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 –your emails were so kind), crivers
(Cayce, my US friend that lives in Perth, Australia – 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’s 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’s Hospital in Sydney – 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’m 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’s benign, it’s big (approx 3.0 cm), it must be treated.
At this stage my symptoms were....tinnitus (I had 2 years of GP’s telling me there was nothing they could do for this –no 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 – how bad they didn’t 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 – it all just depended.
For some reason I refused to accept that surgery was the best option for me – 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) – 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)
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: ”The 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.”
Dr Chang says: “In general, the fluid does not go away on its own. The best scenario would be no further buildup of fluid and no clinical symptoms.”
I now sit and hope it doesn’t get any worse, so among other things, it doesn’t 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’t be needed (ie an operation to insert a shunt).
I’d 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.