I'm back, unfortunately.....

[ellenvig]

I just had my 2-year post-GK MRI this morning.  At my 6-month and 1 year, there was lots of black.  Black is good.  Black = dead.  Today's scan NO BLACK.  I mean AT ALL!

I posted the pictures on my site:

http://savyon.com/ellen/AN.htm

I'll definitely choose radiation again over surgery, but I don't know if I want GK again.  I chose it becasuse of its accuracy but also because my children were so young that I couldn't handle going through a fractionated treatment.  My hearing is still almost perfect and my facial nerves are fine, but it took a few months for the nerve damage from the screw sites to heal.

Now that my children are older, I need to go back into research mode and figure out what's the right choice for me. 

I'm just so bummed....

Ellen

[HeadCase2]

Ellen,
  Sorry to hear about your latest MRI results.  I would wonder about the inconsistency of the results.  Necrosis and then no necrosis.  Was the most recent MRI on the same type of MRI machine? Is it worth redoing the MRI?   Has it ever been observed before that an AN exhibiting necrosis can "recover"?  What did your doctor say about that?
Regards,
  Rob

[ellenvig]

I was the same facility all 4 times.  I'm still waiting to hear from my doctor.

[jb]

Ellen,
I've seen reports where the dying/dead tumor begins to enhance (turn white) again on the MRI.  I'm not sure why a dead tumor would enhance, but I'm pretty sure that's the case.  I'm not trying to diagnose one way or the other, just saying the situation may not be what it appears to us laymen.  I see you have a very experienced doc, so I'm sure he'll figure it out.  I hope you get to speak to him soon.

Good luck to you and thanks for posting the pics.
JB

[ellenvig]

I got an email back from the doctor that it may be scar tissue.  He said scar tissue has its own blood supply which is why it shows as white.  He'll receive the CD tomorrow and let me know. 

Thanks,

Ellen

[mk]

Ellen,

This may not seem as alarming as you think. In the medical literature (which I have read tons of), there is frequent mention of "transient" darkening, described as darkening in the first 6 - 12 months, while re-appearing white afterwards. My doctors mentioned this possibility as well.
By itself, this is not a problem. The important thing is to make sure that there is no increase in size. As long as you have control of the growth, you are probably fine. You may actually have good control, with no darkening at all. You didn't mention what your measurements were, I am sure you wil get the report. Just by looking at your images, it didn't seem that there is any major change, but of course your doctors will investigate that.

Marianna

[MAlegant]

Ellen,
I hope all will be well once you speak to the doctor.  Try not to worry until you know you have something to worry about.  I'll be sending black thoughts to your white blob from here in Ohio.   
Marci

[windy]

Ellen,

I bet your white areas in the tumor are in the stage that Marianna has found through studying literature.  I bet you are in good shape.  This is my sincere hope for you!

I noticed you stated it took you a couple of months to get over the pin sites.  I fear I may be headed that way.  My pin sites continue to hurt and I still feel numb on one side of my head.  My GK facility stated it was not normal, but I have seen others who had a problem for a while.

I wish you the best in regard to your tumor!  Please let us know what you find out.


 

[ppearl214]

Hi Ellen,

will be curious to see what Noren says to you as well... hang in there, I have a feeling its nothing to worry about. Continued wellness wishes and hugs to the kids!

Phyl

[tsl]

Hi Ellen,
We met at the first brunch I went to at Maxwell's.  Just wanted to let you know that I'm keeping you in my thoughts and prayers for good news from your doctor.
Take care,
Theresa

[sgerrard]

I am so happy to see Ellen post again. Her web site has wonderful pictures of the hidden toilet in her room at the hospital. 

I bet $10 the MRI result is fine; I think it is quite common for dead tumors to fill back in, and show up white again. Hope we hear soon.

Steve

[leapyrtwins]

Ellen -

I'm praying the others are right and your results are nothing to worry about.

Please let us know what the doctor says.

BTW, hidden toilet, who knew?

Jan

[MAlegant]

Jan,
Could the hidden toilet be a new fad for redoing master bathrooms??? I thought it was brilliant.
M
(sorry for brief hijack)

[okiesandy]

For about a year mine showed black center. Now it is all white. Neuro-surgeon and radiation oncologist both say normal. I was surprised the black was gone.

[Sefra22]

I hope everything turns out all right for you Ellen. I am curious to learn what you hear from the doctor.
By the way, I had the "hidden toilet" too! I thought it was really cool. Maybe were had the same room.
Lisa