What to do, what to do?

[keepingthefaith]

Hi all, I am a newbie to this board although I used to chat on the Johns Hopkins site. 
As background, I was diagnosed with a 9mm AN in left ear in 2006, however I think I had the AN several years before diagnosis as I had typical AN symptoms.
I have had 4 MRIs and the most recent one (Nov 08) determined that my 4-year tumor had grown by 2mm. 
My hearing continues to deteriorate (confirmed by hearing tests) and am now considering a fractionated CK at Johns Hopkins.  I live in South Florida and since there is a Mayo Clinic in Jacksonville, I am also considering them.
Realize my AN is still rather small by most standards, but not happy with even the minimal growth and wondering whether to preserve my hearing, I should have treatment now???
Welcome and would appreciate any and all comments as I need to make a decision. 

[Tumbleweed]

Tough decision, and there is no easy answer. If you have CK, you may lose a little bit of hearing (10 or 15 dB of loss is not uncommon). But if you're already experiencing progressive hearing loss, you're likely to lose that much (and eventually a lot more) anyway if you don't get treated. Basically it's a trade-off: potentially sacrifice a little hearing by getting treated now in return for saving more hearing overall in the long run. And you might be one of the lucky ones who don't suffer any hearing loss after getting CK. In any case, statistics show that CK offers your best chance for hearing preservation of all the treatments available.

Any other symptoms you have going into CK will likely become slightly worse, if only temporarily. So if you have disequilibrium now, it will likely get worse after CK. But if you don't have vertigo presently (and even if you had vertigo in the past but haven't recently), you're not likely to get vertigo after CK. So if you decide to have CK sooner rather than later, prepare yourself (both mentally and in terms of your work schedule) for potentially having a tougher time with your symptoms for several weeks or months. But again, some people have no side effects from CK, go to work the next day, and just get healthier as time goes on.

I had CK, and I'm very happy with my decision. Knowing what I know now, I wish I'd had it a little sooner. Perhaps then I would've retained a little more of my hearing, as I was losing it gradually during watch-and-wait. But immediately after getting CK, I had doubts as to whether I'd made the right decision, because it really threw me for a loop. (I had an unusually hard reaction to the treatment, and was wiped out for weeks afterwards.) Now I'm feeling quite good and realize my setback immediately post-op was only temporary.

It's all a big crapshoot and a very personal decision. Best wishes for peace and clarity on this journey we all share with you.

Tumbleweed

[Jim Scott]

Keepingthefaith ~ 

I'm going to be uncharacteristically brief and simply state that it would seem prudent to address your relatively small AN now (via irradiation) with the hope and intent of preserving your current hearing acuity, but realizing that by doing so you could lose some hearing, rather than wait and risk having the AN continue to grow, risking facial nerve damage as well as the possibility of further hearing deterioration.

Jim

[Mickey]

Hello! I`m in a simiilar situation. Diognosed in 2007 awaiting my first yearly MRI in Aug.. Last 3 6mos. MRI's came back stable. I`ve just turned 60 and have had symptoms for decades. (12x6mmAN) I would say alot has to do with your age. Somewhere on this forum not to long ago was posted interesting findings about AN's in people over 60 and radiation treatments. It mentioned something like the satistics are pretty close to the same in studies many years after treatment or W+W. Right now I do feel pretty good and would be happy to live like this for the rest of my life. Under similiar circumstances if I was to find a 2mm increase in size it sure be thinking time again. I guess you do all your homework and come up with your own gut feeling. Whatever it is, with today`s technology I dont think you can`t go wrong. Best of luck! Mickey P.S. 2mm in 4 yrs. is a very small amount.

[Larry]

Jim,

You are spot on like usual. keepingthefaith, I am in a similar position to you although my growth went ballistic and almost doubled in size in 12 months. I have SSd so thats not an issue. If you still have some useful hearing radiation treatment would be your best and least invasive treatment.

laz

[leapyrtwins]

Keeping -

I, too, agree with Jim.  If it were me, I'd have radiation and I'd do it before you lose even more hearing.

