Author Topic: My AN Story – Sydney to Stanford CK  (Read 19587 times)

Gtmochi

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Re: My AN Story – Sydney to Stanford CK
« Reply #60 on: March 20, 2019, 09:51:54 am »
It’s so lovely to hear things are stable for you, Stella!! Though the pressure is still there, that’s great news that your optic nerve is slightly better. It’s also terrific that your neurosurgeon says things look about the same as far as your AN. Good news all around!  I bet time and healthy living are huge in continuing to help, and also hope that things continue to improve and resolve.

Sending you positive vibes!

Jessica
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

ANSydney

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Re: My AN Story – Sydney to Stanford CK
« Reply #61 on: March 20, 2019, 04:28:05 pm »
Stella, good to hear that things are stable. I hope the increased intracranial pressure can be addressed. Has you neurosurgeon made any suggestion about what could be done to help?

notaclone13

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Re: My AN Story – Sydney to Stanford CK
« Reply #62 on: March 20, 2019, 09:30:19 pm »
Stella, thanks for posting your good news. We all share your relief in knowing things are stable. Every mri is preceded a period of by anxiety and worry. It is such a blessing to hear that the tumor remains the same or better yet is shrinking.

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #63 on: March 21, 2019, 01:47:29 am »
Thanks for the positivity Jessica, ANSydney & notaclone13 !!!! yes definitely a relief :D

@ANSydney -- as always an excellent question; no i have not had suggestions from the medical establishment about reducing the increased CSF pressure -- so far i've reduced coffee, increased exercise and try to keep stress to a minimum.

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ===> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #64 on: June 08, 2020, 12:48:17 am »
Here is the latest from me at (almost) 5 years post CK:

Tumor is stable in size and appearance , slightly smaller than when I started this ride  ;D. The good news is the neurosurgeon noticed more distinct CSF flow throughout my brain, the tumor looked visibly smaller & the great news is he doesn't want to see me for 2 years!! 

After 13 rounds in the MRI machine, I am very happy to wait 2 years until the next one.

The ophthalmologist is fine with my papillodema (optic nerve swell) being stable too, so I can wait 1 year (instead of 6mths) for the next check on that one :D. I'm getting hearing checked again in August - hopefully hearing loss has peaked.

Overall I feel pretty good. The tinnitus plays up to remind me when I'm over-stressed, the left side of my facial numbness is still there and the hearing loss is an issue when in crowded places (better with my hearing aid on).

My latest health improvement strategies include intermittent fasting and the wonderful practice of Yin Yoga -- really helps instill the calm.

wishing you much thanks for supporting this life changing journey,
be well during these (additionally) trying times

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ===> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

notaclone13

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Re: My AN Story – Sydney to Stanford CK
« Reply #65 on: June 08, 2020, 07:56:01 am »
Stella, I am so very happy for you. Your story is inspirational to all of us.

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #66 on: June 08, 2020, 04:11:59 pm »
Hello notaclone13, thank you !! , for your kind support  :D, it's made a big difference to my journey to have this forum to vent, document, learn and receive kind words, take good care, Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ===> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

 


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