loss of hearing

[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]

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. 

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

[Janie]

Thanks for your comments - my ENT didn't suggest any treatment at all - I will mention what you said to him, Nicole12. It sounds very interesting.
I am of course interested in salvaging my hearing - because I'm an amateur musician and a GSM technician (in need of 2 ears!)- so I'm been thinking about asking the specialists in the Copenhagen area what they think in September after my MRI results. I haven't received any advise from the Danish team who performs the AN surgery for all Danish patients - my impression is that unless you have really big issues (like vertigo) the Danish team is advising 'watch and wait', sets up their schedule, and that's it - I didn't get the impression on my first(and only) visit with the head surgeon that he was very interested in a dialogue - in fact, he blankly refused to discuss treatment options with me until my AN was bigger!! - it seems that the surgical team isn't advising radiotherapy ?! - there aren't any private hospitals in Denmark which offer an alternative.
So - I've of course been googling all options like crazy - and like you Tumbleweed, would like to have thought that alternative approaches would help.
I have an Alexander technician who also does cranial sacral therapy - after one of his treatments my symptoms stay subdued for a few weeks at a time - I have an idea that my hearing improves temporarily - but this has not been meaured! I have a lot of faith in his work - I think it's keeping me from totally freaking out over all of this!
I find that my ability to hear depends alot on the surroundings I'm in, how stressed or tired I am.  I have the feeling of fullness in my ear, tinnitus or noise, and speech sometimes sounds garbled. It seems that when I'm in a noisy environment, my ear kind of short circuits on me, and I can't make any sense of what people are saying. (It's not possible for me to use my right ear for phone calls anymore.) Also, I have a lot of tension in the neck and shoulder muscles - work on controlling this also alleviates symtoms.
So what do you think - I'm like to hear from Steve or TW - do you have useful enough hearing after radiotherapy?
(BTW Steve, like your hats!)
Thanks to all of you for your replies - it nice to know someone out there understands!

[Tisha]

Hi,
 
I had CK in January with Dr. Chang at Stanford, the same doctor that treated Steve and Tumbleweed.  I agree with everything they said.   My hearing was perfect (puretones) in my AN ear, but after CK I had sudden hearing loss.  Went on Steroids immediately and it came back.  After my round of steroids I went for another audiogram.  My  hearing in the conversational pitches had come back up considerably, but I had lost 5-20 db as the pitches increased.  I will have another one with my 6 month MRI.

I feel like I hear well out of that ear (I wear a hearing aid in the other).  My AN ear is my strong ear.  Sometimes when tired, or especially noise environments I have problems.  But I can sit and watch TV comfortably and hear most everything. 

Good luck with the decision making process.  Tisha

[sgerrard]

Hi Janie,

My experience was that I had a fair amount of hearing loss before treatment - about 50 dB.  Six months after radiation treatment, it was down a little more, and 18 months later, it was down a little bit more again. It seems to be fairly stable where it is now, though it may gradually decline the rest of the way. 

With 65 dB loss, it is not a great ear anymore, but with a hearing aid, I get useful hearing. It helps with hearing conversations and noticing noises and sounds around me, like doors opening or phones ringing. My situation is not helped by the fact that I also have some loss in the other ear. I end up hearing the high range with my AN ear + aid, and the low range with my other ear. My word recognition is fine as long as the source is loud enough. Music sounds okay, but it is not like it was before.

If I could do anything different, I would have gotten radiation treatment sooner, to try and preserve more of the hearing. It sounds like you might have to go out of country to get radiation treatment. I think it is more common in Europe to let the hearing go, and wait to see if the AN gets large enough to threaten the facial nerve, and then do surgery if and when it does.

Thanks for the hat complement.

Steve

[ppearl214]

Same for me. Had CK in Boston (Beth Israel).  A few months post-CK, I had temp hearing loss (down approx 10-15db) due to temp swelling... docs put me on Decadron short term and my temp hearing loss resolved soon after. Now, 3 yrs post-CK, my last hearing test (this past Feb) shows that my hearing is at the same level it was pre-CK (over 92%).

