Recent Posts

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51
Radiation / Radiosurgery / Re: 2 years Post CK
« Last post by greenamw on September 23, 2025, 12:33:37 PM »
Dan, that’s solid. You walked, drove, golfed, barely dizzy, textbook best-case outcome. Thanks for sharing; people need to hear the positives, not just horror stories. Fingers crossed for January.
52
Radiation / Radiosurgery / Re: 2 years Post CK
« Last post by drumfest on September 23, 2025, 12:05:47 PM »
Great to hear Dan!  Thanks for sharing.
53
Hearing Issues / Re: Lipreading: Are online courses worth the cost?
« Last post by greenamw on September 23, 2025, 02:32:45 AM »
I’m SSD since 2020 and tried a live Zoom speechreading class plus an app. The live one was worth it for feedback and varied faces, apps were ok for drilling shapes. Biggest gains came from daily practice with family, good lighting, and recording short clips to replay. For cheaper options, check city adult‑ed and HLAA chapters, I joined a couple free weekend workshops. It helps in noise, but mostly when the talker slows and faces you. For structure, I add quick phone quizzes with instant explanations. That pts mock test routine keeps me consistent.
54
Radiation / Radiosurgery / Re: 2 years Post CK
« Last post by mwatto on September 21, 2025, 01:40:51 AM »
So pleased for you Dan! We really need good feedback to stay positive! All good my side also after CK 6 years ago!
55
Radiation / Radiosurgery / Re: 2 years Post CK
« Last post by GatorMan on September 20, 2025, 01:39:19 PM »
Thanks for sharing, Dan! As someone who's only just begun this journey (diagnosed May 2025), it's reassuring to read the experiences of others and know what might be in store for me.
56
Facial Issues / Re: Help and support finding the best possible reanimation surgeon in US
« Last post by MarlaB on September 19, 2025, 03:17:02 PM »
I don't have a recommendation for a surgeon/facility, but have you checked https://facialparalysisinstitute.com/blog/the-facial-paralysis-and-bells-palsy-foundation/

Wishing you the best.

Marla B
57
Radiation / Radiosurgery / Re: 2 years Post CK
« Last post by ESH on September 16, 2025, 06:48:48 PM »
Dan, I'm thrilled to hear you are doing so well.

Ellen
58
For those in the 'watch and wait' status / Re: Tinnitus
« Last post by ESH on September 16, 2025, 06:45:23 PM »
Forgot one last point. The other thing that helps a lot is deep breathing or relaxation exercises.

Ellen
59
For those in the 'watch and wait' status / Re: Tinnitus
« Last post by ESH on September 16, 2025, 05:16:24 PM »
I don't know. My tinnitus is moderately bad but I may have little tolerance  because I dislike loud noises. It really bothers me in silence. At night, I have taken to going to sleep with music on (using a headband-type headphone), which seems to make it more tolerable. I also know that it is worse when I have not had enough sleep or have not been exercising regularly so I make sure to do those things.

I would love

Ellen
60
Radiation / Radiosurgery / 2 years Post CK
« Last post by DanFouratt on September 15, 2025, 12:28:54 PM »
Two years ago I was at UNC for my 8:30 appointment with the CK machine.  The only thing that went wrong that day was it did not happen until 10:00 (typical of all appoints at UNC). I was home by noon and BBQing that evening.  I took no medications and only had one dizzy spell that afternoon.  I felt well enough the next day to drive 2.5 hours to Charlotte to pick up a wedding gift for my son.  I might have been a little off as my wife talked me into shoe shopping at the big mall there after we picked up the gift.  So after a 4 hour walk I drove home.  No issues. I walked 18 holes of golf the two days later and the only real issue was the first swing.   I sent people running but by the end of the first hole I felt fine.

I waited 8 months for my first follow up MRI and the tumor shrank a little. My next one is not until January 2026 and I am hoping for the best. 

Other then the hearing loss and tinnitus which were both present before the procedure I have had no other side effects, even brief ones.  I share this as I want to thank the community who helped me get to and through the procedure,  Also to let people know there are great outcomes.  We hear too much about the negative.  As I tell people with 1 being worse and 10 best I scored a solid 10 with the procedure.

Thank you all,
Dan



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