ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: ellenvig on August 18, 2008, 09:08:33 am
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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
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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
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I was the same facility all 4 times. I'm still waiting to hear from my doctor.
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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
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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
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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
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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. ;D
Marci
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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.
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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
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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
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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. :D
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
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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
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Jan,
Could the hidden toilet be a new fad for redoing master bathrooms??? I thought it was brilliant.
M
(sorry for brief hijack)
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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.
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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
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Hi Ellen,
Just checking in with you. I really am keeping you in my thoughts and prayers. I hope that Dr. Noren gets back to you soon with good news.
Take care,
Theresa
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Ellen:
I'm among many waiting to learn if your doctor still believes you only have scar tissue and that the AN isn't re-growing. My prayers and hopes for a 'dead' AN are with you and I trust you'll let us know the 'verdict' when you do.
Jim
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Thank you all so much for your thoughts and well wishes! I STILL have not heard from Dr. Noren. Even if it has turned to scar tissue, there seems to be one area that is growing. Hopefully he'll get back to me soon. In the meantime, I am going to schedule a consultation with another neurologist for a second opinion.
Yes, that toilet was too funny to not photograph. :)
I'll post once I have news!
Ellen
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Ellen
What is the size for your most recent MRI? Does it measure the same as the previous MRI, so therefore no growth? Just curious.
Kathleen
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Good luck, Ellen, and try not to get too upset before you get a professional opinion on your followup MRI. Really, it's the size that matters. I remember reading one Japanese research report that concluded that darkening of the AN on an MRI doesn't seem to be a predictor of tumor death (although that study seemed flawed in some ways). But my point is you might be doing just fine. As long as the tumor doesn't continue to grow, you're okay. And an increase in size might only be due to swelling and be transitory. Hang in there. And please do let us all know what your doctor says.
Best wishes,
Tumbleweed
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Keep in mind that dead scar tissue and an untreated tumor appear identical on an MRI scan. They are both bright white. As Tumbleweed notes, that is why doctors rely on the size of the mass to determine if treatment has been successful -- as it is 97% of the time or so.
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Hi Everyone,
Dr. Noren said there has been no change in the size of the tumor, and that the white is scar tissue, so all is good not to worry.
Given the fact that I have had a resurgence of minor symptoms and my almost perfect hearing has gone down 10dB in the upper registers since January, I scheduled a second opinion.
So, I had a consultation with a different neurologist from a different hospital yesterday.
The area that seems to me to be growing also concerned him. He is going to do a volumetric assessment but also wants to talk to a radiologist to see if there is some other test that can be done. Viability study? Do any of you know of another test that can be done?
He said he'd get back to me in a week or two.
Thank you all for your concern!
Ellen
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Hi Ellen,
I'll take Dr. Noren's answer. :)
There was a discussion recently about how to do an MRI that would help distinguish scar tissue from regrowth. Here is one of the posts:
http://anausa.org/forum/index.php?topic=7131.msg74338#msg74338
I don't know if that would help; I think that case was a surgery one. Other than that, I don't know if there are other tests, besides waiting a while and doing another MRI.
Thanks for posting back, anyway. Hope it turns out well.
Steve
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Given the fact that I have had a resurgence of minor symptoms and my almost perfect hearing has gone down 10dB in the upper registers since January, I scheduled a second opinion.
Ellen, was your recent audiogram taken at the same facility and by the same audiologist as the previous one? If not, the 10 dB of diminished response might be simply due to a lack of consistent test conditions. Audiogram data is measured and recorded in 5dB increments. Microphonic headphone cables or noise from an HVAC system, for example, on the most recent test could easily cause a 10dB "loss" at high frequencies. If your ear drum also had a backup of air pressure (from, say, flying or having hay fever just before the test), that could also easily give worse results.
Just something to think about, before you make any firm conclusions...
Best wishes,
Tumbleweed
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Ellen,
I'm sorry I didn't catch this thread earlier! I can't even imagine the stresses this must be putting on you - to think you were done, and now worrying again. I add my voice to sending you all positive thoughts and hope you can get to the bottom of this soon!
