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

What to do, what to do?

(1/3) > >>

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

Navigation

[0] Message Index

[#] Next page