I'm back, unfortunately.....

[tsl]

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

[Jim Scott]

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

[ellenvig]

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

[Kathleen5306]

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

[Tumbleweed]

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

[fbarbera]

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. 

[ellenvig]

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

[sgerrard]

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

[Tumbleweed]

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

[krbonner]

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

[mk]

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

[ellenvig]

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

[jb]

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

[novagirl]

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?

[jb]

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.