Author Topic: Also back home from CK at Stanford  (Read 1902 times)

NE Farmwife

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Also back home from CK at Stanford
« on: January 20, 2009, 05:40:02 pm »
It was wonderful to meet another couple from out of state while we were at Stanford.  We enjoyed visiting with Tisha and her husband while we were there and knowing that someone else was going through the same experiences at the same time was helpful.

I too, had a very positive experience with CK at Stanford.  Everyone we had contact with was very nice and very accommodating.  Having the mask made and using it for CK on the three treat,emt days went very well.  When they first put it on, it seemed a little tight but once you took a minute to relax, it wasn't a problem at all and having a little loose skin at my age was probably helpful as well.  LOL  I would highly recommend the procedure to anyone from my experience at this point. 

We also had a wonderful time seeing the sights in San Francisco!  We stayed in Palo Alto but we spent four of our days in San Francisco--scheduling touring, shopping,riding Segways in the park, etc., around my appointments.  The weather was absolutely perfect!  San Francisco had record highs on several days.  We rented a car so we were able to come and go as we needed to.  We flew into the San Jose Airport (about 20 minutes away).  It was very small and easy to get around. 

I would be glad to answer any questions about our experiences if anyone has any questions.  You can ask them on here or PM me.  I appreciate all of the reporting on experiences and outcomes that have been available on this forum.  The information has been invaluable in helping me make my treatment decision.  When people ask me how I found out about CK and Stanford, I tell them about this website and how helpful it has been.  They give me kind of a funny look like how could you trust information on the internet and I tell them that this is where I found the most reliable information from actual patients who have been through it. 

A big thank you to all of you who consistently post your experiences and provide support all of us that come here seeking answers!

Kristi
Diagnosed 11/11/2008   2.2 cm
CK at Stanford 01/12/2008
Facial numbness, hearing loss, lack of taste and tinnitis

suboo73

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Re: Also back home from CK at Stanford
« Reply #1 on: January 21, 2009, 06:00:28 am »
Hi Kristi! 

Congrats on being post-treatment!  (You must feel great, having crossed that bridge!)
And thank you so much for the CK/Stanford update.
Although i am in W & W mode, i am very interested in following your progress (and Tisha's) over the coming months, as i would still consider CK in the future if necessary.

Please continue to send us updates as you go along - your experiences are very valuable to those here, and those yet to come.

Take care and enjoy the day!
Sue



suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

ppearl214

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Re: Also back home from CK at Stanford
« Reply #2 on: January 21, 2009, 07:14:24 am »
Kristi,

allow me to congratulate you for being a "toastie-postie" :)  Sounds like Stanford has been quite busy with you all out there being treated and hoping Pier 39 (one of my fave places) survived you all being out there! :)   Please remember to take time for yourself and know that I'm cheering you on... onward and upward to continued wellness!

Congrats!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

sgerrard

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Re: Also back home from CK at Stanford
« Reply #3 on: January 21, 2009, 09:57:15 am »
I tell them that this is where I found the most reliable information from actual patients who have been through it.

And you just added some more good information. :)

Thanks for the nice report, this kind of description really is useful to others trying to imagine what it is like. It sounds like it went well - Stanford seems to be pretty consistent about doing a good job. Take care, you may have a bump or two along the way, but treatment is behind you - you are a postie now.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.