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Author Topic: Cystic AN  (Read 10291 times)

GaryWNT

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Cystic AN
« on: August 25, 2015, 07:57:03 pm »
I've been told that my AN (left sice 2.3 x 2.1 x1.7cm) is cystic in nature. The radiology report said, "Contrast scans show irregular enhancement of the lesion with apparent areas of necrosis within the lesion." The surgeons I've consulted have described the tumor as being cystic and have said that surgery is the only option for this kind of tumor. I suppose I accept that but I'm trying to understand what it is about this kind of tumor that means radiation is not an option. Can anyone offer information about that or steer me to information?
Thanks,
Gary
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Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

PaulW

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Re: Cystic AN
« Reply #1 on: August 26, 2015, 02:34:07 am »
Cystic tumours can be treated with radiation... I believe Dr Konziolka probably one of the most experienced neurosurgeons at Gamma knife and acoustic neuromas in the world, did a presentation last year showing excellent results on Cystic tumours..
 I would seek out more opinions..   
http://www.med.nyu.edu/neurosurgery/about-us/our-team/our-physicians/douglas-kondziolka-md

Dr Chang at Stanford another very experienced neurosurgeon with acoustic neuromas and Cyberknife  worth looking up..too
There are others I am sure but these two would probably have the most experience in the U.S. With Cystic Acoustic Neuromas.
http://neurosurgery.stanford.edu/cyberknife/team.html
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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!

GaryWNT

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Re: Cystic AN
« Reply #2 on: August 26, 2015, 04:37:52 am »
Thank you, PaulW! I'll explore those two leads. Very much appreciated!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

john1455

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Re: Cystic AN
« Reply #3 on: August 28, 2015, 11:54:51 am »
Gary,
My AN was also cystic and I was told by my first neurosurgeon at Kaiser San Francisco that CK may not be as effective with such tumors. When I went to see Dr Chang at Stanford and asked him about that, Dr Chang said he treats ANs with CK the same way whether they are cystic or not. Dr Chang does both radio surgery and microsurgery, btw. My latest MRI in May 2015 showed my AN decreased slightly in size and was stable.
« Last Edit: August 28, 2015, 12:03:24 pm by john1455 »
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Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

GaryWNT

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Re: Cystic AN
« Reply #4 on: August 28, 2015, 09:05:46 pm »
Thank you, John! Could you say a bit about your post-treatment symptoms? Perhaps PM?
I really appreciate your note!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

john1455

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Re: Cystic AN
« Reply #5 on: August 29, 2015, 01:35:37 am »
Gary,
I sent you a PM.
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Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

ampeep

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Re: Cystic AN
« Reply #6 on: August 30, 2015, 12:11:20 am »
Hi Gary,

My AN was also cystic & the GK popped it!  My neurosurgeon was Dr. Gerber @ Straub Clinic in Honolulu; he does both surgery and GK and recommended GK in my case.  Right after the treatment, I didn't feel any different but dizziness, increased tinnitus and total loss of hearing on my GK side turned up at 4 months.  At that time, my AN had swelled, which explained the increased symptoms. 

Over the past 6 months, my  hearing has slowly improved, so I can actually make out some words!  Never thought that would happen.

My last MRI in August showed that my AN had shrunken some more, so I can come in for a check-up in 2 yrs!
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8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

GaryWNT

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Re: Cystic AN
« Reply #7 on: August 30, 2015, 07:47:38 pm »
Hi, ampeep,
Could you say a bit more about ". . . the GK popped it!"???
Glad to hear you are improving!!!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

ampeep

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Re: Cystic AN
« Reply #8 on: August 31, 2015, 12:17:39 am »
Hi Gary,

Thanks!  For a while, I wondered if my symptoms would ever get better.  Just had to be patient & it did after almost a year.

When I was originally diagnosed, my AN didn't have any cysts.  After 6 months of w&w, it got bigger and developed several cysts.

