My AN Story %u2013 Sydney to Stanford CK

[notaclone13]

Stella, I will be hoping and praying along with you that the problem resolves and you won’t need any surgery.

[ANSydney]

Stella,

I believe sleep is a big factor in CSF pressure. This is just my thinking, not anything medical.

If only there was a better way than surgery to address increased intracranial pressure.

Apparently, you can get temporary relive from excessive intracranial pressure by a spinal tap. From what I gather, this involved draining some CSF from the base of the spine. It won't fix the problem, but may give you an indication of what a shunt would do.

Sorry, lots of words and nothing reassuring. I hope things turn out well for you.

[Gtmochi]

Hi Stella,

Ugh. Limbo. What a wretched place to be. I am so sorry to learn that your issue has not resolved, but happy to know that you are still not exhibiting any symptoms (a light!), and that you’ll be rechecked in 8 weeks' time.

You are so resilient and brave to face this head on and put it in writing — there’s nothing to make a yucky truth more real than black and white (and on a forum!).

I wish I had some really helpful, insightful tips, but I’ve got nothing. Just a bunch of positive thoughts and the sincerest of hopes that this is one of those AN things that waxes, wanes, and GOES AWAY.

Warmly, Jessica

[gary.s]

I am really sorry to hear about the problems you are having Stella. If hearing loss was the only thing we had to deal with it would almost be a blessing. All of the additional symptoms and issues makes it very difficult to cope at times. You seem like a very strong person, just have to keep pushing forward.

Even though we are spread all over the globe, we are right there with you Stella. Hopefully some positive results will occur when you are rechecked in the near future. Be well.

Gary

[SP]

Thanks everybody, all your comments really help to feel not so alone on this crazy ride.

@notaclone13: thank you!, your kind comment is exactly what I need.

@ANSydney: your good wishes and insights are always so welcome to me! I agree with you on the sleep; its been elusive for me for a long time but i keep working at it ... increased exercise, set nighttime routine, lavender room spray etc etc. Yes I've heard that of the spinal tap too, yes it's a temporary measure given the known cause of the CSF build up. 

@Jessica: thank you! in my world black & white (acceptance) gives us a bit of control about what to do next... your positive thoughts and hopes are uplifting for me.

@gary.s: in the context of all these things, yes hearing loss is the least of worries (except it doesn't feel like it at the time). I really appreciate your very kind & supportive words.

Keep well my global and local friends ! and hopefully my next post is full of positive outcomes.

Stella

[robinb]

Hi Stella-

I just responded to your PM, hope you get some additional opinions.

Sending you good thoughts and a cyber hug!

-Robin

[SP]

Thanks for getting back to me Robin-- be well.

[SP]

Hi all,

Well here we are, my retest MRI and ophthalmologist exam are done. I can tell you that the stress of waiting to do these retests to determine the extent of increased intracranial pressure (and potential surgical intervention); has been a roller-coaster.

In any case I have good news! Although the papillodema is still there, it has not worsened, so the ophthalmologist is OK with monitoring this. The MRI showed a slight reduction in the size of the 3rd ventricle, which is a great sign, as the increased ventricle size was the first red flag. So maybe cutting the coffee and hitting the gym 3x week had some impact here (pure speculation but it gives me some actionable tasks).

I still need to retest both (again) in 4 months (around March 2019); I'm really hopeful this reverse trend continues.

keep on keeping on,

Stella (relieved and refocused on the positive)

[notaclone13]

Stella, so happy to hear your good news. Keep doing what you are doing and hopefully you will have more good news 4 months from now.

[SP]

Thanks notaclone13 !  It was such a relief to have some positive news.

[ANSydney]

Great to hear Stella. Looks like things are stable. A good word to hear once you diagnosed with a vestibular schwannoma!

[gary.s]

Great news Stella. Time to relax and get rid of all that anxiety. I am really happy for you that things are okay. It is so nice to hear about some positive news on this forum. Stay healthy and strong. Be well,

Gary

[Gtmochi]

Such fantastic news, Stella! What a huge relief to learn things are stable and getting better.
Wishing you continued good health!
Jessica

[SP]

Hello ANSydney, Gary, and Jessica!

Thank you all for your positivity and words of encouragement --- they really man a lot to me, especially coming from people who know what its like first hand. I am so relieved and looking forward to simply living minus the testing and anxiety for the next few months.

to my US friends - I hope you enjoy a healthy and Happy Thanksgiving
in Sydney - let's hope for a healthy and joyful summer

Stella 

[SP]

Hi all,

My March retest MRI and ophthalmologist exams are done. Things are stable!

I still have increased intracranial pressure as evidenced by papillodema in both eyes but the left optic nerve is slightly better; in any case I have 6 months before a retest to monitor this.

My neurosurgeon reviewed my MRI- things look about the same (stable) - happy for a 12 month check up now.

I'm hoping with time and some healthy living that the increased pressure will resolve. I'm looking forward to being test-free for a while.


keep on keeping on,

Stella