craniocaudal (top to bottom, or vertical). Some radiologists  give only two measurements; the best make and cite all three. Because the measurements are oblique (measured diagonally across the widest span of the tumor), the exact angle of measurement (and thus the exact dimension) is up to interpretation. This is one reason why two doctors reading the same MRI may cite slightly different measurements for the same AN.

Best wishes to all,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

6pick

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Quote

An earlier post in this thread asked about how ANs are measured. Briefly: the three axes of measurement are oblique transverse (side to side on a horizontal plane), oblique antero-posterior (front to back on a horizontal plane) and oblique craniocaudal (top to bottom, or vertical). Some radiologists  give only two measurements; the best make and cite all three. Because the measurements are oblique (measured diagonally across the widest span of the tumor), the exact angle of measurement (and thus the exact dimension) is up to interpretation. This is one reason why two doctors reading the same MRI may cite slightly different measurements for the same AN.

Best wishes to all,
TW

Tumble:

Thank you for being so clear with your dimension explanation. I should have guessed that it's just a 3-D (X-Y-Z) coordinate system from high school Algebra. X: horizontal left-to-right; Y: horizontal front-to-back; Z: vertical.

Mine was read in only two dimensions, 25 mm X 17 mm and from the MRI, it's clearly a lightbulb shape. I would judge then, that it's 25 mm long from the tip of the bulb into the canal and the diameter of the bulb is 17 mm. Does that sound right to you?

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Tumbleweed

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Mark, sorry for my tardy reply. I've been swamped at work and haven't had as much time as I want to participate in this forum.

Your 25mm measurement is probably the oblique transverse dimension, or that which goes from the lateral extent of the tumor inside the internal auditory canal (approaching the "fundus") to the medial extent (inside, toward the brain stem) of the tumor. Since that measurement is often the most important (as growth along that axis often impacts the brain stem in ANs that exceed roughly 2 cm), it is usually cited first in MRI reports. There is no telling whether the 17mm measurement is AP or craniocaudal without asking the "reading radiologist" who wrote up the report. Actually, you could determine this yourself by looking at your MRIs on your computer. After a couple hours of studying the images, you'll begin to figure out how to measure the tumor yourself.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

6pick

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Thank you, there is no obligation and I haven't been so attentive either. I am grateful for the time I am given (on so many levels   ;) )

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change