Author Topic: Alternating between no growth and rapid growth  (Read 5182 times)

LizAN

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Alternating between no growth and rapid growth
« on: April 26, 2012, 09:06:17 pm »
I haven't posted in a long time and had managed to put this thing mostly out of my mind, despite what seems like continuing loss of hearing and ongoing "steadiness" issues.

I was diagnosed in August 2010, with a 9mm AN in my left ear.  Six months later, it had shown no growth and might have even shrunk a little.  To be honest, during that time, I had weekly sessions with an energy healer.  Coincidence?  I quit doing it at that point.  14 months later, my third MRI shows the tumor has grown to 12 mm.

My MRI was on Friday.  Today, Thursday, I got a call from Dr. Slattery's office to set an appointment for tomorrow evening.  I wasn't expecting a call so quickly.  My hearing test isn't until Monday.  I'm guessing, with rapid growth, he's going to recommend I schedule surgery.  I'd really love to buy some time to work with an energy healer again, until my next MRI.  The tumor still isn't that large, and I'd just like to see if we can stop it from growing again.  I just started a new job and my disability insurance won't cover this for another year.

I guess, with a total of 3mm growth in 20 months, it's not that far above average, overall, so maybe I shouldn't panic.  Has anyone had experience with alternating between no growth and rapid growth?

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

LizAN

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Re: Alternating between no growth and rapid growth
« Reply #1 on: April 30, 2012, 06:08:16 pm »
I had my hearing test today.  I have lost all speech discrimination in my left ear.  Is that considered having "no serviceable hearing?"

When I got home from work today, I finally read the MRI report.  It seems my tiny tumor is no longer so tiny.  It extends all the way to the cochlea and is now also protruding into the CPA.  I have not yet viewed the scan myself, so I don't know how close it is to the brain stem, but the report does say it is not impinging, so that's the good news.  On the phone, the nurse had told me it was 12 mm, but the actual report says it is 12.4 mm.  My last scan was 14 months ago.  At that time, it was 8 mm, so that is 50% growth in 14 months.  I'm really wondering about those dental xrays I had a few months back.  I'm trying not to kick myself, as the tumor had stabilized.  This is scary.  I can't think of a good reason to ever have dental xrays again.

I haven't talked with Dr. Slattery yet.  I had an appointment for last Friday evening, but I wanted to wait until he could see the actual scan, which I will be picking up and sending to him on Wednesday.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

BeckyMax

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Re: Alternating between no growth and rapid growth
« Reply #2 on: April 30, 2012, 07:19:47 pm »
I found this link on serviceable hearing.
http://en.wikibooks.org/wiki/Radiation_Oncology/Toxicity/Inner_Ear#Gardner_Robertson_Scale

 Please keep us posted on how you are doing.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

LizAN

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Re: Alternating between no growth and rapid growth
« Reply #3 on: April 30, 2012, 08:51:46 pm »
Thanks, Becky.

I appreciate the response.  This is a pretty lonely experience.

That's a very helpful link.  It's pretty clear from the description that I no longer have serviceable hearing in the AN ear.  I wouldn't make a decision without another hearing test, given that it was an intern who did my hearing test today, but I am definitely leaning toward translab.  A year and a half ago, middle fossa was recommended, when I only had a mild hearing loss.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

james e

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  • 75years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: Alternating between no growth and rapid growth
« Reply #4 on: May 01, 2012, 08:17:27 am »
We are neighbors. I live in Georgetown and I also had the loss of hearing and the wonky feelings. I am always interested in people who have an interest in other than traditional medical practices. Recently we had a poster eating raw foods hoping the tumor would heal. You are using an energy healer. Faith is wonderful. Maybe you can explain what an energy healer does. My younger sister believes she can make people  heal. Some people pray. My great grandfather, born in 1855, was a doctor, and I am sure part of his ability to heal people was through power of suggestion. I am anxious to hear about your energy healer.

You are well aware of watch and wait, and surgery. Your doctor will help you decide when the time is right for surgery. Modern medicine is a wonderful thing, but good mental health is an important part of the healing, so use your energy healer to help you recover.

James

LizAN

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Re: Alternating between no growth and rapid growth
« Reply #5 on: May 02, 2012, 09:58:46 pm »
Thanks, James.

You are right, we are neighbors!  I live out near Dripping Springs now, but I work in north Austin, near the Arboretum.  It's a long commute.

How are you, since your surgery?  Does your BAHA help you tell where sounds are coming from and help you understand what people are saying in a crowd?  I have lost both of those abilities, and it's pretty frustrating.  Where did you have your surgery and what was it like?

I'd like to hear more about your sister's beliefs and experiences.

I had planned to pick up the CD of my MRI today and overnight it to Dr. Slattery, so that I could talk to him on Friday, but somehow, I managed to forget all about it, when I got into traffic after work.  I'm so preoccupied that I'm obviously not thinking clearly.  Maybe I'm just scared of what he's going to say, and avoiding the inevitable.

My hearing test may not have been very accurate.  It was done by an intern.  This morning, when my clock radio went off, I could understand what the DJ was saying, even though my good ear was on the pillow.  I need to tell the doc to take those results with a grain of salt.  A LOT depends on the volume of the speaker and background noise.

