Viva, I too had was a one and done - CK at UNC. If you want to talk please call 336-264-9238.
What symptoms did you experience in the first days or weeks after treatment?
I was a lucky one I had none. The day of the procedure I went home a rested but was able to get up and BBQ that night. Only one time did I experience any issues. I stood up and know I had to sit down but that was really a passing event. I have heard of fatigue and a little brain fog happening after treatment. The next day I drove 2.5 hours one way to pick up a gift for my son. I guess I was a little effective as my wife talked me in to shoe shopping with her at the mall in Charlotte 😉. It was a nice 3+ mile walk which was good for me. I then drove home. I played golf (walking 18 holes) 96 hours after treatment. The first swing was rough but I enjoyed the day.
Which symptoms are common and expected after radiosurgery?
I have heard of fatigue and a little brain fog happening after treatment. There is also dizziness and other little things we AN warriors deal with. Some loss of energy. I am not a doctor but these appear to be more common for multi treatments then the one and done.
Which symptoms are NOT common and should trigger a call to the doctor or urgent care?
Again, I am not a doctor but I would guess anything bleeding would be a big red flag. Anything you consider abnormal would be cause. We need to be our own advocates. I was talking with someone going through a different issue. I suggest to her to find a group. I said to her the big advantage to the group you can start a quest with “Has anyone ever….” And usually get an answer quickly.
How long did it take before you started feeling normal again?
Several weeks after my tinnitus got alot worse and my head felt fuller. I called the doctor and it was written off to tumor swelling and it would pass - it did. Other then that this process was went smoothly.
Any tips for the first few weeks of recovery (fatigue, dizziness, activity level, steroids, etc.)?
First, I did not do steroids. In the discovery process steroids were prescribed to solve the problem, I did not like them at all. All the above could be present in your recovery. I had OHS six months after CK. The one thing that group talks about is listening to your body it will tell you what you can and cannot do. With CK there was little I could not do. However, recovering from OHS there was times my body said enough.
If you had serviceable hearing before treatment, were you able to preserve it long term?
That shipped sailed on me prior to treatment for me.
Also, if anyone here has dealt with two tumors at the same time (like a vestibular schwannoma plus a meningioma), hearing about your journey would be especially helpful for me.
No I only had the VS.
I’d really value hearing your experiences and anything you wish someone had told you before or after treatment.
First and you know this you are not alone and we are here to support you on your journey. I was serious if you need to talk please reach out. I had someone call from the hospital with last minute jitters. They were five time zones away from where I was at that time so my wife laughed at me but understands. MRI follow ups are open subject. Again I am not a doctor. I know doctors who want to do it every three months after radiation. With my OHS surgery getting in the way I have only done one follow up in 28 months. I have one scheduled for next month. I also do the MRI without contrast.
Thank you in advance — this forum has already helped me a lot just by reading everyone’s stories
If you have any other questions you have my phone number above, my email is Dan4att@gmail.com or this forum. I will be sure to check often over the next couple of weeks.
Good luck on your journey,
Dan
