Author Topic: Intracanalicular ANs poll  (Read 1952 times)

DodgeAU

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Re: Intracanalicular ANs poll
« Reply #15 on: September 08, 2018, 07:58:43 pm »
Hello,

46yo male here working in Melbourne AU, recently diagnosed last month with IAC small 6x4x4 mm AN on my left ear.  Had gradual hearing loss over the last 10 years but Jan 2018 felt 50% hearing loss and tinnitus, hence discovered this little bugger.

Went to Neurologist this week and put me on WW for 6 months then MRI on March 2019.

No balance issues just severe hearing loss and mild tinnitus on AN ear. Have issue on identifying where the sound coming from. My colleague on my left side calling my name but I looked on my right side :)

Are you guys doing anything else while on wait and watch? I want to preserve my remaining hearing on left if possible. Just in case my AN grow I leaning towards GK treatment.
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus
                Currently on watch n wait mode

Cityview

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Re: Intracanalicular ANs poll
« Reply #16 on: September 09, 2018, 12:24:20 pm »
Dodge AU

I've been on watch and wait for close to five years with no change in hearing status yet.

I haven't been doing this all along, but for the last nine months or so I've been taking 81mg aspirin.

There is some research suggestive that aspirin may inhibit growth.

I figure while I'm waiting why not give it a try.

I don't think aspirin will save hearing though. There's nothing in the research about that.

I was told radiation would or could rapidly degrade hearing but that may have been advice specific to my case.

Surgery can cause sudden total loss of one-sided hearing so that's a risk too.

In general I'm happy with how I'm feeling so I wouldn't risk that for hearing alone.

After reading so many posts there doesn't seem to be much consistency regarding hearing loss, tumor size, etc. Some people have large tumors with no hearing loss and others have small tumors with a lot of hearing loss so it's hard to advise.

Good luck
« Last Edit: September 09, 2018, 06:31:22 pm by Cityview »
5 years ww
small AN

DodgeAU

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Re: Intracanalicular ANs poll
« Reply #17 on: September 14, 2018, 11:41:10 pm »
Cityview I hope the aspirin do wonders for many and stop the growth of AN. I will ask my specialist about it.
Are you doing scan every year?

Do you know if AN shrinks itself later in life?

For me it's an anxious first 6 month wait.




« Last Edit: September 15, 2018, 04:26:55 am by DodgeAU »
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus
                Currently on watch n wait mode

Cityview

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Re: Intracanalicular ANs poll
« Reply #18 on: September 15, 2018, 04:04:26 pm »
DodgeAU

I can appreciate the anxiety surrounding the diagnosis and feeling like it's hard to wait the 6 months. I've had a lot of stress and anxiety about the diagnosis as well. In general I don't have anxiety but just dealing with the diagnosis and figuring out what, if anything, to do about it. So I sympathize. Some positive things to think about: the tumor may be exactly the same size in six months or it may grow only slightly. One bit of advice, I wouldn't panic if the next scan shows it to be a little bigger. Sometimes when they interpret the scans over years, the sizes can go up and down because of the way that MRIs work.  The imaging is done in "slices" so that can make it difficult to measure, especially smaller tumors.

I do get yearly scans. In some cases I have had more than one per year. I think the first few scans after diagnosis are spaced about six months apart to determine the rate of growth. As I was told, they had no way to know, at the beginning, if the tumor had grown in two months or many years.

I have no information about whether or not they shrink when people get older.

Here is some information about the aspirin regimen. It is not proven yet, but they have found some preliminary, promising evidence so now they are officially doing research.

https://www.sciencedaily.com/releases/2014/01/140124110705.htm

Good Luck with everything and take care.
« Last Edit: September 15, 2018, 04:11:06 pm by Cityview »
5 years ww
small AN

DodgeAU

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Re: Intracanalicular ANs poll
« Reply #19 on: September 27, 2018, 08:24:30 pm »
That's excellent advise, Cityview. I'll keep those in mind. I'm gaining lots of relevant information on this forum.

Almost 3 years ago I went for a MRI scan for my hearing lossand there was no AN found that time. .

My ENT told me that AN will reach a peak size and then it will plateau, which research had shown that as well. but then again every AN is different.

My wait and watch has just started now I have to find out when is the best time to have intervention, or just keep continue observation.

I saw one recent webinar here in forum that if you have dizzy spells could be an indication of a growing tumour. I had this 3 years ago and thankfully no more after that.









