Hello, I am new to the forum but have been reading the discussion posts and thank everyone for their insights. Thank you all for sharing!
In 2020 I was diagnosed with a small left side AN which we did a "watch and see." Eventually it slowly grew to 1.4 x .83 x 6 cm (14 x 8.3 x 6 mm). So, we decided on CK which I did in January 2022. 3 -20-minute sessions. No immediate side effects. But then about 3 months later started feeling a little lightheaded at times (a "1" on a scale from 1-10.). I went to the ENT/Neuro who was my doc, and he had no idea why, so he gave me a small rx for diazepam which I barely took. Then, with no other side effects for the next 3 months, in July (about 6-7 months post CK), I had my first left side hemifacial spasm which lasted minutes. I went immediately to my same ENT/Neuro who did the CK and he had "no idea" what would cause that because he never heard of these symptoms so long after CK treatment. I had a previous history of Bell's Palsy, so he treated me with Valtrex and Prednisone low dose. I also coincidentally got Covid for the first time that same day. Needless to say, no relief. I was worried because he had said he never heard of such a delay in symptoms before. I thought I had nerve damage now!
I am now 10 weeks after that first spasm. At first, they were occurring just 1-4/day. Now I am at 8-12 times/day. They vary in strength and duration. More so in the mornings when my face isn't "warmed up". They can start from a yawn or a simple laugh. When it happens, I can feel a lot of pressure buildup in my head on the side of the AN. And tinnitus gets very loud.
I have since switched doctors. We did an MRI a few weeks ago which the Radiologist says show the tumor a little smaller and a bit blacker. But the doctor didn't read the report but instead read the films and said he sees the tumor swollen and believes it is touching the nerve which is causing the spasms. He told me not to think outside the box as he is sure what is causing the spasms. So now I am on my second week of Dexamethasone 2mg 3/day which hasn't seemed to help at all yet (still same number of spasms (10-12). He wants me on it for 30 days.
Questions for anyone who has had similar experience: Did the steroids eventually help (side effects of no sleep aren't wonderful!)? Anything else I can do to reduce the swelling of the tumor as a result of the radiation? Any other Rx to suggest decreasing the frequency of the spasms? Did your spasms eventually go away and any suggestion on a time frame?
Thank you for reading and responding! I will keep this post update for all to be able to review as the journey continues....