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51
Physicians / Re: Kaiser Redwood City vs. Stanford and UCSF
« Last post by DanFouratt on October 29, 2024, 03:48:50 pm »
To add to what Derby said. I wore a few people out (okay 8 doctors, 4 each radiation and surgery).  The best single bit of advice I got was  "No decision is a bad decision, make the decision you are comfortable with and move forward, do not second guess yourself."                 
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Post-Treatment / Re: 2 years and the tumor has calmed down
« Last post by DanFouratt on October 29, 2024, 03:44:05 pm »
Derby,

I am glad it is stable after a year. 

Dan
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Post-Treatment / Re: 2 years and the tumor has calmed down
« Last post by Derby on October 29, 2024, 12:39:20 am »
Thank you, Dan. I'm ok with all the side effects of GK and the tumor. The one thing I'm hoping to avoid is surgery. I can handle the rest but am scared of surgery.  I'm feeling hopeful now. Depression is lifting.
That's good news. I'm about a year out from my dx, and I'm glad I chose SRS over surgery as well.
54
Physicians / Re: Kaiser Redwood City vs. Stanford and UCSF
« Last post by Derby on October 29, 2024, 12:06:27 am »
I spoke with Dr. Xu and Dr. Sheridan at KP Redwood City, and I liked them, but my VS was smaller than yours so I ultimately opted for SRS. (I have a thread in the Radiosurgery topic, if you are interested.)

I know this isn't really helpful to your immediate situation, but the best you can do is get consults at UCSF & Stanford, as well as KP, then make a decision based on your comfort level. There is no definitive "This one is the best" answer, so don't do like so many patients do and torture yourself about it.

Best of luck with your decision and treatment! Please come back and let us know.
55
Physicians / Re: Kaiser Redwood City vs. Stanford and UCSF
« Last post by carolinafreire on October 28, 2024, 11:00:02 am »
Thanks for the recommendation. I was referred to KP Redwood City Medical Center. I wasn't aware they also have ANA doctors and neurosurgeons at the Sacramento Center. I'll take a look. Does anyone else have experience or info to share about Stanford vs. UCSF vs. Kaiser?
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Post-Treatment / Re: 2 years and the tumor has calmed down
« Last post by DanFouratt on October 25, 2024, 03:43:36 pm »
UAA,  I agree with you on surgery. I am glad I went radiation. Living with SSD and Tinnitus is something I can mange.

Take Care,

Dan
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I am learning to live with SSD (left ear).  This past week my sister was in town SSD (Right ear) and my BIL poor hearing both ears.  We had a great time laughing as each person took their assign space so we could all hear.  My wife, no hearing problems, laughed the most.  The one hearing improvement I have looked in to was the Cochlear implant as it is reported to help Tinnitus.
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Post-Treatment / Re: 2 years and the tumor has calmed down
« Last post by DanFouratt on October 24, 2024, 08:16:21 am »
Congrats on your status. My is stay that way.
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Post-Treatment / Re: 2 years and the tumor has calmed down
« Last post by mwatto on October 23, 2024, 10:35:23 pm »
Yes I had two cystic components- which totally disappeared after treatment and still gone year 5.  I think I also have some facial nerve aspect though re this stabbing ear pain I get on an almost daily basis. Super annoying as it wakes me up. Unfortunately, the AN releases toxic proteins so I guess we will have symptoms on and off as it causes inflammation and irritates nerves. I try and work on inflammation on a daily basis and stay healthy through diet, sleep, walking and swimming, low stress, some supplements .
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I am SSD from my AN and have tried 4 different sets of Bi-Cros hearing aids with little to no benefit, and returned all of them. (I also tried the Adhear and an Oticon mini on a softband-- no luck with either, so have suspended my attempts at a BAHA for the time being.) It's interesting to read the other responses here, as I thought I was an outlier at not liking the BiCros. I also have tinnitus that's no walk in the park. Does anyone here have info on the latest, greatest Phonak "Infinio Sphere?" The literature and one review claim it has improved capability to reduce background noise so you can hear the person speaking. This would change my life if it actually works. It only came out in August 2024, and the last time I saw an audiologist was the month prior. I look forward to hearing (haha!) other's experiences and ideas.
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