Author Topic: Difficult Decision  (Read 4796 times)

ms34292

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Difficult Decision
« on: July 04, 2015, 07:53:43 pm »
Tumor on right side found in 2010 measured at 1.3cm.  Now in early 2015 it's 1.6cm and shown growth y in last 12 months, last 2 MRI's. Went to USF in Tampa and saw surgeons with excellent resumes and experience.  Basically told that surgery is a 50/50 proposition for hearing preservation but full tumor removal should be obtained. Radiation is also a crap shoot whereby they said studies have shown that while in a majority of cases tumor growth is prevented there are numerous other complications which can occur and of course the tumor is still present.   Also, with radiation hearing loss can and will still occur and they said  studies have  shown that in 10 years the likelihood of serviceable hearing in the effected ear is greatly reduced.  They claim it's time for some action and it's a difficult decision.

By the way I am 61 in excellent health and have NO symptoms whatsoever other than the ear feeling clogged - No ringing in ears, balance issues, headaches NO nothing. Almost like it's a dream.

Any thoughts or suggestions??

thanks

arizonajack

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Re: Difficult Decision
« Reply #1 on: July 04, 2015, 11:46:10 pm »
I was 65 when I was diagnosed with a small AN. But by then I had already lost the hearing in my AN ear so I chose radiation. I had Gamma Knife in January 2013 and I have had no complications since then. You can read my story at the link below.

My first impression about your discussions with doctors is the use of the phrase "studies have shown."

I suggest you read the studies. Here are a few that I've collected about the comparisons of the treatments and the preservation of hearing.

http://emedicine.medscape.com/article/857604-overview#showall

http://thejns.org/doi/pdf/10.3171/2012.7.GKS12783

http://www.ncbi.nlm.nih.gov/pubmed/19050660

http://www.ncbi.nlm.nih.gov/pubmed/19783373

http://www.thebarrow.org/stellent/groups/public/@xinternet_con_bni/documents/webcontent/203563.pdf

http://anworld.com/newbies/LedermanPapers.html#article7

http://www.stlukeshospital.com/workfiles/patient_resources/hospitals/acoustic_neuroma.pdf

When it comes right down to it, invasive surgery and radiation are both crap shoots. There are three types of surgery. One of them (I forget which) cuts the hearing nerve and makes you deaf in that ear. The other two have some varying success in preserving hearing and so does radiation.

You'll need to study all you can about AN treatments and make your decision based on what you think is best for you.

Bottom line, though, time is your enemy since you still have your hearing. Mine went from hearing squeaky, tinny voices to zero in about 6 months.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

ms34292

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Re: Difficult Decision
« Reply #2 on: July 05, 2015, 03:13:27 pm »
thanks for your input and I will review the articles. Yes time is the killer - right now I am sitting with 90% hearing in the effected ear AND REALLY ONLY HAVE LOST SOME HIGH FREQUENCY tones which are no big deal.  You can do nothing and lose serviceable hearing over time, do radiation and have the same time frames  and most likely also lose hearing or try the surgery and hope you maintain the hearing.  In my case with the % of hearing being high I would like to think that I have a good chance of maintaining hearing along with my great health and hopefully quick recovery time.  Either way it's a gamble! Thanks again!

arizonajack

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Re: Difficult Decision
« Reply #3 on: July 06, 2015, 12:23:44 am »
right now I am sitting with 90% hearing in the effected ear AND REALLY ONLY HAVE LOST SOME HIGH FREQUENCY tones which are no big deal. 

The high frequency tones ARE a big deal.

Read the following article about audiograms and the hearing thresholds and you'll understand why.

http://www.hdhearing.com/learning/part2.htm



3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

PaulW

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Re: Difficult Decision
« Reply #4 on: July 06, 2015, 04:49:12 am »
Your tumour is classified as a medium size tumour..
I would thoroughly research the numbers that have been provided to you.
Also the definition of hearing preservation varies, another thing to be careful of.

I think this link may provide you with more information

http://www.hopkinsmedicine.org/otolaryngology/specialty_areas/otology/conditions/treatment.html

and a few more

http://www.ncbi.nlm.nih.gov/pubmed/25077306

http://www.ncbi.nlm.nih.gov/pubmed/25434946

Average of 10db hearing loss at 6 Years
http://www.ncbi.nlm.nih.gov/pubmed/25077312

I am now 5 years post Cyberknife. I had my hearing tested last week. my low frequencies are completely normal, in fact they are better than the average 51 year old. I have lost some high frequencies from 2 KHz and above... Overall my hearing is better than pre Cyberknife
« Last Edit: July 06, 2015, 05:15:22 am by PaulW »
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!

ms34292

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Re: Difficult Decision
« Reply #5 on: July 07, 2015, 04:44:39 pm »
thanks for the articles and info - still the conclusion between the various studies seems to be  that it's a crap shoot between the surgery and radiation long term. Everyone is different and each study can be seen as independent from another due to a zillion variances (age, size, overall health, etc etc.

thanks again