64,000 dollar question ?

[tony]

OK this is one for all the experts out there :
If you have had GK/CK/ even FSR
how do you/or anyone else tell the difference
between swelling, post rad treatment
and ongoing growth because the dose may not have worked ?
I would have thought 12-18mths out
-the one must look quite like the other
sorry .......I dont know the answer either
Best Regards
Tony

[Sue]

Interesting question Tony.  I would think that the doctors would be looking for signs of necrosis...the black center...to see if it's dying. If that hasn't happened yet, then I guess that would send up a red flag that something isn't going as expected.  My AN hasn't shown any signs of swelling since my GK, nearly a year ago.  So can it still get bigger even though necrosis is there?  I didn't ask my doctor that.

Sue in Vancouver USA

[macintosh]

There's a study out there--I'll see if I can find it again--that says that about 30% of radiated ANs get slightly larger in the first year after treatment, and then stop growing. So I'm assuming (since I got zapped six weeks ago) that it's entirely possible that I won't know if radiation worked until January of 2009. That's life.

[macintosh]

After further review--there are multiple studies out there on this question. They differ in details, but the general outline is that for one to two years after radiation, some ANs can show growth that is difficult to distinguish between transient swelling or real growth. In exceptional cases, it can take up to three years to see definitive signs of tumor control. Or, for the lucky ones, there can be visible signs of necrosis in the first year. The good news is that even most cases that do not show short term necrosis do NOT need additional treatment. On the pubmed.gov site, some of the studies that address this question (under the seach string <acoustic neuroma radiosurgery effects>) have as principal authors Huber, Hasegawa, and Nakamura. I'm sure there are other studies that also address this question.

Mac

[Musicman]

I haven't had my treatment yet, but I was told to not be surprised if at 6 months there was some enlargement.  My physician said it's like turning your ankle; it swells.  Same thing is true when these tumors get zapped.  They have a reaction.  They swell.  It just tends to be 6 months to a year later!

[elise]

i'm a new reader...happy to find this site ...i had radiosurgery in 2003 for a small AN( 3/5 mm) on the right ... the procedure was smooth,  post treatment trouble was nonexistent, i proceeded to get on with my life as if almost nothing had happened ( as a result of loss of hearing in my right ear i decided that teaching kids in classrooms was too fraught, no directional hearing etc and decided to move into adult teaching, no sweat ).........i was so blase about the whole thing, and relieved to be rid of the loss of balance and exhaustion i had been experiencing that i didn't even pay much attention to the details of my treatment. Part of the reason for this was that the doctor's letters were written in illegible Hebrew ...i had one follow up mri done aftr about a year and one more after that...everything looked fine and i really left it all behind me...that was the past . This year after experiencing a further loss of hearing and a salad of symptoms too familiar to discuss, i had another mri done which showed growth of the tumour...not much growth but definitely growth ..9 mm.. that's to say it returned to original size and then some...
my doctor took a wait see position, requesting an mri in november. So........my question is really about what possibilities we have ...another zap ? is this possible/ desirable/ recommended?
i suppose it has to do with how much the patient is suffering from the symptoms, how much it interferes with her life? SO....my question is also about symptoms...lots  of what i've read here sounds familiar, including the temporary nature of some of the episodes....but i'm not reading anything about exhaustion and any kind of effect on vocal chords...is this my imagination?

[Lorenzo]

HI Elise,
Sorry to hear about your continued troubles.
A good place to ask about second treatment as far radiosurgery is concerned is the CyberKnife support group forum. The docs there are really helpful, deal with CyberKnife of course, but they also have experience with Gamma Knife. So, they might be able to answer your question.

http://www.cyberknifesupport.org/forum/default.aspx?f=1

As far as fatigue is concerned, I think we all experienced that, to some degree or other. I know I had (and still have, but less frequently) episodes of extreme fatigue, But those were muc closer to the immediate post-treatment period. Two years down the road, fatigue is not anything as severe. I would think that fatigue is something that is linked with this An, regardless if there was treatment or not. The stress alone would be a cause!
Effects on vocal cords on the other hand I haven't had. Maybe others did.
Good luck.
Ciao,
Lorenzo

[ppearl214]

Hi elise and welcome... good to see you here and sorry to hear of your issues..... I look forward to your insight and contributions here as many will be able to take away from what you can share.

Tony, to your question... it's actually a good one

Next week is my 1 yr CK anniversary, so I'm def. not an "expert" but can share that in my situation.... I did "feel" the swelling at approx 6-8 mos post CK.  They did MRI's on me at that time and found at the 8 month, it showed as "stabilized", keeping in mind the +/- 2mm of MRI's, at the time of treatment.  Had another MRI at the 10 month mark and it showed a decrease in size (def. noticable, outside the +/- 2mm for MRI's).  The "ear fullness" was my key, as well as a bit of vertigo.  Next MRI in 5 mos from now, so that will be 16 mos post treat.  I'm curious to see what it says at that point.  BTW, my MRI did show beginning stages of necrosis at the 8 mon MRI.

Terrific 64,000 dollar (how come not GBP? ) question!
Phyl

[elise]

thanks lorenzo..I went shopping on their site too, left a question for the docs...since then have found some more references to vocal chords, swallowing issues....

[Lorenzo]

I'm sure they will respond ery quickly. They usually do. Hope that site will be helpful to you.
Reagrds, Lorenzo