Just my two cents,

Jan

[sgerrard]

If it were me, I'd have radiation and I'd do it before you lose even more hearing.

I'd have to say it was me, and that's what I did. Mine was only 8mm at the time. Some will say watch and wait some more, and if you are like Mickey, and it stops misbehaving, that is a great way to go. If it is getting into mischief, though, I think it is better to pounce on it. I am 18 months post treatment now, and using a hearing aid, and glad I have some hearing left to work with.

Steve

[suboo73]

Hi Keepingthefaith!  Welcome to the forum - sorry you are part of the AN club, but we are here with you!

I had a Jan. 09 consult at Hopkins and they told me they only do GK (Gamma Knife) and not fractionated anymore. 
(Hope i didn't misunderstand the equipment, omgosh!)  The doctor i spoke to regarding radiation treatment said they don't believe the fractionated made a big enough difference to warrant separate treatments.  Please - if you know anything different or more up-to-date, let me know!

In the meantime, my AN is about the size of yours, but i don't want to lose my hearing either - so i lean towards CK but won't investigate until my next (2nd) MRI.
I also realize that my 2nd MRI will be at a different location (hospital) than the first one, and i am prepared to hear a 'difference' in size, maybe taking into account the different machines involved.

I am no doctor - but have surely been frustrated in the past by misdiagnosis by docs who obviously didn't know AN symptoms.  And so grateful to my sister, who prompted me to go elsewhere - yes, she has an AN, too.

Feel free to send me a PM (personal message) if you want to know more about my Hopkins visit.
My original diagnosis was at UVA - Charlottesville, VA.  They don't have CK just GK - i have not talked to any docs down there about treatment yet.

All my best and thoughts and prayers are with you.

Sincerely,
Sue

PS Tumbleweed - thank you for your words of wisdom - always helpful to me!
(was going to quote one line, but haven't figured out how to do it yet!  omgosh)

[Mickey]

Hi suboo! Very intersting link in the family to AN`s. Do you think its due to heredity or might it be due to something youv`e done similiar? How did your family member handle their AN? As we are w+w its amazing how much info passes thru. Its always good to stay on top of things to make your best decision. It does seem to be very individual for AN patients. Best Wishes, Mickey

[Keeping Up]

Hey Keeping the Faith

You have hit the big question with these small tumors.  I am a newbie and attempting to decide what to do.

Before I run wild with my situation, is your tumor intracanicular - I think that is rather key to my barage.  I am gandering that the majority of people here, in particular those with larger tumors, have CPA tumors - those suckers have more of tendency to grow.  I would gander with your growth rate, you have an intracanicular tumor - these little guys typically grow very slowly.

I will also admit I can't get my head wrapped around radiosurgery - just can't get comfortable with the idea.  I am 37 years old, so age, for me plays a big factor.


So, my question for me if I were in your shoes (which I am not) - since tumor control isn't necessarily an objective (2mm over 4 years, could be easily be minimal growth/MRI normal range reading discrepancy), is your hearing better off with CK or doing nothing over the long term?  If the difference is insignificant between hearing loss with CK versus doing nothing, is any treatment worth even the low risks of radiosurgery?  CyberKnife isn't available in Canada - so it isn't an option.  Much of my opinion is based the research I have done with GK - where hearing preservation rates are much lower than CK.

I have put this one out there several times - 10 year study of Conservative Mgmt of Vestibular Schwannomas

http://www3.interscience.wiley.com/journal/120090445/abstract?CRETRY=1&SRETRY=0

In their study, in a relatively small population of 72 patients but followed on average for 10 years  [I have the full study - my ENT sent it to me.]

