Radiotherapy in Taiwan

[Taiwan Jesse]

Hello everyone. I'm new to this forum, and wanted to express my thanks to the association, and describe my experience with AN.

I was diagnosed with a 3cm AN after experiencing clicking sounds in my right (affected ear) for about a month. Everyone I consulted suggested using Fractionated Stereotactic Surgery as it would be safer and the success rate was good. As I'm a teacher, I wanted to avoid damaging my face and especially wanted to preserve my hearing.

I took 29 treatments over a 6-week period and a month later started to experience many of the side effects I have read about on this forum: nausea, dizziness, double-vision and fatigue. This lasted about a month. Now, 6 months after the treatment has ended, I feel okay. However, sometimes I get dizzy when I exercise and my tinnitus has become a bit worse over the last several months.

The MRI which I took a month ago shows swelling and according to radiologists this is due to normal post-radiation edema. So, while I can't be certain that FSR has solved my AN problem yet, I do feel optimistic that things will get better. 

Thanks! Appreciate any comments or advice.

[ppearl214]

Hi Jesse and welcome.

Well, I am 5-1/2 yrs post radiation (Cyberknife) and I can share that what you have/are enduring is not uncommon by others that have had radiation on their AN's.  Some report minimal effects.... some report many.... "individual results may vary."  I can share, from my own personal experience, that I had off and on issues up to (and slightly beyond) the 2 yrs post-radiation anniversary.  What you describe can be attributed to post-radiation edema (as your dr noted) as many have reported here (myself included) the same.

The "waiting game" can be difficult when one chooses radiation as a treatment choice for AN's. Suggestion is to keep your radiation treatment team updated with any enhanced changes you may experience so they can monitor and possibly prescribe medications as needed to help make sure your road to wellness is a good one.

Welcome to being a "postie toastie" (as we lovingly call it here.... post-treatment, had our tumors "toasted" with radiation) and please keep us updated on your progress. We are here to help!

Phyl

[Jim Scott]

Hello and welcome, Jesse ~ thanks for posting. 

In 2006 I underwent 'de-bulking' surgery for a recently-diagnosed 4.5 cm AN, reducing it about 2 cm and, in effect, 'thinning it out' and making it amenable to the destructive effects of radiation - in my case, FSR.  I received a total of 27gy over 26 sessions of approximately 45 minutes apiece.  I was fortunate to not have experienced any real surgical complications e.g. headaches, facial immobility.  The radiation was also relatively uneventful with no side effects at the time of the administration of the radiation or in the following weeks and months.

Post-radiation swelling is typical.  I experienced this at my six-month post-radiation MRI. At my one-year MRI the swelling has abated.  At my two-year post-radiation MRI the remaining tumor showed the beginnings of necrosis and some minor shrinkage.  I have not had an MRI since then but I have absolutely no AN-related symptoms and my balance, while not perfect by any means, is quite serviceable.  I'm confident that you're likely to have a similar post-FSR experience.  Please keep us updated.  Thanks.

Jim   

[Taiwan Jesse]

Here's an update my situation here in Taiwan. I recently had an MRI which marked the 9th month since completing FSR. There's some good news and bad news. First, the tumor shows signs of weakening as the contrast is darker. There's been no shrinkage but the doctor seems to think the tumor is no longer 'viable' (his term).  On the other hand, a small cyst has formed next to the tumor. The doctors I have told me not to be too concerned, but it's definitely something that needs to be kept an eye on.
My symptons continue to be about the same as the last time I wrote- I still experience some dizziness, and the tinnitus is still there.