Author Topic: How small is too small to remove?  (Read 7873 times)

sempergumby

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How small is too small to remove?
« on: May 04, 2012, 10:47:26 am »
HI...brand new newby...I have AN left side 3mmx4mmx4mm and tinnitus that is 24-7 smoke alarm in my head...pressure in left ear and a sense of vibration, like an electrical pulse.  How big does the AN have to be before I can expect surgical intervention?  I am 58 yrs young and heathy other than the tinnitus and AN....

pjb

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Re: How small is too small to remove?
« Reply #1 on: May 06, 2012, 08:45:48 am »
Mine was 1 cm and had it surgical removed but 3 mm was left behind and should not have. Now I would have left the 1 cm alone after reading many others as we get older they do not grow.  But with the 3 mm I am definitely doing nothing unless it grows and will make a decision but so far W &  W is a good option if it does not bother you that it is there but I believe that small they will not operated I'm not sure what size is their requirements but I do know with the 3 mm my neurologist suggested radiation.

Best Wishes and hoping it does not grow...
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

JWW

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Re: How small is too small to remove?
« Reply #2 on: May 06, 2012, 09:59:40 am »
"as we get older they do not grow".......do we know this for sure? Any documentation?

JW

chance1212

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Re: How small is too small to remove?
« Reply #3 on: May 06, 2012, 11:08:06 am »
I have similar issues..the 24/7 loud tinnitus and the feeling of fullness. Just remember that odds are more likely from what I've been told and read that these will not go away with treatment. Mine is now 1 cm and is growing. When is your next mri?
6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt

chloes mema

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Re: How small is too small to remove?
« Reply #4 on: May 06, 2012, 02:01:58 pm »
"as we get older they do not grow".......do we know this for sure? Any documentation?

I'm here to tell you THIS AIN'T SO! 

I'm 66 years young and mine took a growing spurt just since it was discovered last October 2011.  Mine grew 3mm in 5 months.  All the doctors I talked to said because of my age it won't / shouldn't grow etc.  but it did. 

Karen 
 

Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

sempergumby

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Re: How small is too small to remove?
« Reply #5 on: May 06, 2012, 03:23:59 pm »
I am hoping my tinnitus and AN are related...both on same side and noise has a very ELECTRIC feel about it.  have doctor wanting me to do neoromincs for the tinnitus and I hate to spend the money if surgery is a possible fix or improvement.  My last MRI was April 25 this year.

Mickey

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Re: How small is too small to remove?
« Reply #6 on: May 06, 2012, 07:52:14 pm »
Most likely your tinnitus and AN are related. I was diognosed around 5 years ago but have had tinnitus symptoms for around 30 years.  I`ve done neuromonics around 4 years ago which has helped. I`m W+W and hope to continue that way as long as my AN which has since been stable cooperates. I actually feel alot better since I`ve been diognosed but followed a regimen of good health which can be found in "tips for W+W section". (63, 1cm) Best Wishes, Mickey

PaulW

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Re: How small is too small to remove?
« Reply #7 on: May 07, 2012, 02:12:08 am »
Most internal auditory canals are 4-6mm wide.
Once the AN puts pressure on the nerves and blood vessels the fun often starts.
If its troublesome its big enough to get rid of.
You may want to look at radiosurgery also, the result may not be instant, but it avoids the inherant risks of surgery.
You can also go for watch and wait, but the symptoms may drive you crazy in the mean time.
I chose Cyberknife for my relatively small AN and have been very happy with the results so far.

 
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!

