Author Topic: Findings on 6 month post GK MRI  (Read 3482 times)

Joey

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Findings on 6 month post GK MRI
« on: April 15, 2009, 08:03:41 am »
Hello.  Just a little puzzled here, and I know I saw a similar post somewhere recently about findings on an MRI.  I spent the day at Mayo yesterday.  Good news is it was obvious on the scan that the inside of the tumor was changing colors.  In the words of the neurologist "I'm pleased by what I'm seeing."  No shrinkage which was not a surprise.  But no swelling at this point which he said was excellent.  He then went on to show me a new finding, a white shading on the front right part of my brain; said it could be due to 3 things:
1)  possible (small) stroke, which he said was "not likely"
2)  people with migraines sometimes have this indicator - I've had a few, mostly just ocular type
3)  "young" women sometimes have portions of "myelin___ something something" and of course at this point I was a little stressed and not wholly concentrating and can't recall the exact words.  Anyone??

In wrapping up the above three points, he did say they were not of particular concern and not to worry about but would just be compared in the next 6 month MRI....

At the beginning of our visit, he did a thorough neuro exam which in retrospect I think was to rule out the stroke issue.....  I was even asked who the Vice President is.  I told them, along with the name of Obama's new dog. 

My hearing has diminished some.  I'll be checking in later when I have written reports, but they told me there is some decline with that, which I had guessed before going in.  It was funny to me, but Dr Link mentioned that if it does not decline much more down the road, he thinks it may be advantageous for me to possibly have the hole in that eardrum repaired (ruptured during previous ear infection.)   

That's about it, just checking in.   Joey~~
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

mk

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Re: Findings on 6 month post GK MRI
« Reply #1 on: April 15, 2009, 07:27:55 pm »
Hello Joey,

It is good to hear from you, I have been wondering about your progress.
So it seems that all is good, with tumor darkening and stable size. And you avoided swelling, this is excellent.
What about that temporary facial weakness that you had experienced, I suppose it is long gone?

As for this other strange finding, could the doctor have mentioned about the "myelin sheath" ? I have heard this term from my dentist, it is the "layer" surrounding the nerves, responsible for transmitting signals  ??? or something like that. You may want to wait for the written radiologist report and look it up. But if the doctor was not concerned, everything is probably fine so you shouldn't worry about it.

Your news comes after a series of good radiation reports in the forum. You certainly have a good reason to celebrate. :D

All the best and keep in touch,
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

sgerrard

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Re: Findings on 6 month post GK MRI
« Reply #2 on: April 15, 2009, 07:34:49 pm »
I had some "nonspecific white matter changes" or something like that on my MRI report. I was also told that the first time they are reported, they don't mean much. It is the comparison over time that matters; if they change from one MRI to the next, then something is going on.

Congrats on a good report. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Joey

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Re: Findings on 6 month post GK MRI
« Reply #3 on: April 16, 2009, 11:59:01 am »
Thanks Marianna and Steve for the congratulatory words - I am doing better and am ready to pronounce myself as having way more good days than bad.  The facial weakness has all but disappeared.  I do notice that if I don't sleep enough, it comes roaring back to life and my eye becomes quite involved.  But for the most part things are under control and I'm living life.  My balance has taken a hit - and is another thing I have had to learn to manage.  Walking two dogs in the dark has become a trick.  I have learned not to stand on a chair to get to tall cabinets in my kitchen (that is what my 6 foot 4 husband is for.)   I was told, again, to stay as active as I can.

I am certain that myelin sheath is the term that Dr. Link used.  Something about the myelin shedding or some such jargon.  They don't feel need to go into detail for something with no need to treat, unrelated to the AN.  But it does relieve my mind knowing others have heard things like this too.  I have some bad neurological karma in my family (Mom with Parkinson's and much older sister with Ahlzheimer's makes me worry a bit and wonder if I'm the next strike on the family curse.)  On the bright side, I accomplished my first MRI without the "I don't care" pills.

Steve- I checked out and enjoyed the hat pics and the instructions.  I've been on a felting rampage lately, but have also started ordering from KnitPicks because I discovered their great yarn.  They are awesome!    Same with everybody here, of course.

Regards  ~Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

ppearl214

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Re: Findings on 6 month post GK MRI
« Reply #4 on: April 16, 2009, 01:24:40 pm »
Joey,

re your MRI and AN findings... truly, congrats! :) Great news!  As for the other findings, I am not sure but hoping your dr will help guide you on that.

As for your AN, continued wellness 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: Findings on 6 month post GK MRI
« Reply #5 on: April 17, 2009, 01:29:52 am »
Joey: necrosis and no swelling, what's not to like?  :) Congratulations on a great report. I really wouldn't worry about the other vague stuff your doctor said. It's obvious they are not concerned. I, too, was told something similar to what Steve reported, regarding my own MRIs. It's probably inconsequential. Now forget about all this for the next six months and enjoy life!

Best wishes,
Tumbleweed
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

Joey

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Re: Findings on 6 month post GK MRI
« Reply #6 on: April 17, 2009, 07:32:56 am »
 :)  Thanks Tumbleweed!!  I turn 47 this weekend and what's not to celebrate?  There is a lot to be thankful for.  Again at Mayo, I looked like the least likely person to be "sick". 

Thanks also for the reassurance.  It's always a good feeling here when someone says, oh yeah, me too, nothing to be shook about".   The first time you hear something new like that after a test, it sort of nags in the corner of your mind.  I'll go about business and try to age well.

Did anyone else here have to stand on one leg with your eyes closed and try to balance - on neuro doc's command when they checked you over?  I'll know to prepare for the next visit, but he's never pulled that one before.

Soon to be older Joey~~~

Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

Tumbleweed

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Re: Findings on 6 month post GK MRI
« Reply #7 on: April 18, 2009, 01:18:31 am »
Yeah, they made me stand on one leg with eyes open and then with eyes closed. But I already knew I'd fall over once my eyes were closed. I'd been monitoring my balance function for years by doing that.

Happy birthday, Joey!

Best,
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

mk

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Re: Findings on 6 month post GK MRI
« Reply #8 on: April 18, 2009, 11:05:02 am »

It's funny that I asked my hubby and daughter to do that test once and they both failed it!

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.