To wait or not to wait....

[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.

[JulieAnn]

Hello, I was diagnosed with a very small AN about six months ago. I had a hearing exam after reporting hearing loss, tinnitus, vertigo and periods of instability. My hearing exam showed moderate to severe hearing loss in my left ear, especially at the range of pitch in the human voice. It has continued to get worse. I know this for sure because I can no longer wear my phone headset on my left ear. The tinnitus is constant with loud whooshing in my ear and a low ringing that increases several times per day.

I have an aunt who I know little of her medical history except that she had surgery to remove a brain tumor, then years later the tumor came back. She is deceased now and there is nobody I've been able to gain more medical information on what type of tumor she had, etc. I have many rare diseases in my family and struggle daily with chronic pain and disability, while I work two jobs. Could it be NF2? How should I proceed to rule this out?

When the ENT diagnosed my AN, he said it was very very small and recommended I have a repeat MRI in one year. Meanwhile my symptoms continue to get worse, particularly the tinnitus and hearing loss. Is this a normal followup time frame? From what I've read in the posts it looks like followup might be in 6 months rather than 12. My current medical insurance is a terrible HMO plan through my employer, and since my husband works for the same company, I am stuck with it. This medical plan tries to limit my access to healthcare every chance they get. Yes, they really do and I have multiple examples, so it's not my paranoia. I would like to also add that I was diagnosed 8 months ago with Ehlers-Danlos Syndrome, another rare disease that is incurable and degenerative, heritable, and congenital. It, along with my severe scoliosis and degenerative disease in my neck and spine, and another rare condition, bi-lateral tarsal coalitions, prevent me from using walking, biking, etc. as an outlet for stress. I am at the lowest point in my life right now and just trying to have some control over one medical issue, the AN, if possible.

What would you do regarding the AN? Thanks in advance for the advice.

[ANSydney]

Hi JulieAnn. Welcome the forum.

I would go for a follow-up MRI 6 months after the first. I would not act on the follow-up MRI, but do it again every 6 months for 2 years. I would then have 5 MRIs to determine both any change in size and whether that change is accelerating or not.

I would only deviate if the tumor rapidly grows. When it comes to hearing loss, the best course is observation. Open surgery and radiosurgery just accelerate hearing loss. Nothing can be done for tinnitus. With regards to vertigo and periods of instability, take a look at vestibular therapy. Your brain will naturally compensate for a compromised one-sided vestibular system, but vestibular therapy may help in your case.

Use the next 1.5 years to research this disease and get your MRIs on CD and examine and measure them yourself.

If you do decide to go for treatment one day, get someone independently check the measurements on all 5 MRI. It will be the same person at the same time so a more accurate (comparison) measurement. Don't give them the previous figures as it will be a means for further checking.

[Cheryl R]

Having NF2 means you yourself would have to have ANs on each side or an AN and some other type of brain tumor.     Having a relative with 1 possible AN is not NF2.      A person with just 1 tumor and another family member later having one is not NF2  unless in time you do eventually have the bilateral or AN and another brain tumor.           ANs are not supposed to be hereditary but it has been mentioned on here of some people with 1 having a relative with 1 also.       
    You have more than your share of health issues to have an AN also.     Just make sure you see a dr who has extensive experience with ANs.                           Cheryl R

[JKnotdobbins]

Hey Paul,

I know you are looking to hear from someone who has been on the wait & watch for a while so I am definitely not that guy but certainly understand your dilemma. I was just diagnosed 3 months ago and mine is 18mm. My circumstances are very similar to yours: age 47, blessed my whole life with great health, but now I have slight hearing loss in my left ear. I face the question which is do I take my 50/50 shot of saving my hearing now with retro sig surgery or do I wait & watch knowing that this tumor will deteriorate my hearing little by little? Not an easy choice. I realize I am lucky as I do have options and many on here don't have the luxury of having options, but I have researched this to death and still am torn. In fact, I am scheduled for surgery December 1st and am still considering cancelling and moving to w&w. I know some on here will say wait & watch is the best method for preserving your hearing but I think that depends on how long you plan on living. Even if your AN stops growing altogether it still will deteriorate your hearing.