« Last Edit: September 28, 2018, 02:54:07 am by DodgeAU »
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus
                Currently on watch n wait mode

Ellen K

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Re: Intracanalicular ANs poll
« Reply #20 on: October 01, 2018, 03:31:05 pm »
Almost 8 years W & W with only 3mm AN in IAC. But Im weird. No real hearing loss, massive balance and dizziness issues, fatigue and brain fog. I just developed double vision over the past couple years too, so there may be something else going on, but MRI looked OK. I also have ear pain and fullness. Go figure!
3mm diagnosed December 2010 when I was 45. Very unusual presentation - severe vertigo, then dizziness daily, now just occasional dizziness, but it can be debilitating some days. No hearing loss! But yes to ear fullness and wonky brain. Watch and wait.

Cityview

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Re: Intracanalicular ANs poll
« Reply #21 on: October 02, 2018, 02:00:11 pm »
DodgeAU

That's excellent advise, Cityview. I'll keep those in mind. I'm gaining lots of relevant information on this forum.

Almost 3 years ago I went for a MRI scan for my hearing lossand there was no AN found that time. .

My ENT told me that AN will reach a peak size and then it will plateau, which research had shown that as well. but then again every AN is different.

My wait and watch has just started now I have to find out when is the best time to have intervention, or just keep continue observation.

I saw one recent webinar here in forum that if you have dizzy spells could be an indication of a growing tumour. I had this 3 years ago and thankfully no more after that.

I think I saw that webinar if it was the Vanderbilt one. I found it interesting the the doctor said that small tumors and those that aren't causing vertigo/dizziness are less likely to grow.
Figuring out exactly how long to be on observation and when and if to have treatment is so variable. My main focus has been about figuring out the hearing preservation part of it – radiation vs. surgery vs. observation.
I keep coming back to the fact that it's very small and I have my hearing so it's hard to treat it now.
There's a lot to consider so I just go with what seems the safest overall.

Good luck to you and I hope things remain stable for you.
5 years ww
small AN

notaclone13

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Re: Intracanalicular ANs poll
« Reply #22 on: November 04, 2018, 12:05:33 pm »
In regard to the aspirin regiment, here is the link to the clinical trial which has started and is recruiting:

https://clinicaltrials.gov/ct2/show/NCT03079999.

However, the ability of aspirin to prevent AN growth was only seen in one study and other groups have tried and failed to confirm this result. Below is the result of a recently published paper that found no correlation:

Aspirin does not prevent growth of vestibular schwannomas: A case-control study.
MacKeith S1, Wasson J1, Baker C1, Guilfoyle M2, John D1, Donnelly N1, Mannion R2, Jefferies S3, Axon P1, Tysome JR1.
Author information
Abstract
OBJECTIVES/HYPOTHESIS:
To determine if aspirin intake is associated with reduced growth of vestibular schwannomas (VS). To determine the prevalence of contraindications to regular aspirin in patients with VS.

STUDY DESIGN:
Retrospective, observational case-control study.

METHODS:
The study utilized a postal questionnaire and telephone interviews to determine aspirin exposure. Propensity score matching was used to control for age, sex, and tumor size. Cases were defined as patients with VS proven to have grown on serial magnetic resonance imaging (MRI). Controls were defined as patient with VS stable on serial MRI. Prevalence of regular aspirin use was compared in patients with growing VS versus stable VS. Absolute and relative contraindications to aspirin intake were recorded.

RESULTS:
Six hundred fifty-three patients with VS were contacted, and responses were received by 67% (220 cases and 217 controls). The mean tumor size was 11.3 mm (9.0 mm and 13.3 mm in controls and cases, respectively). Aspirin exposure was more common in stable VS than growing VS (22.1% vs. 17.3%). However, following matching to control for covariates, aspirin was not found to be associated with VS stability (P = .475). Multiple logistic regression (analysis of variance) found tumor size to be the only factor strongly associated with tumor growth (P < .0001). Ninety-two percent of patients were able to take aspirin, with the majority being at low risk of complications from regular use.

CONCLUSIONS:
This study aimed to examine the relationship between aspirin intake and VS stability. In contrast to previous reports, after controlling for covariates, the findings do not demonstrate an association. Only tumor size at diagnosis appears predictive of risk of VS growth.

So while taking a daily aspirin may be beneficial to the heart, I don't believe it will prove to be of much help in controlling AN growth.

DodgeAU

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Re: Intracanalicular ANs poll
« Reply #23 on: November 11, 2018, 02:29:32 am »
I found an interesting article as to why some people with small AN having severe hearing loss while others with large AN having minimal or no hearing loss...

https://www.medscape.com/viewarticle/856560

https://www.nature.com/articles/srep18599


Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus
                Currently on watch n wait mode