8 months after one 30 min radiation treatment suffering daily

[InTheGarden]

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

[mwatto]

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!

[InTheGarden]

Hey thank you so so much for the reply. I will ask bout those meds. I've forgotten what normal is. 🙏

[DanFouratt]

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