Author Topic: Hoping to save the little bit of hearing I have left.  (Read 1601 times)

daoisthere

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Hoping to save the little bit of hearing I have left.
« on: September 03, 2017, 09:28:36 am »
     I am a 63 year old retired engineer, music composer and guitarist, with a history of cancer survival for the last 27 years.  I received full body radiated that extended upward past my ears...  And now the AN with a 10db hearing loss in my right ear.  My goal is to preserve my hearing. I have a history of scoring to film, mostly video games and documentaries.  I am remotely terrified of losing my hearing.
     The AN is at most 4.5 years which implies a growth of about 2.5mm/year. I am experiencing consistent tinnitus and ringing.  No imbalance or other issues.  Through due diligence I have narrowed it done to Gamma Knife or Middle Fossa surgery.  From what I have read in the studies the opinions are vast. 
     I have practiced yoga, tai chi and meditation for 27 years motivated mostly by the cancer event. I am mostly a vegan. But I do cheat sometimes. I am a Cheating Vegan. 

I joined this support group because I am freaked out. At this point my conclusion is that I will probably loose my hearing in my right ear. Am I thinking straight?

Peace,
Daoisthere

08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: Hoping to save the little bit of hearing I have left.
« Reply #1 on: September 03, 2017, 04:46:22 pm »
Welcome to the forum daoisthere. These tumors do not grow at a steady rate. They grow quick at first, at a steady rate for a while and after 5 years stop growing. Followup MRIs every 6 months will tell you at what rate, if any, your AN is currently growing at.

The best way to preserve hearing for as long as possible is to do nothing.

alabamajane

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Re: Hoping to save the little bit of hearing I have left.
« Reply #2 on: September 03, 2017, 07:40:57 pm »
Welcome daoisthere,,

Sorry for your diagnosis and know this can be an unnerving time for you,,, relax and try to research on here as there are many of us that post and have been in your situation,,,

I might venture to say that if the MRI for the concussion was done without the contrast dye,  it may not have found a small AN ,, so it is possible it existed prior to the last MRI,,, just a thought,,, you don't say why your last MRI was done,,,,

I would just recommend discussing with your doctor the next step and perhaps getting a second or/and third opinion,, it appears to be rather small with few debilitating symptoms at this point so further testing and observation may be prudent,,,

Good luck to you,, as most of us will tell you, there is no " normal" case of these tumors,, everyone is different in their desires to treat or not treat,, and their symptoms,,and reactions to having a tumor,,,
We are here to help and most are not medical professionals,, so our advice is given as just that,, advice from our personal experiences,,,

Jane
 
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Matthew

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Re: Hoping to save the little bit of hearing I have left.
« Reply #3 on: September 03, 2017, 09:14:06 pm »
Hi daoisthere... Alabamajane offered some great advice- every situation is different and there are very few absolutes when it comes to ANs. Take your time, and with as clear of a mind as possible start gathering some good information. I would encourage you to look at information offered by well vetted sources- Vanderbilt, USC, Mayo Clinic, House, Mayfield, Cleveland Clinic, etc. This site is a good primer, and this forum is great for support, but I'd caution against using the stories and opinions on this forum as a basis for your situation, prognosis or treatment decisions. There is one thing you should take solice in- the VAST majority of people treated for acoustic neuromas experience a good outcome no matter which modality (radiosurgery/microsurgery/watch and wait) they choose. Each of those have their own pros and cons. One of the first steps you can take is setting up a medical consultation (It just so happens this forum offers some great info on reputable medical providers!).

In the meantime try to stay optimistic and keep us up to date!
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

daoisthere

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Re: Hoping to save the little bit of hearing I have left.
« Reply #4 on: September 04, 2017, 04:40:36 pm »
Thanks all... And to Alabamajane,

No contrast in 2013 MRI sounds right.  None of my doctors picked this up.  I am grateful that this forum exists. From what I've read the chances seem to be 1/100,000. I believe that prudence is one of the fruits of the spirit.  Food for thought. 

Maybe some additional due diligence before acting.