I'm not sure I fully understand what an energy healer does, but I'm hoping to learn more.  I just ordered a bunch of books on Amazon.  Several are by Caroline Myss, a well-known medical intuitive.  From what I understand, she thinks we have subconscious reasons for creating illness, and if we address those issues, we can heal ourselves.  I have also heard her say it is a rare person who is brave and humble enough to do it.  Surgery might actually be the easier path!  My understanding is that an energy healer cannot heal me without my cooperation, as it's mostly about my own beliefs.  But they can lend their energy and amplify the effects.  Caroline Myss is mainly a diagnostician.  I don't think she calls herself a healer.  I need more information from people who have recovered with the help of a healer, or from the healers themselves.  I have seen the Law of Attraction at work in every other area of my life, so there is something to this stuff.  Other than this tumor, I have completely turned my life around in the last few years.  It was a huge mess, and the tumor feels like a remnant of that.  At this point, I want to see it as just a bump in the road.

You are right about the power of suggestion. We all know it as the placebo effect, which has been well documented.  What we believe can make a huge difference in what we experience.  Having a background in engineering, it can be a challenge for me to believe in anything I can't see.  Then again, I can't see electrons, and I believe in them.  So it's not hopeless.

I like your idea of using the energy healer to help me recover from surgery.  That would be useful, and it is certainly a good fall back plan, should I need to go the surgical route.  I'm telling myself that it's a win-win situation.  Either I'm going to shrink this thing on my own, or I'm going to have it surgically removed and fully recover.  Believing that will get me through this.

Sorry for rambling on and thanks for listening.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

Suu

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Re: Alternating between no growth and rapid growth
« Reply #6 on: May 03, 2012, 03:35:00 am »
G'day Liz

You didn't ramble.  I loved reading your posts and the responses you've had so far.

Keep on looking toward the future and we'll all get there with you, and with a smile on our dials.

Lovenhugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

ash

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Re: Alternating between no growth and rapid growth
« Reply #7 on: May 03, 2012, 05:16:34 pm »
Hi Liz,

I was born deaf in my left ear and have an AN in my right ear. As of March 1, my AN grew 2 mm in just six months for a total of 8mm. In the past month I have had headaches, feel my tinnitus is worse, hearing sensitivity is worse and my hearing is worse even though my hearing test says otherwise. I even have that wonkyness feeling, my wife says it's all from stress. I decided on cyberknife from what I have read it has the best chance of retaining your hearing and Dr. Chang is supposed to be the best at it. I need to save what I have left. Sunday I am flying to California from Jersey to have cyberknife done by Dr. Chang. Good luck what ever you decide.
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

LizAN

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Re: Alternating between no growth and rapid growth
« Reply #8 on: May 03, 2012, 09:40:20 pm »
G'day Liz

You didn't ramble.  I loved reading your posts and the responses you've had so far.

Keep on looking toward the future and we'll all get there with you, and with a smile on our dials.

Lovenhugs,
Suu xxoo

Thanks, Suu!

The more I read, the more comfortable I get with the idea of having surgery.  I still hope I don't have to do it, but if this thing keeps growing, it is inevitable.  I hope I can put it off for a year, as I just came off two months of unemployment, which wiped out my reserves.  It's nice to have this group - otherwise I would feel very alone with this.  Thanks for being here.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

LizAN

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Re: Alternating between no growth and rapid growth
« Reply #9 on: May 03, 2012, 09:45:04 pm »
Hi Liz,

I was born deaf in my left ear and have an AN in my right ear. As of March 1, my AN grew 2 mm in just six months for a total of 8mm. In the past month I have had headaches, feel my tinnitus is worse, hearing sensitivity is worse and my hearing is worse even though my hearing test says otherwise. I even have that wonkyness feeling, my wife says it's all from stress. I decided on cyberknife from what I have read it has the best chance of retaining your hearing and Dr. Chang is supposed to be the best at it. I need to save what I have left. Sunday I am flying to California from Jersey to have cyberknife done by Dr. Chang. Good luck what ever you decide.

Hi, Ashman,

Sounds like your neuroma is growing at the same rate as mine.  When were you first diagnosed?

By "hearing sensitivity" do you mean that certain sounds hurt your AN ear?  That happens to me.  It makes it much harder to listen to music now, and music is one of my passions.  I need an equalizer on the car stereo.

Good luck with your treatment.  If I were going with radiation, it would be CK with Dr. Chang!  Keep us posted!

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

ash

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Re: Alternating between no growth and rapid growth
« Reply #10 on: May 16, 2012, 06:31:35 pm »
Hi Liz,

Please look at the bottom of my post and you will see the times of my MRIs with the rate of growths. My hearing sensitivity is for loud, sudden and higher pitched sounds. If you like, under "Treatments- Radiation" I wrote "Treatment Journal", of my CK treatment. Some of it my be a little wordy but the writting kept me focused. If you have any questions just ask, take care.
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

LizAN

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Re: Alternating between no growth and rapid growth
« Reply #11 on: May 16, 2012, 07:08:07 pm »
Hi Liz,

Please look at the bottom of my post and you will see the times of my MRIs with the rate of growths. My hearing sensitivity is for loud, sudden and higher pitched sounds. If you like, under "Treatments- Radiation" I wrote "Treatment Journal", of my CK treatment. Some of it my be a little wordy but the writting kept me focused. If you have any questions just ask, take care.

Thanks, Ashman.  I looked up "hearing sensitivity" so now I have a better idea of what you are talking about.  I think what I have is "recruitment."  I am wondering if that will go away, when I have translab.  I'm guessing I will have no hair cells left to recruit in that ear.  That would actually be a welcome change.  Lately, when I listen to music, I have to put an ear plug in my bad ear.  Otherwise, at a volume my right ear can enjoy, my left ear hurts too much.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz