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91
Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by gary.s on October 01, 2018, 11:20:18 pm »
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
92
Radiation / Radiosurgery / Re: CyberKnife Journey at Stanford
« Last post by Gtmochi on October 01, 2018, 07:38:26 pm »
Hi Stella,

I feel a bit awkward with my uneventful news, to be honest! So many others at this point have had major difficulties. Depending on the day, I either count myself lucky or begin to fret about the other shoe dropping.   

The hearing loss for sure is a big source of anxiety, but I have begun to realize that some of that is about grieving its decline. At the outset of this journey, doctors advocating surgery (while also telling me I was a candidate for either) would tell me something along the lines of, “if you are thinking surgery will kill your hearing and CK will save it,  you are wrong and will lose it either way.” I would answer fiercely, “If hearing is the price to pay for a successfully radiated AN, that’s a fair trade.” I realize successful treatment and hearing loss are not mutually inclusive, but it was a deal I made with myself at that time. The reality, of course, is that I am sad, angry at the unfairness, and scared of the inevitability. I can do nothing but wait and see how things develop, both with regards to my hearing and what will be revealed by the MRI. I am preaching to the choir, of course! Every AN patient knows what this is like.

That said, it’s reassuring and calming to hear from someone on the other side (like you and Gary) that, though a big adjustment, it’s pretty manageable. And going to be ok. Different, but ok.

I am hoping and wishing for more waning for the both of us! Thank you for the positive thoughts!

Jessica
93
Radiation / Radiosurgery / Re: CyberKnife Journey at Stanford
« Last post by Gtmochi on October 01, 2018, 07:15:32 pm »
Hi Gary,

You are right - it’s been pretty consistent so far. I’ve had bobbles and bumps, but for better or for worse I try hard not to focus too much on those.

I agree about the hearing getting better -- that’s definitely not happening. I am lucky I can still hear the phone on that side, but it’s for sure not perfect. When it comes to my upcoming MRI and audiogram, the worry is so real. I am trying to prepare myself for the inevitable, reduced hearing report (relative to my initial audiogram) as well as what may be revealed by the MRI. But more than anything I just want to get it over with and know what is happening to the dang thing instead of torturing myself with scenarios good, alarming, and everywhere in between.  Thank goodness for horses - they keep me centered like nothing else! We are fortunate to be able to ride.

It sounds like you are traveling a similar road - ups and downs, but all things considered, a middling one. Here’s hoping things take an upward turn from here!


Jessica

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Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by Gtmochi on October 01, 2018, 06:49:42 pm »
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
95
Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by ANSydney on October 01, 2018, 06:18:44 pm »
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.


96
I also had only 2mm, dx 2010, now grown to 3mm. Ive had so much trouble with dizziness, balance, fogginess, but stable hearing.  It is so weird that such tiny tumors can cause so many problems.
97
For those in the 'watch and wait' status / Re: Intracanalicular ANs poll
« Last post by Ellen K on October 01, 2018, 03:31:05 pm »
Almost 8 years W & W with only 3mm AN in IAC. But Im weird. No real hearing loss, massive balance and dizziness issues, fatigue and brain fog. I just developed double vision over the past couple years too, so there may be something else going on, but MRI looked OK. I also have ear pain and fullness. Go figure!
98
Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by notaclone13 on October 01, 2018, 08:27:52 am »
Stella, I will be hoping and praying along with you that the problem resolves and you won’t need any surgery.
99
Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by SP on September 30, 2018, 08:55:08 pm »
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
100
Radiation / Radiosurgery / Re: CyberKnife Journey at Stanford
« Last post by SP on September 30, 2018, 08:26:03 pm »
Hi Jessica,

It's great news!!, so glad things are tracking well...your positive attitude is your best ally!
the hearing loss for sure is a tricky one to navigate, it was a big adjustment for me too, but at overall is usually manageable.
totally agree: "symptoms are cyclical, waxing and waning as they please" : lets vote for more waning :).

I've got my fingers crossed for your MRI & Audio coming up.
Stella
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