Peace,
Daoisthere
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: Hoping to save the little bit of hearing I have left.
« Reply #5 on: September 04, 2017, 05:29:39 pm »
Hi daoisthere, I've made a couple of assertions that need evidence.

1) After 5 years, tumors stop growing: from http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf "VS growth occurs within the first 5 years after diagnosis in a limited number of tumors, primarily in tumors with an extrameatal extension."

2) The best way to preserve hearing for as long as possible is observation: from https://www.ncbi.nlm.nih.gov/pubmed/25850598 "Active treatment with microsurgery or gamma knife surgery did not appear to be protective, because patients who were observed had the greatest probability of durable hearing"

As others have said, talk to a variety of doctors and do some research. There are many interesting articles out there, many referenced from this forum. As voron999 has said, consider carefully as there is no undo button ( http://www.anausa.org/smf/index.php?topic=23493.msg979774115#msg979774115 ).

daoisthere

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Re: Hoping to save the little bit of hearing I have left.
« Reply #6 on: September 05, 2017, 10:06:42 am »
Thanks ANSydney...

Your words and additional links are quite meaningful.  The Studies are about 10 years old.  The technology seems to be changing rapidly and worth vetting out.  I am a bit less freaked out.  My tinnitus has a synesthetic aspect to it. My injured ear tries to make sense of it. I hear old Russian Military Brass when I am driving my roadster.

Peace,
Daoisthere   
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: Hoping to save the little bit of hearing I have left.
« Reply #7 on: September 05, 2017, 05:51:43 pm »
Glad I could be of assistance.

The first cited paper is from 2006, so yes over 10 years ago. It's talking about the natural history of acoustic neuromas, which presumably hasn't changed for thousands of years. What has changed is our ability to monitor acoustic neuromas and their growth. CT was introduced in 1965 and MRI in 1977. Allow 10 years for them to become popular and then 16 years for the long-term study and another couple of years to collate and report on the information, the earliest the long-term natural history of acoustic neuromas could have been reported is 2005. So, now we know their growth profile after diagnosis.

The same paper shows that in Denmark, the percentage of patients with tumors under 2 cm that were conservatively treated has slowly increased so that by 2000 95% of ANs in Denmark were observed. The situation is very different in the US!

If you'd like a slightly more recent paper by the same author, which focuses on you're main interest of hearing preservation see https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf

If you'd like to see a discussion about these papers, take a look at https://www.anausa.org/smf/index.php?topic=23249.msg979772795#msg979772795

The second cited paper is from 2015. Hard to get something more recent!

From what I can gather, nothing much has happened in the past 10 years. Gamma Knife radiosurgery was introduced in 1987 and nerve monitoring about the same time. From what I can gather, nothing much has improved since then. When looking at the outcomes of surgery, I asked a neurosurgeon if outcomes had improved in the past 10 years. He said no :-(

ANSydney

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Re: Hoping to save the little bit of hearing I have left.
« Reply #8 on: September 06, 2017, 12:36:45 am »
From what I've read the chances seem to be 1/100,000. I believe that prudence is one of the fruits of the spirit.  Food for thought. 
Actually, it's 1 diagnosis/100,000 people/year. So, if you lived for 1 year, yes 1/100,000 chance. Each year, on average over a lifetime, it's another 1/100,000, so in a lifetime it's more like 1/1000. See the discussion at http://www.anausa.org/smf/index.php?topic=23671.msg979775140#msg979775140

keithmac

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Re: Hoping to save the little bit of hearing I have left.
« Reply #9 on: September 11, 2017, 04:06:45 am »
Thanks ANSydney...

Your words and additional links are quite meaningful. I hear old Russian Military Brass when I am driving my roadster.

Peace,
Daoisthere   

There are far worse sounds!   ;) :)

daoisthere

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Re: Hoping to save the little bit of hearing I have left.
« Reply #10 on: September 11, 2017, 02:33:18 pm »
well... sephardic rancheras!
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

keithmac

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Re: Hoping to save the little bit of hearing I have left.
« Reply #11 on: September 11, 2017, 03:18:09 pm »
well... sephardic rancheras!

I don't doubt you're right...   ;D

 


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