Author Topic: My AN Story – Sydney to Stanford CK  (Read 12222 times)

SP

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My AN Story – Sydney to Stanford CK
« on: April 02, 2016, 04:05:16 am »
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)   ;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:
  ???

”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.

My best,

Stella


2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

mcrue

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Re: My AN Story – Sydney to Stanford CK
« Reply #1 on: April 02, 2016, 04:40:40 am »
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.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #2 on: April 02, 2016, 05:15:36 am »
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
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

rupert

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Re: My AN Story – Sydney to Stanford CK
« Reply #3 on: April 02, 2016, 08:19:06 am »
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

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Re: My AN Story – Sydney to Stanford CK
« Reply #4 on: April 02, 2016, 08:34:12 pm »
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.
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

KaiJiaH

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Re: My AN Story – Sydney to Stanford CK
« Reply #5 on: April 04, 2016, 03:13:19 am »
Hi Stella,

I am planning to fly from Sydney to Munich to receive CK treatment soon. Do you think the long flight post treatment have some impact on your recovery?

thank you very much

hope you feel better soon.
KJ
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #6 on: April 05, 2016, 08:13:58 pm »
Thanks KJ! -- I posted a reply to your Q on your new thread https://www.anausa.org/smf/index.php?topic=22646.msg979769791#msg979769791 -- hope this helps.

feel free to contact me if you have any more questions

Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #7 on: May 27, 2016, 04:00:37 pm »
A quick update here...

The May MRI showed no worsening of the original communicating hydrocephalus -thank goodness. In addition the cystic part of the tumor has collapsed which makes the overall dimension smaller - yiay  ;D  :)!

My local neurosurgeon was happy to wait 6 months for next MRI... but i will be doing my next one in August so I have clear 1 year results to send back to Dr Chang for assessment.

I'm much less fatigued than I was a few months ago and also have less headaches too; this latest good news has helped me to keep a positive mindset too.

Keep well,

Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

PaulW

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Re: My AN Story – Sydney to Stanford CK
« Reply #8 on: May 29, 2016, 02:50:44 am »
I believe diuretics may help hydrocephalus.
So something simple like a few cups of tea a day may help.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #9 on: May 29, 2016, 06:41:48 am »
Hi Paul,

Thanks for the tip ! & hope you are keeping well.

S
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

PaulW

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Re: My AN Story – Sydney to Stanford CK
« Reply #10 on: May 29, 2016, 10:12:58 pm »
Have a friend who has had hydrocephalus after GK on a 3.2cm tumour.
I believe as the tumour dies it can give off proteins which end up in the CSF. This can thicken the CSF making it more difficult to flow/drain
By drinking more and taking diuretics their CSF pressure dropped...
They were going to get a shunt... but managed to avoid it...
They had a series of lumbar punctures to reduce their CSF levels. The analysis of their CSF did show high levels of protein.
Maybe worth asking a medical professional for some guidance on getting CSF pressures down without a shunt.
Just keep in mind that high CSF pressures has some serious consequences and can lead to blindness amongst a lot of other things.
So anything that can be easily done to reduce your risks would be worth considering.
Getting a shunt maybe annoying but its better than losing your eye sight.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #11 on: May 31, 2016, 05:47:06 pm »
Thanks Paul !! I really appreciate your inputs here - as so far I've had minimal success in finding non-surgical approaches to addressing communicating hydrocephalus.

I've been having regular checks with an ophthalmologist to monitor any impacts to my eyes, particularly the optic nerves (both sides can get affected)  ; i"m at the higher end of the normal range at the moment.
I agree, if a shunt is needed its needed and so I'm keeping very regular checks with my neurosurgeon - another MRI in a couple of months...

take good care

Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

Catana

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Re: My AN Story – Sydney to Stanford CK
« Reply #12 on: August 20, 2016, 10:35:18 pm »
Hi Stella,

Thank you so much for sharing your story!  I read it as I was trying to make a treatment decision for my 2.5cm AN.  I just returned home last night from CK at Stanford with Drs. Chang and Soltys and noticed that my treatment was exactly a year after yours, down to the day.  Just wondering how you are doing--I hope the hydrocephalus has continued to be under control.  I would love to know the results of your 1 year scan when you have it!

Best wishes,
Carrie
Age 39
06/05/16:  L sided hearing loss
06/16/16:  2.5 x 2.5 x 2.5cm L AN
08/17-19/16:  Cyberknife at Stanford

SP

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Re: My AN Story – Sydney to Stanford CK
« Reply #13 on: August 28, 2016, 03:15:52 am »
Hi Carrie,

Thanks so much for your post - sorry i just saw this- I usually get notified via email on responses...

Congratulations on completing your treatment!!!- I hope the team took good care of you & all the best for your continued healing ahead.

Yes its been just over the 12 months and I have just completed my MRI and audio gram. I was waiting to get my feedback from Dr Chang before posting my update, but here is the status so far...

after having my results reviewed my local Neurosurgeon , he is happy that the hydrocephalus is stable :) and also I no longer have the wooshing sounds going on in my head (although the tinnutis is still there). The tumor is stable in size (ie no shrinkage), but as before shows signs of necrosis. Unfortunately my LHS hearing has further declined - it's fine for one on one conversation, but gets bit tricky in noisy environments - I guess that's the least of my worries for now- I'm pretty happy to have dodged surgery twice :).

Keep well

Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

Elsy

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Re: My AN Story – Sydney to Stanford CK
« Reply #14 on: October 01, 2016, 08:35:38 pm »
Hi Stella!

I had a right 3cm AN diagnosed mid-year with GK done on 26 July.

At this time point, I still have times of "wooziness" and what's more troubling, is a loss of my tasting ability! I can taste the individual flavours ( salty, sour, sweet and bitter) but am COMPLETELY unable to blend all of them together so food tastes just blah and I've had to ask my husband and kids to taste my cooking so as to be able to season right...

Did this occur to you? I'll be happy to hear what anyone else has to share on this post-radio surgery.

Thank you so much,
Elsy

 


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