My AN Story %u2013 Sydney to Stanford CK

[SP]

Thanks for your kind words ANSydney!!

I hope that you are doing really well. It's always interesting to read your comments and updates on this forum.

the advice i got from Stanford was that it was okay for me obtaining future MRIs without GAD contrast as long as the images include a sequence called a FIESTA sequence, so they can visualize the tumor well without the contrast. 
My local specialist has confirmed that they indeed do this sequence at St Vincent's where i get my MRI's done.

I'm happy to wait again another 12 months, as over the last 3 years I've had about 10 MRI's.

Stella

[ANSydney]

Hi Stella,

I'm doing very well. With someone with a large tumor and no treatment, it's somewhat unconventional.

I'm glad you like my posts. It's an interesting field to research. And in my case very pertinent.

My MRI was a T2-weighted turbo spin echo. I'll have to research how that differs from FIESTA sequence. (You'd think the radiologist would be the experts on getting the best picture!)

Good luck going forward.

[SP]

Here is the latest from me at 3 years post CK:

Tumor is stable in size at 2.9cm x 2.8 cm (no third dimension provided).

Hearing has shown further slight decline --- slight hearing aid adjustment to account for this.
Slight enlargement seen on ventricles,  so a visit to my ophthalmologist is required to ensure there is no  Papilledema :optic disc swelling that is caused by increased intracranial pressure due to any cause. I have had this checked before and was all OK.

In general I feel OK -- I try not to dwell on this tumor in my head most days -- except for this time of year when the check ups ramp up. So I manage stress by; spending more time in the sun, going to yoga, good nutrition and good coffee .

wishing you good health on your journey

Stella

[Gtmochi]

Hi SP!

Woot! Stable in size! How pleased you must be for that aspect of your report?!

The slight hearing decline and slight enlargement of ventricles...not so much. Hearing is tough to lose. That's an aspect of this whole thing that never fails to make me a bit emo - I am sorry you got that news.  But if you are feeling ok, that's good! Also, that you have had the slight enlargement before and all was well - history is in your favor. All will be well again!  Keep enjoying the sun, yoga, and taking great care of yourself!

Sending positive vibes from LA ;-)

Jessica

[SP]

Thanks for your lovely support Jessica!!!  L.A. good vibes sound great to me

some additional info from Stanford:  ...this increase in ventricle size occurs in about 4% of patients, (similar to my case), due to release of protein. Usually, it's just incidental findings with no need for intervention...
I'll post my ophthalmologist updates after next week... fingers crossed ...

It's sunny here again today --- some Vitamin D therapy is due; a walk in the sun 

I hope that you are doing really well !

Stella

[gary.s]

Great news Stella, the tumor is stable. I am sure that is quite a relief, those MRI's cause anxiety in all of us. I guess a decrease in hearing is something we should not be surprised by. It is part of the acoustic neuroma challenge. Best of luck at the ophthalmologist appointment, hope all is well.

Gary

[Gtmochi]

You're welcome, Stella! 
That additional news from Stanford is super. Confirmation that something happening is not unexpected is so reassuring, and even better, the word "incidental".  Such a lovely, don't-worry-about-the-issue kind of word! I'd hang on to that one  .

Best of luck at the ophthalmologist appointment!

Also! I am good, thanks!! Thus far I've only had the one little blip. I'm super grateful to be able to ride, work, walk the dogs...whatever. I'll get a better idea in less than 2 months(!) when I finally get my 6 month MRI and hearing test. Hallelujah. I can't wait till I pass that milestone.

Glad to hear it's sunny there today - enjoy your time outdoors! 

Jessica

[notaclone13]

Congrats on your good news Stella! Here’s to many more years of good results and hopefully no further problems of any sort. You traveled a long way for treatment, but it sounds like it was worth every mile.

[SP]

Thanks for your kind words Gary! yes you're spot on the hearing; a challenge for sure, but I'm grateful for my little hearing aid; I hope that you are doing well and that your hearing aid fitting is a positive step forward.

Jessica-- thank you for taking the time to follow my journey -- I really like the way you focus on the positive , its a great reminder to me. It's great to hear that you are doing well !  how you feel is so important - It's a relief when when the testing milestones are done, I'll keep an eye out for your updates and wish for you the very best outcomes.

@ notaclone13, thank you kindly for your positive support! yes a long way to go but so grateful for the opportunity & support.

keep on moving forward,
Stella

[SP]

this latest update is another stress, but really nothing I can do besides follow the next steps...

Ophthalmologist test results: I have Papilledema which is optic disc swelling that is caused by increased intracranial pressure.  The good news is I do not have symptoms of vision disturbance, headaches, nausea etc.

So now, I need to repeat the ophthalmologist testing in 4 weeks to see if its stable and then visit the neurosurgeon again to determine any next steps. Feels like a merry-go -round sometimes.

Stella

[Gtmochi]

Oh Stella. I am so sorry to read this news! What a disappointing, stressful thing to have to deal with.  It is good news that you don't have any symptoms of the Papilledema, and I truly hope that this is indicative of it remaining stable.  You have been through quite a bit (hydrocephalus is scary!) and made it though  -- all will be well!

Sending you positive, healthy, stable Papilledema vibes from LA,

Jessica

[SP]

Thanks Jessica !! -- your lovely support from across the pacific ocean is so kind and much needed It feels like only AN people know what this journey feels like.... thanks for the LA vibes -- I'll keep you posted and hope you are doing well.

Stella

[gary.s]

I am sorry Stella, what a bummer that this is happening to you. Hopefully being symptom free means the Papilledema is stable and will not cause you any further problems. All of this is so darn frightening, it takes a tremendous amount of energy to remain strong and focused. Things will get better Stella, we are all pulling for you...

Gary

[SP]

Thanks Gary! - you totally get it... your supportive message means alot .
I'm really hoping this is another, "lets retest and then not worry about it" situation. although now I'm stressing about it I'm noticing every wonky sound or feeling in my head.
I remind myself: one day at a time and to focus on what I can do, so off I go for a 60min walk in the sunshine... hope you are keeping well.

Stella

[SP]

I've procrastinated about writing this post -- but acceptance of reality is part of moving forward so here we go... the summary for 2018 so far is:

06 August 2018 MRI : "stable left vestibular schwannoma but slight further increased ventricular size"
22 Aug Ophthalmology exam: "significant increase in optic nerve swelling" --this is papilloedema.
17 Sept another Ophthalmology exam: "papilloedema is stable" -- same as previous, ie its still there.

Ok so what does this all mean? The build up of fluid pressure in the brain (hydrocephalus) is what is causing the vision findings. The solution to this : surgery to insert a shunt to relieve the build up of Cerebrospinal fluid (CSF) fluid.

Next steps: I am very grateful to live in a major city and have access to the medical expertise of my neurosurgeon in Sydney, he is also really aware of my aversion to any surgery; that said, if it's needed there really is no other recourse.  The good news (!) is I'm not exhibiting outward symptoms such as headaches, gait disturbance etc. In light of this, he has decided to retest me again in 8 weeks, both another MRI and Opthamology examination.

So now again my focus is on stress management, healthy eating, sleeping better (trying) and a hope and a prayer; any other tips are very welcome too....

Please lets hope this is one of the many things that comes and then goes with AN treatment.

Stella