Author Topic: Decisions, decisions...  (Read 3605 times)

diverjeff

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Decisions, decisions...
« on: August 30, 2009, 03:58:50 pm »
Hello everyone,

Though I haven't posted for about a year, I often drop by to read the posts of those who have. Always encouraging!

My wife went in for her annual MRI and found the AN had grown about 1mm in both length and width. It appears a little more "bulbous" as it protrudes from the canal. The neurotologist said, Well, it looks like you have one that is going to grow. These are your options."  After going over the options and answering a few questions, we asked the doctor what he would do in our situation.  He said that LINAC treatment would probably be 5 treatments over a weeks time. He said that while GK was the original type of radiation treatment that STR seems to be the treatment of choice for many of these smaller AN's (hers is about 2 cm) And based on here age of 52, the recovery is less stressful on the body. And we all know the challenges of surgery.

So here we are.  The doctor did say that we are in no hurry. We told him we were in the process of building a house and he said, "Go build your house."  He did suggest that we make a decision before next August.

Sometimes decisions like these are so difficult to make. But, since we have the time, we can read, read, read.

Thanks all and I'll check back from time to time.

Safety & blue skies,

DJ
A father gave his son a stick and asked him to break it.  The son broke the stick with ease.  Next the father bound some sticks together and asked his son to break them. No matter how he tried the son could not break the sticks.  The father said, "That my son, is the strength of a family."

Kate B

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Re: Decisions, decisions...
« Reply #1 on: August 30, 2009, 05:58:44 pm »
Jeff,

Welcome back to the site.

Since there is no hurry, you have the time to make the decision right for her age, size of her tumor and lifestyle.

Let us know if you have questions.

All the best,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

TJ

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Re: Decisions, decisions...
« Reply #2 on: August 31, 2009, 02:11:57 pm »
This is our biggest challenge, what treatment is best for me!  There are so many things to consider, not just the treatment, but which ones have the least side effects.  Keep reading in the forum as many have contributed excellent advise.

Best of luck on whatever road you take.

TJ

ppearl214

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Re: Decisions, decisions...
« Reply #3 on: August 31, 2009, 02:26:47 pm »
Hi Jeff

thanks for the update and good to see you since its been a while.

I'm raising an eyebrow on one thing.  You are noting that your wife's AN grew by 1mm?  Just FYI .... head MRI's have a total margin of error of approx 2mm, so the 1mm is within the total margin of error. Docs will note that the only way to truly find out its size is by taking it out.  No 2 docs reading the films will "read" the same way or measure the same way.   So, to be honest with you, it really hasn't done much if they are only noting 1mm........ if they had said 4mm or 5mm difference, then... absolutely, a major difference.

I agree with the doc... build the house as I know you all will make it very beautiful! Sounds like no true change and hang in there.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Tumbleweed

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Re: Decisions, decisions...
« Reply #4 on: September 04, 2009, 02:18:50 am »
I'm going to echo what Phyl said: 1 mm of growth is statistically inconclusive. Because an MRI takes images in "slices" (cross-sections) of the brain that are spaced apart, and each MRI takes the slices at slightly different cross-sections of the brain, there is a 2mm margin of error. Most radiologists would look at your most recent MRI and conclude that your tumor is the same size, because it's impossible to tell whether it got 1 mm bigger or the MRI simply took an image at a slightly thicker part of a tumor that is nevertheless the same size as it was before.

Also, as Phyl noted, ANs are measured a little bit differently by each radiologist. Ask two radiologists what the dimensions of the same tumor are, and you might get two different measurements that are 1 to 2 mm different from each other along any axis of measurement. That's because all three axes of measurement are oblique, or measured at an angle. So, for example, the oblique transverse measurement may not be exactly along a perfectly horizontal plane but is instead measured roughly from the tumor protrusion that is most medial (toward the inside of the skull) to that which is most lateral (towards the the outside of the skull). If the medial extent of the tumor is toward the bottom of the tumor and the lateral extent toward the top, for example, the transverse measurement would be slightly angled from bottom to top. But another radiologist might measure it along a completely horizontal plane, which would exclude the protrusions at either end from the measurement, thereby arriving at a slightly smaller measurement. This is just one example of how two radiologists could look at the same tumor and come up with different measurements.

Bottom line: 1 mm of "growth" is completely inconclusive. Either the MRI took a wider slice of the same-sized tumor, or the radiologist measured it differently this time, or your tumor has indeed grown by 1 mm. Or it could've been 2 mm bigger two MRIs ago (and that MRI just happened to take a 2mm smaller "slice", missing the growth) and is now 1 mm smaller compared to then (-2 mm of overlooked growth two MRIs ago minus +1 mm larger size shown on the current MRI = -1 mm of growth, or a smaller tumor). Any one of these scenarios could be true. There's no way to know.

If your symptoms are getting worse or you just want to take action and "get it over with," those are valid reasons for seeking treatment now. But concluding that your tumor has gotten bigger is not necessarily valid. Note that some tumors can stay the same size for over 20 years (according to Dr. Derald Brackmann at House Clinic). So please don't feel like you must seek treatment now because your tumor is growing. That may not be the case. At the very least, if you're concerned, you should seek a second opinion.

Sincerely,
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

suboo73

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Re: Decisions, decisions...
« Reply #5 on: September 04, 2009, 04:56:17 am »
Hi Jeff,

Glad you stopped by to give us an update!

I am 53 years old  :o , no other symptoms except hearing loss and one bout of vertigo this past January.
My doc said he would be interested to see my one year MRI later this year - (me too!) and suggested i 'do something' of the AN grows to 1.5cm.
Well, as much as i often get alittle crazy with my W & W mode, i figure with no other symptoms i can wait some more.
And I have some other things to worry about right now - my dad is in the hospital, and we will go visit this weekend.

Sounds like you have time to make any decision about treatment.
So - i agree with Phyl & TW - the growth sounds somewhat inconclusive, and you don't need to rush into anything.

----------------------
You are building a new house, how wonderful!   :)
I hope you and wife can enjoy this time together and finish this great project without worrying about the AN for now.
Just keep monitoring the AN and consider contacting the doc if other symptoms develop.

The AN journey indeed is a roller coaster ride!  
When i get frustrated, confused, etc - i am so thankful for the wonderful folks here on the FORUM that keep my sanity in check!

All my best to you and your wife!
Maybe, you can send us a pic of the new house when it is all done.

Sincerely,
Sue





« Last Edit: September 04, 2009, 05:03:07 am by suboo73 »
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Mickey

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Re: Decisions, decisions...
« Reply #6 on: September 04, 2009, 09:27:16 am »
I agree! 1.5 is about a fair size to start intervention depending on your age. Of course symptoms along with location are very important. These are the basic criteria I`ve set for myself W+W. There is alot going on in the pipeline on AN`s and I`m assuming that treatment and discoveries will continue to get better and better. I must say my ultimate goal is to not intervine unless  some kind of tumor reducing pill is introduced. Right now I`ll stick to whaever research I have done to combat this naturally. Best wishes, Mickey