Treatment Options > Radiation / Radiosurgery

My AN Story %u2013 Sydney to Stanford CK

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SP:
Firstly I am grateful for all your stories and experiences as I have spent much time on this discussion board, but up until now posted very little. Thank you for the kindness I have personally received from many of you...sunny (who kept in constant touch, especially while I was in Palo Alto), CC (an Aussie in the US, Cathy %u2013your emails were so kind), crivers (Cayce, my US friend that lives in Perth, Australia %u2013 lots of great support), Paul W (thanks for taking the time to chat), fbarbera (Francesco offered me generous support, and also he has  tonnes of information on his CK experience at Stanford see: www.myacoustic.org) and to many,many others I have emailed and spoken to, you were all very generous with your time, when I especially needed it most.  Importantly I have my amazing husband, who bravely holds my hand & travels this whole journey with me.

It%u2019s taken me a while to work up the courage to accept the reality of my situation (perhaps I was in some form of denial) and share my story; here we go:

My AN story began with a shock diagnosis on the 4th March 2014 ; post an MRI at St Vincent%u2019s Hospital in Sydney %u2013 it was about 1pm when the test was completed; and I was told to wait in the small waiting room outside the MRI room.
Next thing I know I%u2019m sitting with a radiation specialist as he explains to me I have a tumour in my head & they had gone to get my husband to come join me to hear the news. This is all I hear....it%u2019s benign, it%u2019s big (approx 3.0 cm), it must be treated.

At this stage my symptoms were....tinnitus (I had 2 years of GP%u2019s telling me there was nothing they could do for this %u2013no further testing advised) and then my main symptom manifested, it was numbness from the left hand corner of my mouth spreading over my whole left cheek right up to my left eye. So after this symptom I was sent to a neurologist, to the above mentioned MRI and then the neurosurgeon. I took it upon myself to also see another neurosurgeon and another neurosurgeon... etc... looking for alternatives to brain surgery. My rationale was that apart form the above symptoms, I felt fine, I was overall healthy, my hearing & my balance tested great.

In summary I was consistently told that the recommended treatment (surgery) would result in: 100% chance of hearing loss in my left ear,(based on translab surgery); 30% chance of facial palsy %u2013 how bad they didn%u2019t know, 30% chance of hydrocephalus, possible stroke, infection etc etc and also 1% chance of death. Oh and by the way, they thought they might get most of the tumor out or just some %u2013 it all just depended.

For some reason I refused to accept that surgery was the best option for me %u2013 even though approx 5 different neurosurgeons in Sydney and 2 from Europe told me that was the way to go. The gamma knife people in Sydney have only been there for a few years, so I felt hesitant about their level of experience, anyhow in the end they said no, and there was one Cyberknife in Perth (even newer than the GK set up) %u2013 also said no- based on the size of the tumor.

So after much heartache, mountains of research, acupuncture, herbal medicine, meditation, scientific debate, & refinancing the mortgage, I decided to have CK treatment with Drs Chang & Soltys at Stanford in August 2015.
So here I am 6 months later ... here is the update:

After my 6 month MRI (24 Feb 2016) & Audiology testing, the results are:

Size: 3.2 x 2.5 x 3.0 cm
The good:  size unchanged, necrosis of tumor (darkening on MRI)   ;D
The bad: hearing significantly declined in left ear (detected by audiogram)  :(
The worst: Enlarged fourth ventricles = communicating hydrocephalus ...this showed up in the MRI as described below:  ???

%u201DThe MRI scan also showed that the ventricles (the fluid filled spaces) in the brain are slightly larger than before.  This can happen in acoustic neuroma patients since the tumor (alive or dying) can secrete protein which can alter the cerebrospinal fluid absorption in the brain.%u201D
Dr Chang says: %u201CIn general, the fluid does not go away on its own. The best scenario would be no further buildup of fluid and no clinical symptoms.%u201D

I now sit and hope it doesn%u2019t get any worse, so among other things, it doesn%u2019t affect my left eye. I am now also seeing an ophthalmologist because of the hydrocephalus,  I am at risk of papilledema, see definition here: http://www.hydroassoc.org/papilledema-vision-loss-and-hydrocephalus/.

Next steps: another MRI and another ophthalmological exam in early May 2016.

I hope (& pray) that this issue somehow resolves itself and that further treatment won%u2019t be needed (ie an operation to insert a shunt).

I%u2019d love to hear any thoughts on managing /reducing communicating hydrocephalus and the associated symptoms (nausea, headache, blurry/double vision).

I am currently resting a lot, working less, & trying to stress less & eat /sleep/exercise healthily.

My best,

Stella

mcrue:
Thanks for sharing. Your husband sounds like a terrific guy.

Some patients with hydrocephalus have a dramatic improvement after a single lumbar puncture. The problem is that many patients who show no significant improvement from a single tap do show a benefit with extended CSF drainage during which 300-400 ml of CSF can be drained over 4-5 days in the hospital.

Extended CSF drainage, therefore, is more sensitive - it identifies more patients who will ultimately benefit from a shunt, and it has fewer false-negatives - it doesn't miss the patients who don't respond to a single large volume tap.

SP:
Thanks for the fast reply & info-- I had not heard of this procedure to address hydrocephalus.
I'll be sure to mention this to my neurosurgeon on next appt.

Wishing you a healthful recovery.  S

rupert:
Follow up MRI's at short intervals are needed in your case.  Although I believe you will know, (feel) if the hydrocephalus gets to a point where you need some emergency treatment.  The size of the AN is pushing the limits but has been done successfully before with others.  The big issue as you know is if it swells,  the complications of hydrocephalus can rear up and that's serious.  Positives though are, it hasn't swollen yet so probably won't and that although with larger tumors the success rate is lessened it is still very high odds that it will kill off the tumor.  The tumor will shrink some as it dies.  It collapses in on itself and dries up for lack of a better term.  This should help with reducing any hydro complications.  Again, if your 6 months out and it hasn't changed that's really positive.

SP:
Hi Rupert,
thanks for your comments... Yes indeed the positive part is in fact the tumor itself is still the same size ie not swollen;  at least not enough for the limits of the MRI machine to pick up, and showing darkening (necrosis). However this form of hydrocephalus is apparently formed by the protein secretions from the tumor (alive or dying) building up in the ventricles and interfering with CSF re -absorption. I'm hoping it doesn't become a bigger issue too.

wishing you good health S.

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