All conservatively mgmt tumors - PTA of 45db at the start of the study - 10 years later it was worse by 36db (+/- 21 db)
Intracanicular tumors - PTA of 41db at the start of the study - 10 years later it was worse by 25db  (+/- 16 db)

So, I am in the camp (3 months into this journey - so grain of salt) that if I have minimal growth <2mm, no other symptoms other than hearing loss, I will take the average 25db loss with no risk.  Since I am starting probably closer to a hearing loss of 25db (so very minor), maybe I will get the lower loss of only 16db - and I will be cruising 10 years from now.

Of note, I am also probably more inclined to wait it out with minimal/no growth (i.e. can probably grow a good 10 mm, in small increments, over several years) as I will more than likely only go for surgery (my gut instinct this week), and hearing preservation rates are quite poor with surgery - so I am definitely better off doing nothing with an asymptomatic tumor  than having surgery.

good luck - I will follow your decision with interest.

Ann

[May3]

I went ot Johns Hopkins at the end of Dec. 2008.  At that time they had a new machine that does FSR for 5 days with 60% hearing preservation they said.  I was wondering if anyone has had FSR at Jh.  Also,  I would like to hear more about the article concerning people over 60 and radiation.

[Tumbleweed]

Ann's perspective is valuable, although I personally don't agree with some aspects of it. I share her view that there is no rush to get treatment for an asymptomatic tumor. But keepingthefaith is already suffering progressive hearing loss. That is, unfortunately, more likely to continue than not, in watch-and-wait.

Even an asymptomatic tumor poses risk. There are many people on this forum who had an AN that was asymptomatic (in many cases, at the time undiscovered) when they suddenly experienced the onset of severe hearing loss, balance issues (such as vertigo), or facial symptoms. In my case, I was totally asymptomatic until I awoke one afternoon from a nap to severe vertigo and pronounced hearing loss.

It is Dr. Chang's professional opinion that the sooner an AN is treated, the better the chance that hearing, balance function, and facial-nerve function will be preserved in the long term.

Yes, it is a very personal -- and agonizing -- decision to make, whether or not to seek treatment. All I can say is that watch-and-wait is not without risk, even with a currently asymptomatic tumor. And as keepingthefaith will attest, even an AN that is virtually not growing can cause progressively worsening symptoms.

If it were me, I'd probably avoid treatment until I noticed the onset of symptoms (and might then regret that I'd waited!). I'd seek treatment for progressively worsening symptoms, such as a deterioration in hearing. I think the middle ground -- mild but stable symptoms -- is the hardest to deal with in terms of making a decision. But everyone's different.

Best wishes,
Tumbleweed

[Mickey]

You got to remember Wait and Watch is one of the 3 forms of treatment. It must be done precisely with MRI and a definate game plan. If your over 60 W+W becomes more attractive because of AN`s history of pretty much stablizing. The older you are the more chance of NO intervention according to studies. I know a few W+W over 60 with one now approachig 80 whos had his AN for approx. 20 years stable. Whatever your choice nowadays I think they have come along way in treatment with the right doctors. We are all different personalities and circumstances and must make our indivdual decisions accordingly. Just didn`t want to discount W+W as a treatment which my doctor also recomended to me. Good Luck, Mickey

[Esperanza]

Hello,
Not an easy decision - one which I am trying to wrestle with myself! 
I am with Tumbleweed -   I was asymptomatic until a bout of severe vertigo and profound hearing loss.  If I'd had the chance to do something about the AN before my hearing went - I would not have hesitated to take that chance as once it is gone, it's gone...  time is a luxury an AN does not always afford as they can be unpredictable due to their vascular nature.

I must admit that if I had known then what I know now I would have had it out straight away anyway but it is a very personal decision and there are so many factors which need to be taken into consideration as no two AN's are the same. 
Mine is only small but already 'kissing' my brain stem so although I have some time I will not hang around too long. 

As long as you are getting information which is individualised to your particular circumstances and stay well informed of your options I am sure the right path for you will present itself...