[jsteph]

I'm 59 and I've been watching and waiting for nearly 3 years. My AN was 1.9 x 1.3 cm a year ago (I'm due for an MRI now). At diagnosis, I had lost much of my hearing on my rt. side, had a couple of vertigo bouts, and had ongoing balance problems. My tumor has been growing slowly, as expected (but not hoped, of course) and I too am at a crossroads. If my next MRI shows the same growth rate as before, I think It'll  be getting to the size where I may need to take intervention.

My Doc at House has recommended watching and waiting (as long as my symptoms were tolerable) as he said I could enjoy the hearing I had remaining as long as possible because, as ANSydey said, surgery or radiation would likely further reduce what hearing I had left on my AN side. So I've waited.

I should say that my quality of life has declined a bit since my diagnosis. I suspect this is probably mostly due to my AN but I can't really be sure. My hearing seems to have remained about the same, as has my balance/wonkiness (I have better and worse days). Really, my balance might be slightly better. But I'm having other symptoms that may not be related to my AN. Unfortunately, life has been demanding and stressful since diagnosis.

To move from watching and waiting to surgery or radiation is of course a hard decision. I don't regret waiting for these 3 years. I've been able to enjoy the portion of hearing I have left on my AN side and have been able to see if I might be lucky and have my tumor stop growing (or magically disappear!). I'm still hopeful that I might get some good news from my upcoming MRI but if that doesn't happen, I'll have to intervene in the next year or so.

My consulting doctor indicated that at 1.9 x 1.3 cm, there was as no danger to health and no compromise of treatment choice or outcome. He did say that I was nearing the point when I should stop watching and waiting. He advised that if/when my AN gets to about 2.2x 1.5, I should act. He said that radiation is an option to 3 cm. 

Hope some of this might be helpful.

[tinab]

JKnobdobbins interested to hear what your decision was.  Did you have the surgery?  I am newly diagnosed with a small 9 mm and still looking at my options.

[Freelander]

Hi All,

To JSteph's point about WW, wouldn't life be grand if there was a test to show whether one has a garden variety AN that grows no more than 2 cm, and matures and stops growing like some plants?   For me it would!  While I meditate and try to control my thoughts, WW is unsettling and distracting, yet the one doc I have seen thus far says WW is the best option for maintaining functional hearing, quality of life, etc., as long as _______  (you can fill in the blanks).  Look, if I can avoid an intervention I will do so, and live with the worries and knowledge.  I am coming up on three years since detection and the three MRIs since then have shown upto 2 mm of growth each time.   My next MRI is scheduled on my 3 year anniversary (April).  The last measurement was approximately 12 mm.    So here is a question:  somewhere someone opined that neuromas stop growing after 4 years.  Please send me a link on that if you have one. 

And just to move the needle a bit, starting this month I have started to make appointments with other AN specialists to get their take on my condition.  I am fond of the ACBD decision making approach:  always consult before deciding.

In the meantime, do as much as you can for as long as you can.

[jsteph]

This thread is a little old but I'll post again in case it might help in some way. I have finally had my fourth MRI after watching/waiting for over 3 years. My AN was getting near 2 cm in length and with continued growth as before, I knew I'd probably need to treat with radiation soon. I also put off getting this last MRI due to financial constraints (yes this isn't good but it is a reality).

My results are: No growth in the 17 months since my last MRI! I know this doesn't mean my tumor won't start growing again but for now it seems to be holding at 19 x 14 x 12mm, a little under the 20mm size where I'll want to eliminate it. My symptoms are tolerable, except I'm having eye pain and blurriness that is concerning. I don't yet know if this is or even could be related to an AN (I had a relatively normal dilated eye exam).

So, for now, continued watching/waiting.

[ANSydney]

Those financial constraints may have been your savior 

[JKnotdobbins]

JKnobdobbins interested to hear what your decision was.  Did you have the surgery?  I am newly diagnosed with a small 9 mm and still looking at my options.

So sorry for not responding until now. After researching everything to death I needed to take a break from being on here all the time. I think this site is absolutely fantastic but I got to the point where I was on here all hours of the night. I chose to go the wait & watch route and not do the surgery. Great news is that the AM has not grown at all, but unfortunately the vertigo & dizziness are increasing more & more.