Katie
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Given the fact that I have had a resurgence of minor symptoms and my almost perfect hearing has gone down 10dB in the upper registers since January, I scheduled a second opinion.
Helen,
I have been warned by my doctors (both radiologist and ENT) that hearing can go gradually down over the course of months or years after GK. This is due to long term damage to the nerve/reduced blood flow. So diminished hearing by itself is not necessarily a sign that the AN is growing.
Marianna
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I got a call from the doctor and, after consulting with a radiologist, they believe that the tumor is just changing shape. They size of the tumor does not appear to have changed, but they still have to complete the volumetric study. Beyond that, there are no other tests they can do. The viability study he refered to, he discovered, is only for malignant tumors. They have no data for ANs so far for comparison.
The change in shape would account for the symptoms, as it is pressing on different areas.
Yes, the audiogram was in the same facility, same equipment, same audiologist.
Hi Katie!
I'll post the result of the volumetric study once I get it! Thanks for your support!
Ellen
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Just wondering if anyone knows how Ellen is doing? I don't see any posts from her since 2008. My last MRI is very similar to her 2-yr MRI, so I hope this turned out to be just normal scarring and nothing more.
-jb
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JB - please keep us posted. Waiting to discuss the MRI results is one of the most stressful experiences imaginable. Just curious: did you get a radiologist report? What did the radiologist report say in comparing the scans? I try to always get a written report before I go to see my doctor, that way I also know what questions to ask. Do you still have follow-ups with Dr. Gangon or is someone different following you at GT?
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I wasn't able to get the full report yet, but saw a couple of the measurements - 1.5 mm larger in one dimension, 2 mm smaller in another... Nothing conclusive but I'm seeing my doc tomorrow, so I'll get the low-down then. I live in NC and see a local doc for my follow-up. (I think Dr. Gagnon left GT?) I posted on CK forum and Dr. Medbery says my scan appears pretty normal. Still a bit anxious though as I've had sporadic flare-up of some symptoms in the past few months.
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I posted on CK forum and Dr. Medbery says my scan appears pretty normal. Still a bit anxious though as I've had sporadic flare-up of some symptoms in the past few months.
JB, it might help you to know that symptoms flaring up don't necessarily mean anything relating to tumor size or the treatment's efficacy. I've had flare-ups happen twice in the weeks leading up to my followup MRIs, and in both cases my tumor actually shrunk in size! Once the tumor damages your cranial nerves, you are susceptible to flare-ups regardless of what the tumor is doing. It's like having any other weak part of your body; when subject to stress, it's the first thing that's going to start barking.
So please put your mind at ease. Your MRI, according to Dr. Medbery, shows you're doing okay.
Best wishes,
TW
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Just to update, I saw my doc today and the final verdict is that the tumor is a bit larger. It's still possible that it's just changing shape ("evolving", as doc says) as there appears to be less tumor in the IAC now (really surprised at this with all the tinnitus and fullness I've had lately). My doc doesn't want to jump to any conclusions on regrowth vs. no regrowth, so I'll need to go back in 6 months for yet another MRI. Feel like I've spent 4 yrs in a circle to arrive back at W&W stage. ???
TW: I appreciate your point that size change either way can tweak the nerve. I'm hopeful that the change they saw in the IAC component might be causing a temporary symptom flare.
Also, I PM'ed Ellen, so maybe she'll let us know how she's been doing.
Thanks,
JB
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TW: I appreciate your point that size change either way can tweak the nerve. I'm hopeful that the change they saw in the IAC component might be causing a temporary symptom flare.
To clarify, that's not what I meant to convey. What I tried to say is that your tumor doesn't have to grow in size for your cranial nerves to act up. They are weakened and will act up every now and then when your body overall isn't 100%. To make an analogy: If in the past you had a very bad respiratory infection that scarred your bronchials, you would be more susceptible to bronchial problems/symptoms going forward. It's a similar thing with cranial nerves: once damaged (by an AN), they are bound to act up in the future -- even if your tumor isn't growing larger -- because they are in a weakened state.
I hope that makes sense. Bottom line: flare-ups are not necessarily a cause for alarm. It doesn't say anything about your tumor size.
Best wishes,
TW