Hi Everyone!
I am a voice from the past. This group was so helpful in getting me through my "Great Cyberknife Adventure". I am still glad I chose Cyberknife and most of the time my AN is not even near the forefront of my thought processes. The side effects I have from the tumor and treatment, as a whole, I have adapted well to. Life goes on.
I have been getting my post MRI's on schedule and have gotten over my claustrophobia (with the help of "happy pills") and my pre-MRI fear of them.
Now for the "but..." I do have periodic flares of the symptoms. I still have periodically stronger periods of imbalance. My hearing and distortion also vacillate. Proceeding and after my Cyberknife, I had bad bouts of balance issues. The nystagmus was very annoying. The hearing issues are perhaps the strangest. One of the reasons I was diagnosed was my word recognition issues. My hearing was okay but I missed many words resulting in my diagnosing MRI. After Cyberknife it stayed fairly similar to pre-treatment. Hearing aids would just amplify the distortion so I stayed away from them. A year later, after 2 hearing tests, both confirming that my word recognition increased greatly to the point hearing aids did help the loss of hearing. I wore them a lot. NOW my word recognition has again decreased (although I have no recent hearing tests, I KNOW the distortion has returned and the hearing aids cause amplified distortion. The pre-treatment tinnitus is the same story - increasing and decreasing with hearing distortion and loss. Does anyone else have this vacillation?
Now for my really weird question and perhaps symptoms of post Cyberknife treatment. Does anyone who had Cyberknife have these following issues? 1. I have the feeling of pressure where the carcass of my tumor is. 2. I also have small spots in numerous places on my scalp that are sensitive somewhere between itching and burning. About a year after being treated I started realizing it was there and then started wondering if it had to do with my treatment. There is no physical signs of skin issues. I just am really curious about this and can't find anything like this on the internet for any other conditions. This I can live with easily, it is just so plain weird!
I am making an appointment with an AN specialist Dr. at Barrow Neurological for my annual MRI and will confer with him about these oddities. Sadly my Dr. retired.
Hoping to hear from "old" AN friends as well as some new ones who can shed light on any of this.
Take care,
Mary
PS
I may post this same message on other areas of the forum so I can get feedback on my questions. For those who see the repetition, please excuse me!
