Radiation consult scheduled -- now questions

[patt]

Hi to all of you --

I big thank-you to all of you that are so willing to take your time and help us that are on this journey of a million questions and fears.

I was recently diagnosed with a 2.7 cm Vestibular Schwannoma.  I now have an appointment on the 26 of this month with a Radiation Oncologist to discussed my options with radiation.

What are some important questions that I should be asking?    If this is what you did, are you glad that you made this decision or do you now regret it??   I do have loss of hearing in my ear --- that is why they did a MRI  -- I don't have any balance problems, as of yet.  I am so afraid that will be next.   Did any of you experience sudden hearing loss, but good balance   ---- then later had balance problems??

How did you feel after your radiation treatment??    Did you have the Gamma or the Cyber??

Thanks for your help  --- I need it!!!!
Patt from Minnesota

[Tumbleweed]

Patt:

Welcome to the forum. Rest assured your fears will subside as time passes.

Here is a link to a post I made a couple years ago, which provided a suggested list of questions to ask the doctor(s) during your consultation about your AN:
http://anausa.org/forum/index.php?topic=5783.0

I had CyberKnife (CK), a type of fractionated radiation treatment. It was a miraculous treatment for me. If I had to choose all over again, I would choose CK in a heartbeat. Here is a another post that compares radiation (CK and GK) to surgery (look partway down the page for my post):
http://anausa.org/forum/index.php?topic=6670.0

You are fortunate not to have any balance symptoms. There are no guarantees, but you are not likely to have balance symptoms after getting CK, should that be what you choose. Dr. Chang told me CK is not likely to cause symptoms you don't already have at the time of treatment, but it can make existing symptoms worse (albeit usually temporarily). That said, you may (or may not) lose a little more hearing on your AN side following treatment.

I initially had a very (atypically) rough period for two months following CK, but then went on to improve dramatically after six months had passed. For the first two months, I was profoundly fatigued. My balance got about 15 to 20% worse for about six months. I had one episode of hyperacusis, which resolved itself after several days. But after six months, I began to see dramatic improvement. My balance improved to where it is now subjectively about 65% better than before I was treated. I've regained 15 dB of hearing in my bass frequencies (although I also lost about that much in my midrange frequencies). My energy level has improved a lot. My tinnitus level decreased very dramatically immediately after getting CK (this was a highly unusual result, so you shouldn't necessarily expect it to happen to you).

I hope this helps you, Patt.

Best wishes,
TW

[sunfish]

I'm still in the early stages - just 3 weeks out from CK.  I noticed hearing problems last fall, and was diagnosed with mixed hearing loss - sensory-neural loss (probably from AN), and conductive or bone loss from otosclerosis or previous injury.  We didn't think too much of it until I had an episode of a couple days acute vertigo, which resulted in MRI and AN diagnosis.  My balance gradually improved from January to March.  Like Tumbleweed, I had a rocky initial period after CK, maybe due to steroids.  Seemed like CK did set me back slightly with regard to balance.  Someone else on this forum called it "floaty" feelings, or more like being in a boat on water, not spinning vertigo.

Happy to report that I'm back to pretty much 100% normal in every way at this point, no changes in hearing (for better or worse).  So far, so good - I told my husband that, if CK stops the tumor growth, they will have made a real believer out of me.  From what I've been told, there's a risk for at least several months after CK that the tumor swells and causes further symptoms, but no sign of that so far.

[ppearl214]

Hi Patt

Ok, here's a good question to ask the radio-onc, specific to your situation..... (and also for others inquiring about radio-treatments).....

How many RADS will hit surrounding structures (ie: brainstem, etc) and what potential affects of radiation hitting surrounding structures could occur?


I asked my radio-onc that at our planning meeting.... he was impressed I did my homework!

Good luck and please keep us updated as to how it goes!
Phyl