So, anyone with some answers as to what to do in the case of radiation treatment causing more severe symptoms?
I'll take this one, my Pooter!
![Kiss :-*](https://www.anausa.org/smf/Smileys/classic/kiss.gif)
Hey Carol,
thanks for elaborating on the situation... most helpful. Now, granted..... there is no growth, I take that as fabulous news!
![Smiley :)](https://www.anausa.org/smf/Smileys/classic/smiley.gif)
Please remember the ultimate goal of radiation on AN is to stunt its growth... not to shrink it, etc. Yes, there may be minimal shrinkage (pls keep in mind that head MRI's have a total margin of error of +/-2mm and no 2 docs read/measure the same as the other) but again, not the goal. If you had your GK a fews years back and there is no enhanced growth, then that is great news! Honestly, to me, sounds like the GK is doing what it is suppose to do.
As for radiation potential side affects/symptoms... out of respect to your GK doc that told you there is no side affects with radiation... I beg to differ. I had done VERY extensive research on radio before my CK treatment almost 3 yrs ago, which included speaking to many radio patients on this site, having multiple radio appts with local radiation teams (of all forms of radio treatments) as well as quizzing the docs on the CK Patient Support board (they volunteer their time -- no stipends -- to answer questions from patients about all forms of radio treatments.... and they also practice all forms, including GK and CK). Since the AN is on the vestibular nerve... right away, potential issues... then, toss in a round of radiation... sure, more aggrevation around the nerve... then throw in some potential post radio swelling... sure enough, another possibility, etc. Balance issues... vertigo.... hearing loss..... enhanced tinnitus... you betcha. Any of these are potential after affects of radiation (and microsurgical, btw). No one can guarantee that these things won't happen... and we can only hope they don't.
Carol, I may be out of line and shame on me if I am... but, if you were to say to me "Phyl, if you were in my shoes....."... I would sit back, do a bit more research and quizzing others that are in our shoes and not jump so quickly into surgery. Reason I say this is... there is a wealth of info here (and around) from folks that have or are experiencing some of the same issues as you.. and we have learned that its all part of the "AN Journey" we don't like. Many have learned ways to adapt to things and even have shared "remedies" here on how to conquer some of the situations. As you can see from the forum home page, much of what you note has their own sections here (ie: Balance Forum, etc). There are many discussions here about Fatigue, etc. If you need guidance to help you find some of this info... myself, the other Mods or others here are more than happy to find specific info for you (try the "Search" option at the top of the discussion forum home page for a particular subject. ex. post treatment fatigue... you will see many discussions about it).
I'm also going to see if Sue (Vancouver Sue) will chime in. She is approx your age, had GK approx 3 yrs ago (right after I had my treatment) and may be able to share on her experiences with her... .
"Oh, SUUUUUEEEEEEEEE!!!!!!*... xoxoxoxoxo
So, I may be out of line, but I hope this helps... and we are here to help as best as we can.
Carol, hang in there.... we're cheering you on and will help any way we can.
Phyl
(btw, won't be there for the 7th, which is killing me since I did get to meet up with CindyJ last summer while there.. please give her a BIG hug for me! Next trip to ATL to see Mom and sisters, will let you know... should be soon enough. I'm due to see mom).