My AN Story %u2013 Sydney to Stanford CK

[Gtmochi]

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

[ANSydney]

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]

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]

Thanks for the positivity Jessica, ANSydney & notaclone13 !!!! yes definitely a relief

@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

[SP]

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  . 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 . 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

[notaclone13]

Stella, I am so very happy for you. Your story is inspirational to all of us.

[SP]

Hello notaclone13, thank you !! , for your kind support  , 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

[SP]

*** Latest update from me at (almost) 7 years post CK***

I just got my results from my MRI for 2022 (last one was in 2020), the good news is I can now go 3 years till the next one 

BRAIN
This is the first time seeing a significant reduction in size.

There has been good reduction in tumor size measuring 2.3 x 2.2cm compared to my 2020 results (2.9 x 2.9cm).
"It exerts less mass effect on the brachium pontis and previous distortion of the fourth ventricle has essentially resolved"

EYES
The ophthalmologist is fine with my papillodema (optic nerve swell) being reduced too -- looks like normal range now, so I can wait 2 years for the next check on that one 

EARS
Compared to previous assessment from 2020, hearing has remained stable bilaterally.
ie I still need the hearing aid when out and about. Don't use it much when I'm working from home with a headset on.

Overall I'm doing OK, I tend to live a much more stress-free lifestyle where I can, Yoga and daily walking definitely help with that.

As always, wishing you my heartfelt thanks for your support on this forum, it has made all the difference to me.

wishing you well on the healing path,

Stella

[donjehle]

Thanks for sharing your wonderful report, Stella!

It is so encouraging to hear.  Stories like yours give me a lot of hope!

[mwatto]

Stella
I am really happy to read you update!! Fantastic. So pleased all is well! xx

[mwatto]

 

[SP]

Thank you donjehle & Michele!!
It's relieving to get positive news that's for sure.
Be well,
Stella

[mwatto]

Hey Stella am going really well now- no more nerve pain! I started on LDN now and it is helping me a lot. I think after the vaccine I was in a hyper inflammatory state- it was toxic for me. However I am now recovered at 8 months.

[notaclone13]

So happy for you Stella! Your AN journey has not been an easy one so it’s encouraging to hear your good news. I have an MRI scheduled for next week, approximately 14 months after radiation treatment. I’m having hemifacial spasms daily so I’m very anxious about what is going on inside this noggin of mine.

[SP]

@Michele-- it took a long while, I'm so glad to hear you are doing much better.

@notaclone13-- thanks you!!! I hope your MRI goes really well & facial spasms ease soon. I didn't have those, but had many other weird symptoms for a few years post CK, then they eased off -- hopefully the spasms are transient.

my best,
Stella