My AN Story %u2013 Sydney to Stanford CK

[PaulW]

Temporary solutions for hydrocephalus
http://www.sophysa.com/en/page/what-are-the-treatments-to-control-hydrocephalus

[SP]

Hi Elsy,

Congratulations on completing your treatment !!

Yes indeed, my tasting definitely was affected; so sometimes the seasoning in my cooking was/is a little off -usually not enough ; so its easy to add salt & pepper etc at the table... the good news is its getting better all the time, so it's possible that it is a temporary thing for you too..


Stella

[SP]

Thanks Paul!

That's a great link, haven't seen that before...though both of these options don't sound all that appealing.

Do you have any tips on dealing with Tinnutus? it seems to be getting louder in the AN ear (along with a decrease in my hearing) ; mostly bothersome at night when I'm trying to sleep.

thanks

Stella

[Elsy]

Hi Stella!

That's a comfort!
Thank you and I hope your tinnitus gets less noticeable as all the literature suggests.

All my best to everyone on this very helpful site,
Elsy

[mcrue]

Speaking for myself and my severe tinnitus (formerly suicidal tinnitus at the beginning), I use the WIDEX hearing aid with the "ZEN features".

The WIDEX hearing aid has musical tones that it puts in your ear to retrain your brain, as well as a  "buzzer/masker/swooshing sound" to straight up block the tinnitus. 

And of course it also is an excellent stand-alone hearing aid.

I mainly use the stand-alone hearing aid feature which I set very high, or I find myself using the masker.

I rarely even use the ZEN musical tones.

For sleep issues, speaking for myself, I use the lowest possible dose of Xanax (0.25) on an AS Needed basis, which works wonders.

Best wishes.

[SP]

Thanks mcrue!

Yes at the last audio gram I did , I had a discussion with the audiologist regarding a hearing aid "that's also good for tinnitus" ... although i haven't pursued the hearing aid option as yet , I think it may be useful for me.
I was mainly holding off until things "stabilized"; which I'm told could be 2-3 years (I'm at 1 year post CK now)... I'll mention this one to him at my next appointment - thanks again.

Hope you're going well

Stella

[mcrue]

Thank you,

There are many microsurgeons who won't recommend radiation for tumors over 1cm.  It's great to see several AN patients presenting with 2.5 cm, 3.0 cm, and 3.2 cm tumors who have opted for successful radiation treatment with world-renowned radiosurgeons.
Each case is unique, but this just shows you should get as many qualified opinions from as many top surgeons as possible before making the final decision....and then follow your instincts.

[SP]

I thought I would post an update on the 12 months post CK results from Stanford & local tests. Ok so overall I am doing very well,  in summary:

From Stanford:
The acoustic neuroma lesion appears slightly smaller on the scan.
The acoustic neuroma measures 31 mm x 29 mm x 28 mm.  (originally Size: 3.2 x 2.5 x 3.0 cm )
No change in the cystic component, no change in ventricle size, and the necrosis is still present in the center of the tumor, and is unchanged.  Dr Chang has no concerns at this point. Good news!

Local Tests:
Hearing in LHS declined (was all good before CK)-- they wont put a % loss here, but chatting in groups/ cafes is challenging.
Enlarged 4th ventricles that appeared in Feb 2016 (6 months post CK) -still there- but stable.
Opthamologist results-- eye pressure etc at the high end but stable - no better, no worse - a good sign as things are stable.

My observations:
Tinnitus about the same as at the start (or maybe I'm just used to it - except at night).
Facial Numbness about the same (or maybe I'm just used to that too).
Balance a bit wonky sometimes (was not an issue before CK).
Sleeping better (less stressed out about what to do, as it's done).

Next Steps:
next MRI is due Feb 2017
I'm aiming to stay as healthy and as positive as possible. I've also been making some life changes to simplify my life and be grateful for the good things I get to experience every day.

Cheers,
Stella

[mcrue]

Fantastic Stella. That is most excellent news. Your tumor is stable/shrinking with necrosis. So far so good!

[lilith]

Great news Stella. Congratulations!

Lilith

[SP]

Thanks kindly Mcrue & Lilith !

[ANSydney]

Stella,

I'm also in Sydney and leaning towards radiosurgery. Once Stanford agreed to treat your tumour, I would have thought that the Australian institutes would have also agreed to to do it.

Also, is it expensive to get CK done at Stanford (probably not covered by Medicare or insurance).

[SP]

Hi AN Sydney,

To address your first comment -- not a chance -- my take on it is: since CK treatment for me was outside their realm of expertise they would not endorse it for my case.

Your second comment ---definitely not covered by Medicare or my private health fund insurance --- very, very expensive -- happy to discuss with you on this, you can email me via Private Message.

BTW -- we have GK at Macquarie and CK in Perth -- it may be worth investigating these first.

Stella

[SP]

OK so here's the latest from me @ 24 months post CK :

On Aug 30, 2017, it measured 26 x 29mm, which is actually slightly smaller! There was a cyst superiorly to the tumor, which is no longer visible.
The good news is I'm feeling well on most days. Although, my hearing has continued to decline on the LHS , I'm now the grateful owner of a Hansaton behind the ear hearing aid; which is becoming increasingly useful especially in groups or in cafes.

I'm happy that I don't have to worry about another MRI until Aug 2018! and given the latest info on the Gadolinium dye I requested if a no-GAD MRI would be OK; and my doctors have agreed .

more info on that here: https://www.tga.gov.au/alert/gadolinium-based-contrast-agents-mri-scans

so far so good,

Stella

[ANSydney]

Congratulations Stella on your good results.

I had my last MRI without gadolinium contrast agent and the images were OK.