Cyber Knife treatment in 2016 When will the pain and tumor go away?

[MG]

Hi Everyone,

   I haven't been on the forum in a very long time. I am getting frustrated though. I had CK treatment in June of 2016 and I am still living with pressure pain in and around my ear. It got so bad a month ago that I had to go on steroids. It seemed to help. I have had my latest MRI checked and it is still touching my brainstem and has changed slightly in measurement by increasing but the doctor says it may just be my head was slightly turned a bit while in the tube. (MRI) Not to worry he said. My biggest complaint is my exhaustion. The mornings are fine with a good nights sleep but by afternoon I am so tired I have to lay down at least 3 times a day. I have had blood tests and my labs are fine. Is anyone else exhausted like this after three years??
Thank you,
 MG

[jami]

Hi MG,

Sorry to hear about your frustration, the pressure and pain. I believe that CK keeps the tumor from growing, and in some cases it will shrink.  I suspect the doctor is not concerned because the tumor is not noticeably growing (there is a margin of error for MRIs).

Your exhaustion is how I was when i was first diagnosed. So tired, could feel my brain in my head (pressure) a few times / day, and was struggling cognitively. Due to the size/placement of the tumor, we selected surgery last August. (Just had CK yesterday, however, as the remaining piece of tumor got a bit larger). THe most elusive part of this experience are these symptoms that people cant see, and it never seems that anyone really understands how much of a struggle they are.

It may be time to discuss options with your current doctor. S/he could discuss the trade offs if you take a surgical route, as well as set expectations about the tumor shrinking.

Many positive wishes!

Jami

[MG]

 Hi Jami,
 I appreciate you replying to my post. I guess I will have to do some thinking about my situation.
I wish you the best also.

Thank you.
   MG