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

loss of hearing

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Janie:
Hi everyone - this is Janie from Denmark - haven't been writing any posts for a long time - no news is good news! Was at the ENT Monday and 'flunked' the speech discrimination test on my AN side - and the doctor said my hearing is worsened by 40 dB - (which is a lot).  There were 2 doctors in to take a look at me and check my files - they both said not to worry - they have scheduled me for my 3rd MRI in September. Their explanation is that hearing loss is common even though the AN doesn't grow.  They focused on what's still good - my balance is good, I'm still working full time, no dizzy spells, facial nerve problems, etc.  I consider this good news, but still feel a litte speculative. I am hoping to be a W and W'er as long as possible. Any advise or consulation? Does anyone have some really good links about endoscopic surgery? - it's not even mentioned in the Danish AN web site.

Nicole12:
My ENT has used two techniques to help restore some hearing.  1) oral prednisone for 10 days; and then later, when it happened again 2) inserting a tube (after making a lasered hole in my eardrum -- no pain) and inserting the Silverstein Microwick into the ear -- in which I put 3 drops of dexamethasone for 3 weeks.  Both methods have helped diminish the inflammation in the inner ear.  Why the inflamation -- well it seems they don't exactly know -- has to do with the release of some protein caused by the AN -- well something like that.

After 3 weeks they like the hole to heal (if the wick and tube are kept in too long, the ear drum sometimes doesn't close up).  Both methods brought back my hearing 25% both pure tone average and speech discrimination, which is not great, but much better.   This has been at the Silverstein Institute in Sarasota, Florida, Dr. Rosenberg.

sgerrard:
Hi Janie,

I think hearing loss is very common with ANs, even with minimal or no growth of the tumor. You may lose more if you watch and wait, but if everything else is okay and it is not growing, it is safe to keep waiting. Are you concerned about the hearing loss, or hoping to stop it? If you want to preserve hearing, it is probably better to act sooner rather than later.

Steve

Tumbleweed:
Janie, FWIW, I concur with Steve's opinion. Dr. Chang (neurosurgeon at Stanford, who has also treated hundreds of patients with CK) told me that the longer one waits for treatment, the greater the risk of hearing loss. The problem is that CK, GK, and FSR radiotherapy -- as well as surgical resection -- can all potentially cause hearing loss, too, although it's my understanding that radiation treatment(s) usually cause only mild hearing loss (and sometimes no loss at all). It all comes down to whether you're willing to risk a little bit more hearing loss sooner in return for preserving more hearing in the long run. Dr. Chang also told me it's not uncommon for CK patients to lose about 15 dB of hearing on the AN side soon after treatment, but that's typically all the loss amounts to.

Ending W & W was the most difficult decision I had to make regarding my AN, so I empathize with you. And you may very well decide to continue W & W; that's your decision to make. But I do believe that treatment -- specifically radiotherapy -- offers  you your greatest chance of long-term hearing preservation at roughly the same level you currently have.

Best wishes,
TW

Kate B:

--- Quote from: Janie on May 14, 2009, 02:56:12 pm ---Was at the ENT Monday and 'flunked' the speech discrimination test on my AN side - and the doctor said my hearing is worsened by 40 dB -(which is a lot).  ... Their explanation is that hearing loss is common even though the AN doesn't grow. 
--- End quote ---

The fact that the tumor can maintain its size and yet hearing loss can occur was one of the things that I found most intriguing when I started doing my research. It defied what logic screams at you. 

When I consulted with Dr. Brackman, and it is also a part of the House website,  he indicated that the better the hearing going in, the better the chance of hearing afterword.  That was true in my case. That is one of the considerations when determining translab or middle fossa surgery.

Kindest regards,
Kate

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