When to have radiosurgery

[carolk]

I was diagnosed with a small (3mm) AN in Dec. 2003, as an "incidental finding" when I had an MRI for another reason. Serial MRIs at 6 months and 1 year showed "no significant growth," but my MRI this January (2006) showed that it had grown slightly, to 4x4x6mm.  I have NO symptoms in that ear (my other ear has mild hearing loss and tinnitus, go figure!) and my balance is fine.  The location--deep in the inner ear canal--makes me a poor candidate for surgery (fine with me!) and a good candidate for radiosurgery.  I met with the radiation oncologist at Duke who says it would be a good idea to treat it while it's this small, to use less radiation.  He suggests one, single treatment.  However since I have no symptoms (and am hoping that maybe it might stop growing?) I'd like to wait a while longer before submitting to a treatment that could have negative consequences.  Any thoughts on whether it's better to treat it now or if I wouldn't really lose anything by waiting another year or two would be of great help.  And other advice would be GREATLY appreciated!

[ppearl214]

Hi Carol and welcome.

I'm sorry to hear you are having continued issues but glad that things have been narrowed down between micro-surgery vs. radio-surgery.

I'm not sure if you are located in the Duke area or elsewhere (or if you can or are willing to travel), but there are certainly many radio-surgery options to investigate. Like you, my AN is located deep in the IAC (left) and like you, I've ruled (and have been ruled) out microsurgery, so I am weighing all radio surgery options.  My hope is that your dr can advise, based on your previous treatment, what kind of radiosurgery would be best. 

Novalis (conventional radio-therapy)
Cyberknife
GammaKnife
Proton

Please research any and all options. Please discuss with NUMEROUS professionals (neurosurgeons, radio-oncologist, your primary care physician, etc).  I have learned this past month that no question is too stupid, that I can ask all the questions I need to and remind myself that it's my head -- my brain -- not their's.  Do any and all research you can.  Many great posts on this site, great suggestions, other websites as well.

Please be well and know that we are ALL here for you.

Phyllis

[carolk]

thanks Phyllis,
    I am quite confused by the different types of radiosurgery and radio therapy, but am just starting my research and plan to send my MRIs around for second opinions about radiation treatments.  So far, I've heard the U Va, U of Pittsburgh and Hopkins are the top places.  Any other thoughts?. . .This board is VERY helpful and I appreciate your advice and good wishes.
   all best,
   Carol

[ppearl214]

HI Carol,

I'm not as familiar as others here about the different locations that offer the different radiation treatments. I can only (truly) answer from a Boston standpoint and am very lucky to live in a medical mecca.

I know Mark may have better insight into locations but I know this much:

I have made my final decision for Cyberknife to be performed at Beth Israel Hospital in Boston.  I'm not sure about other CK treatments on the East Coast and maybe the Cyberknife Support board can better advise.

I have heard of treatments at GK UVA and Duke, Wake Forest.  I know Proton is done at Mass General Hospital and Loma Linda in CA.  I only am familiar with Novalis (conventional radio-"therapy") at Brigham/Woman's in Boston but sure that there are other locations as well.

My thought, besides reading posts here, is to do Google Searches by radio-treatment type for your area. (ie: Radiosurgery - NC or GammaKnife Virginia or etc). Other posts on this board should be able to provide great info as well (as it certainly helped me). Just grab a cup of tea/coffee, sit back, let the mouse point and click and start reading.  REALLY helped me out when I did the same!

Hope any of this helps.. and if it doesn't, that's ok too.  Just know that you are not alone.

Phyl

[carolk]

Thanks Phyllis,
  I'm in the process of gathering my medical records to send out for opinions.  When are you scheduled for your procedure?  I'll be sending you "good vibrations" and will be most interested to know how everything goes!
   all best,
   Carol

[ppearl214]

Scheduled for week of April 3 (5 consecutive days that week). Carol, I have faith in you to research this carefully... sounds like you are already in mode and we're here for you!

..and thanks for the wishes. I KNOW it's going to be fine!

Phyl

[Labott]

Hi:
  I've got a 1.0 x 0.5 cm neuroma deep in the right ear canal.  Like you, the only microsurgical option is translab.  After consulting two ENTs and a radiation oncologist, I opted for stereotactic radiosurgery.  The procedure was performed on Feb 2nd at Emory University Hospital.  I went in at 6:15 AM, had the halo installed by 7:15 AM, took 16 Gy from the LINAC at 12:30 PM and was out of the hospital by 1:00 PM.  I walked around the block in my neighborhood in the early evening.  Facial swelling began in 24 hrs and lasted about five days.  Hearing on my right side was "delayed", and I experienced echos for about two weeks.  This has since subsided and my hearing and tinnitus is the same as before the procedure.  Vertigo has increased in frequency but not in severity.  The follow-up MRI on March 15th showed no change in tumor dimensions and, more importantly, no collateral damage to surrounding tissue.  I missed only 1.5 days of work and have had no interruption in all activities (tennis, sculpting, etc.)!  In short, the process has gone incredibly smoothly. Hopefully this will help you in deciding when to have your procedure done. -Labott

[Larry]

Labott,

Thats great and welcome to our very exclusive club - by invitation only and you are a very welcome member.
we love to hear positive stories and I am especially pleased as, when i decide to have my radiation treatment, it will be through a Linac as well.

Laz

[ppearl214]

Great news Labott!  Emory is a wonderful medical institution (top ranked educational hospital in GA) and I know you were in great hands. Wishing you continued success with the treatment.

Phyl