Kathleen_Mc

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Re: How small is too small to remove?
« Reply #8 on: May 07, 2012, 02:17:48 am »
sempergumby:
Do not rush into having surgery if the only reason is to get rid of the Tinnitus, there is no proof having the surgery will remove this symptom and sometimes (depending on outcome in to OR) you will develop tinnitus in the other ear ( I originally did not have this but developed it  almost 20 years post-op).
Think about it from the stand point of all the others things that could happen from the surgery, imagine if you had the surgery, the tinnitus didn't go away AND now you're ssd/have facial issues/eye issues/swallowing issues/balance issues.
What about considering gamma knife etc? Have you looked into this?
When is the tinnitus the worst? Maybe find a better coping mechanism for it, for example: if it's worst when you lie down to sleep play music when you settle to bed, keeping the music on in the house during the day etc.
In terms of how big it has to be before removal the size is not the only consideration, also needing to be considered is location and symptoms of the person.
Of course none of us here are doctor's, you need to discuss this all with your doctor.
Take care, Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

chloes mema

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Re: How small is too small to remove?
« Reply #9 on: May 07, 2012, 08:38:29 am »
Also, Widex has a hearing aid that plays ZEN chimes etc to help distract you from the tinnitus.  I tried a pair on and didn't want to give them back, for me I really noticed a difference.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Chances3

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Re: How small is too small to remove?
« Reply #10 on: May 07, 2012, 11:18:36 am »
Hi Sempergrumby,

Welcome to ANA, I'm sorry you're struggling.  My AN was small, but I was suffering with severe vertigo attacks.  I chose surgery at the age of 54.  I also suffer from tinnitus and it has gotten worse after surgery, but I am trying to find ways to control it.  I'm on a diuretic, I stay away from Nitrites, Sulphides MSG etc.  I stay away from caffeine and alcohol.  I try to get quality sleep.  All of this has helped, not everyday, I still have bad days and better days.  My brother in law is a retired fireman.  Many of them have severe tinnitus due to their exposure to sirens.  He was given a prescription that he claims really helps him.  I am going to find out what it is, see if my doctor will prescribe it, and I will post my results here.
In reference to growth, I think the best person to ask is your doctor.  What I have been told is these tumors do not grow linear.  Meaning, they don't just grow a certain amount each year, but can grow in spurts or even stay dormant.  Again this is not an official medical piece of information, but it is something you will need to check with your doctors.  As far as choosing surgery or CK, or watch and wait, my advice is learn as much as you can and make the very best decision that works for you.  Stay connect to this site, it's filled with great people who understand, and who have a wealth of knowledge as well as first hand experiences.

james e

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Re: How small is too small to remove?
« Reply #11 on: May 07, 2012, 02:15:00 pm »
Your doctor is the only person that can answer your question about how large the tumor has to be for treatment. The answer might vary between surgery or radiation treatment. There have been posters here with small tumors, but they have had very exaggerated symptoms, and they required immediate attention. Others are fine with W&W. Talk to your doctor.

Tinnitus is a big problem for many, even people that do not have ANs. It is a brain problem and not an ear problem. I am SSD from translab surgery and still have tinnitus 24/7. You hear the noise in your brain, not in your ear.

James

Ned

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Re: How small is too small to remove?
« Reply #12 on: May 08, 2012, 06:53:30 am »
I would suggest that you  interview other surgeons and radiologists.  You might still stay with your original plan, but there are varying opinions from doctor to doctor.  My experience showed surgeons most always suggested surgery and radiologists most always recommended radiation.  Good luck.
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

leapyrtwins

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Re: How small is too small to remove?
« Reply #13 on: May 09, 2012, 06:56:48 pm »
Depends on the symptoms you are having - and how debilitating they are.

I'd look into radiation before I'd opt for surgery - but that's your personal choice.  Just my two cents worth.

Also, AN surgery won't stop your tinnitus; I don't think radiation will either.

Lots of people without ANs have tinnitus - and lots of people with ANs don't have tinnitus (I am one).  In other words, ANs and tinnitus aren't necessarily related.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sempergumby

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Re: How small is too small to remove?
« Reply #14 on: May 26, 2012, 05:29:49 pm »
Found out it is location, location, location.  Although mine is small it is in an ATYPICAL location and surgery is being scheduled.  Should have date next week.