Watch and Wait > For those in the 'watch and wait' status

To wait or not to wait....

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pjdatty:
I was dx'd with a 4mm AN in March 2017.  I initially had really bad tinnitus and moderate hearing loss on right side.  Doc put me on Klonopin for the ringing - and it worked like a charm.  But the side effects of Klonopon are awful - unless you enjoy a complete mind meld!.  Ultimately I weaned  off the Klonopin and with some really good hearing aides (Phonak) - and I guess time/and acclamation- the tinnitus is reduced to a very manageable hiss.  I have no other symptoms at all other than the hearing loss. and basically my life is back to normal.    :)

I just went in for a 6 month follow up MRI - a more accurate MRI this time -  the radiologist report said it was 6 mm, but my Doc (Dr. Sami at UC) says it looks the same size and the difference is really within the margin of error etc.  says it really has no growth.  Audiogram shows my hearing hasn't changed at all in 6 months.   I've been on regular aspirin, hydrate like crazy, work out pretty regularly.  Doc says w/w - stay on aspirin come back for an MRI in a year- but he also explained surgery options etc.

And I'm so faced with the classic dilemma....  its so small they could take it out and i have a great chance to stay "normal"...but the risks are there.  Or do I watch and wait and one day go deaf etc on that side and wish I had cut it out at 4-6 mm!  I'm 56 and otherwise have been blessed with good health a wonderful family, a fun career etc. 

Just kind of venting but would love to hear from anyone whose been on the W / W for a while etc.

Tks!

Paul

ANSydney:
Hi Paul,

I'm with your doctor, observation is the way to go.

Active treatment does not improve tinnitus and hearing loss is only accelerated by open surgery and radiosurgery. The best way to keep hearing for as long as possible is to do nothing. https://www.bhtinformatie.nl/pdf/ingrijpen.pdf

Get MRIs every 6 months and see how growth is going. Get the image on CD and examine your tumor yourself. The CDs come with measurement tools, so you can take your own measurements. After 2 years you'll have 5 MRIs that will tell you not only growth rate but trajectory. At 0.6 cm there's plenty of room to move.

As far as act now and reduce potential future impact or wait until there is a compelling reason for active treatment, it's a matter of probabilities. A study has been done on this exact subject https://www.ncbi.nlm.nih.gov/pubmed/18559028

pjdatty:
Thank you so much for the reply.  Its actually 6 mm not cm so that's even better I presume!  This board is a great help. I have read most of your posts and references to research etc.- very helpful.  Since these things grow very slowly, and since mine is only 4-6 mm, and since they normally stop growing after 5 years- I am thinking I have a good shot at just living with it!   Or is my head in the clouds?

As with most people with AN's I have become a research junkie.  One thing I cant seem to find is the definition of extrameatal vs. intrameatal.  what is this distinction?

Thanks for the reply!

ANSydney:
Hi Paul,

6 mm = 0.6 cm, so no difference in size. I like to quote in cm for consistency.

Your assessment is correct. Your head is not in the clouds!

Keep the research up. It will serve you well.

The meatal is another term for canal. So, internal auditory meatus = meatus acusticus internus = internal acoustic meatus =internal auditory canal = internal acoustic canal = IAC. So, intrameatal means the tumor is contained in the internal auditory canal. It's also known as intracanalicular. The tumor can also grow outside the internal auditory canal, or can grow out of the internal auditory canal, into the cerebellopontine angle (CPA). The CPA is basically a space from the IAC to the brainstem through which the vestibulocochlear nerve and facial nerve pass.

In summary, extrameatal means it is, or has a component, outside the internal auditory canal and intrameatal means the tumor it totally within the internal auditory canal.

On an MRI, a vestibular schwannoma often has an ice cream cone appearance. The cone is the intrameatal portion and the icecream is the extrameatal portion.

With regards to serial MRI's it's best to have them done at the same place with the same machine and with the same radiologist analying the images. You can help my doing your own analysis - you'll be much more motivated and you certainly will be the same person doing the measurements. Difference machines give different images and radiologist have been know to get the dimensions wrong. In may case the first radiologist gave completely different measurements to the second radiologist (same place and machine). Then the second radiologist stated "stable". I rely more on my own measurements. After all, it is my life.

MRI measurement error is about 2 mm.

Freelander:
Hi,
That's a good question.  I was diagnosed with a 6mm AN three years ago and as of my last MRI it had grown to about 1cm (10 mm).  Being 68, and seeing a decreasing amount of functional hearing, my concern about waiting has increased. Relative to possible intervention, doesn't a smaller size make sense?   My otologist has suggested waiting until my next scheduled MRI (spring 2018) and if it has grown again to see a radiation oncologist.  Since my symptoms have become more annoying (greater hearing loss, moderate to high tinnitus round the clock, more noticeable tipsiness, and intermmittent facial tingling) I am seeing the radiation specialist next week.  And I will consult others afterwards, I simply need more opinions now.  FWIW, I once had a cardio doc whom I saw for nearly 30 years, who consistently advised that my blood pressure was slightly elevated and that its range did not require more aggressive treatment then the pill he prescribed.  He was and is a kind, caring individual.  Unfortunately, that was not the best advice for me, and I have suffered the ravages of chronic borderline hypertension.  Several highly qualified docs have said had my BP been better treated proactively, my arteries would be in much better shape today.   

Although I am older, I enjoy a highly active lifestyle and balance and mobility are vitally important for me on many levels. I wish an AN is something that diet and exercise can address.   
We are all unique and different.  Consult with others and then decide and make sure you are comfortable with the decisions you reach. 
Hope this helps.

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