Intheagarden,

Sorry to hear you are suffering.  I believe Michelle is right, the treatment is doing what it was intended to do.  My symptoms were worse after CK.  I was fortunate enough that this lased only two months.  The initial swelling of the tumor may last different time frames.  A follow up MRI at six months is not uncommon after CK.  You might want to consider this to see if the tumor swelled.

Good Luck on your journey,
Dan

Hi I feel for you- I had and still have nerve pain on that side after CK. I can tell you to watch some of the videos in the webinar library because it sounds like the good news is your AN is responding (maybe swelling a little) and in fact thats a good sign. For dizziness I read somewhere that even 1 mg diazepam might help (read on it). It will get better - right now the treatment is doing what it is supposed to do. If you are very worried have another MRI though I would wait - it can take a year or so to settle down. Calming supps like palmitoylethanomide, medical CBD, even magnesium helped me. Oh and good sleep!

Great to hear that you are doing well and that AN is not the center focus of life anymore.   That is probably the best news people can hear.  I know before my surgery, the tumor was the main focus of everything in life.   I am one year post-op and it is not nearly as much on my mind as it used to be.   Like you have said, every time something does come up the first thought is, is that tumor related or just something else like normal aging.   People at the beginning of this journey need to hear from people who are past this and moving on with life so they can know there is life after AN.  And it can still be a good life.

Hello
I am new to the group. I've already learned a lot and unfortunately confirmed my greatest fears. Which is the neural oncologists and other like doctors involved in radiating patients offer very little if any actual post treatment possibilities as far as issues go. Mine said a headache for a day or two and a 2% or less chance of cancer down the road but failed to say anything about what AI says which is 30% of people can get significant problems. Mine began quickly with dizziness and headaches and tinnitus and then after a month tonight is joined and then after two more months at about the 3-month point I learned a difference between dizziness and severe balance problems. At 6 months the balance problems became much worse. Now I am staggering. I've had to quit two jobs and enter full retirement at 62. I've had the steroid treatments. I've gotten a while this is rare but we do see it stuff. I went to the head of neurosurgery at NYU in Manhattan as a second opinion he said unfortunately this can happen and there's no telling whether it's going to be another month or another year. I guess I'm just looking for some Hope from someone. I had none of these problems before. I mean I would get headaches and I had a concussion 5 years ago so dizziness was in my wheelhouse like when I had covid it was headaches and dizziness so I'm vulnerable. But when I say dearly for the last 8 months, balance headaches tinnitus dizziness all of it and now anxiety and depression. Is anybody had these problems daily and is there any hope? Thank you

Thanks so much Phyllis!! I am so pleased to hear how well you are going. Very reassuring!