I have had very bad stabbing ear pain AN right side for over 6 years. Was in fact the only symptom I presented with and I still get it. It also wakes me up during the night. The only thing that helps me is medical CBD/CBN (Humacology brand). Nothing else makes any difference. My specialists (I have a radiation oncologist and a neurosurgeon as a second opinion) say stick with this then. It was also suggested I have TMJ teeth clenching maybe caused by the AN so I do sometimes wear a mouth guard at night which I hate but it does help. Its very distressing as the pain comes out the blue and often when I am sleeping. I do work on inflammation, vagus nerve stimulation, some targetted supps like magnesium, and I do neck and eye exercises, gentle face and neck massage with a roller. A gold gel pack on neck before bed. All these help somewhat. I can tell you that it has not got worse but it also has not improved over the years. If I lie on that side it def aggravates it so maybe its pressure or circulatory like a blood vessel impinging. I have had the trigeminal and facial nerve examined in my MRIs but there was nothing going on and my AN continues to shrink. The pain is real and I empathise with you!

Stella, Thanks for sharing the great news. Reducing MRIs is something I can only hope for today, but you gave me something to look forward to and ask about. . Glad everything is well.

Dan

Stella I am so very happy for you! My goodness what great news!! It really gives me hope! I was told I have to have annual MRIs for rest of life which is a bummer. My specialist told me re the initial size of mine and as the treatment was fractionated. My friend does not have to because she only had one treament and hers was small. I really dread them. I guess only good thing is I get to see how my ageing brain doing.

This slow response is common at big centers like UCSF and Stanford. The best way is to call first thing when the clinic opens and be clear and brief. If your daughter has a nurse navigator or social worker, try contacting them directly

*** Latest update at (almost) 10 YEARS post CK***

My results from my MRI for 2025 (last one was in 2022), the good news is I can now go 5 years till the next one - that's a win!

There has been further reduction in tumor size measuring 2.1 x 2.0cm compared to my 2022 results (2.3 x 2.2cm).

Hearing:  Compared to previous assessment from 2022, further hearing loss has progressed. I'd like to find a suitable hearing aid that may help. I'm on a research mission to find one.
For some reason the newer models I was shown were bulkier than my current one and didn't really improve things much, then I was told I would need to wear one on both sides, which also didn't not improve things by much. Anyhow most days I'm working from home, so it doesn't affect me much, but when I'm out & about I'd like to be able to hear better from the left.

Overall, I am going well! Yoga & Pilates are my go-to for stress reduction


wishing you all wellness on the healing path,

Stella