At 4 moths post GK, it swelled and caused some side effects.  In my follow-up MRI at 6 months, my neurosurgeon said that the AN had shrunk and no longer had cysts.  That was surprising because my symptoms were still the same as at 4 months.  It continued to shrink at 1 year post GK.  Might have been the wrong terminology, but sounded like the cysts popped!

It's good that you're finding out about options; I learned a whole lot from folks in this forum - much more than from my doctors.  Take your time before making a decision.

Keith
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8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

GaryWNT

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Re: Cystic AN
« Reply #9 on: September 01, 2015, 07:47:41 pm »
Keith,
Thanks for the clarification! "Popped" sort of startled me! Your explanation makes more sense. It seems that patience is the key quality in dealing with an AN . . . both as one considers treatment options AND post treatment as well. Quite a journey.

Wishing you all the best in your continued recovery!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

GaryWNT

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  • Ready for 1st MRI post CK . . .
Re: Cystic AN
« Reply #10 on: October 14, 2015, 10:47:42 pm »
Well, my CK treatments(3 day) are scheduled for the second week in November with Dr. Chang at Stanford. I'm wondering about the side effects in the week or two following the treatments. I understand that there are likely to be things going on for a longer period of time post-CK, but I'd really like to know what to expect in the short term . . . mostly because I'll need to travel trans-Pacific to return to my home.
Thanks for any advice!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

john1455

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Re: Cystic AN
« Reply #11 on: October 19, 2015, 04:54:48 pm »
Be reminded that results vary among different people so with that in mind, I only experienced an increase in my tinnitus in the 1-2 weeks after CK. Overall, I felt as if nothing was ever done. There was neither a worsening nor improvement of any of my pre treatment symptoms.
Logged
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

ampeep

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Re: Cystic AN
« Reply #12 on: November 04, 2015, 03:11:20 pm »
Hi Gary,

Try not to over-anticipate any side effects, as you may be one of those that don't get any.  Appears that you'll be having your CK treatments soon.  Hope it turns out well.

Keith
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8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

PaulW

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Re: Cystic AN
« Reply #13 on: November 04, 2015, 04:16:20 pm »
From others I have talked to my post CK side effects were worse than many, and they started within an hour of CK

Dont let that alarm you....

24 hours after CK, my hearing was worse, I was a lot dizzier, and tinnitus started for the first time....
Very similar to a night out at a club with music that is way too loud, and too many drinks, and the next day your ears are still buzzing

I am sure most of us have done that once in our lives.... Thats the best way to describe it.

So just like you are still able to do amazing feats of stupidity after a big night on the town, like partying all the next day, I am sure you will be more than capable of getting yourself on a plane. I live in Australia, I received Cyberknife in Munich Germany. The next day I went sight seeing and walked for about 6 hours, caught trains, and then flew back to Australia that night. I own a Telco store and my store was 1 of 5 in a town of a million people to do a midnight opening for the release of the iphone 4.    I remember ringing Australia when I landed in Singapore to make sure everything was right for the midnight launch, which was happening in a few hours...
When i got off the plane, I drove my family home from the airport, had a shower, and was at work by 8:30am to see how my staff had endured the overnight iphone madness...

Yes you can have side effects, but you can put them on ignore and push past it and pretty much do most things...
Its just that you get sick of the effort required sometimes to push past the dizziness, tinnitus, hearing issues...
Logged
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!

GaryWNT

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  • Ready for 1st MRI post CK . . .
Re: Cystic AN
« Reply #14 on: November 07, 2015, 06:54:09 pm »
Thanks, everyone, for your comments and reassurances! I had my first appointments at Stanford yesterday. The MRI is finished. Monday I have what they call the simulation. I guess that involves a CT scan and fitting the mask. I'll have three treatment sessions on Wed., Thurs., and Friday. I'm feeling great and am optimistic about the path ahead.

This forum has been a real God-send to me for making decisions about my treatment path. Thanks, everyone!!

Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016
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