Hang in there.
Phyl

Hi,
 
I had CK in January with Dr. Chang at Stanford, the same doctor that treated Steve and Tumbleweed.  I agree with everything they said.   My hearing was perfect (puretones) in my AN ear, but after CK I had sudden hearing loss.  Went on Steroids immediately and it came back.  After my round of steroids I went for another audiogram.  My  hearing in the conversational pitches had come back up considerably, but I had lost 5-20 db as the pitches increased.  I will have another one with my 6 month MRI.

I feel like I hear well out of that ear (I wear a hearing aid in the other).  My AN ear is my strong ear.  Sometimes when tired, or especially noise environments I have problems.  But I can sit and watch TV comfortably and hear most everything. 

Good luck with the decision making process.  Tisha

[kenneth_k]

Hi Janie.

In Denmark, the specialist have a very large patient database which gives them solid statistics (more than 1000 patients). It is their experience that, in most cases, small tumors doesn't grow after diagnose. And if they don't grow, why suggest radiation therapy?

If hearing deterioates, it will be lost eventually. Trying to preserve hearing through surgery is complicated and risky. Therefore, if the patient has only a small tumor, just watch and wait. It is not worthwhile trying to preserve hearing.

But that leaves the patient with literately no choice, which is very frustrating. My advice would be to tell Gentofte Hospital that you would like to discuss some treatment to preserve hearing, including radiation therapy. If they are reluctant then contact Rigshospitalet and explain the situation.

Gentofte would not treat me initially untill they were sure the tumor was growing. It made me nuts, but when I wrote to them 5 months later demanding advice on how to handle my symptoms (dizziness, mentally off balance) they offered me treatment. Be tough.

Good luck,

Kenneth

[Keeping Up]

I read this a few days - but haven't had a chance to respond.

I am a fellow w&w - also, hoping to do absolutely nothing.  I am also part of the Cdn medical system - which doesn't move too fast either.  (My neurosurgeon consult is the first week of June - I was originally diagnosed in December.)


It is interesting ready other people's comment about how they would have been more aggressive to preserve hearing.  It sometimes make me question my path to watch n'wait  (but that is the path recommended by both the ENT and the radiation oncologist - GK). 

So,  a few days thought - and it really depends on the risk profile and your view of the advantages/disadvantages.

I am pretty much decided to forgo any treatment as long as I have no meaningful symptoms beyond hearing loss/tinnitus/full ear etc and the balance issues remain very mild.  I will likely lose useful hearing but think the likelihood of preserving useful hearing with either surgery or radiation over a longer-term frame as pretty low.  That is my decision - some research will dispute that (in particular CK - not available in Canada) - but is the position supported by the ENT and radiation oncologist.

As a curious question - with a 40db additional loss (and I would assume you probably were already at 15-25db loss as part of the original hearing loss diagnosis), as I understand it, you don't have useful hearing now in that ear.  [anything more than 50db puts you into a not useful category]  So my question - what are you attempting to save with treatment?  Surgery puts you at a huge risk of SSD and radiation may or may not increase the decline, but more than likely won't improve it.  At this point, you have directional hearing which I gander from many on this site is the true 'win' in hearing preservation surgery - it mightn't be useful but at least you know direction.

[Tumbleweed]

Janie, to answer your questions, I had roughly 50 to 55 dB of hearing loss on my AN side in a narrow band ranging from 2 to 4 kHz, before CK treatment. Otherwise, the response on my left and right sides were about the same. At my first post-treatment hearing test, 5 months after CK, I had 15 dB additional hearing loss in the same band on my AN side. Subjectively, it doesn't seem like I've lost any more hearing since then (I'm now 10 months post-CK).

Before treatment, I had intermittent episodes of progressive hearing loss, always accompanied by sensations of fullness in the affected ear. My tinnitus was getting louder over time and was both "ringing" and "pulsatile" (specifically in my case, hearing my pulse in my ear) in nature. I also had constant disequilibrium. Several times each day, I felt like an "invisible hand" would push me so that I would start to fall over to one side while standing.

Since getting CK, my ringing tinnitus has been cut to about 1/3 the level it was before getting treatment and the pulsatile tinnitus immediately disappeared and has not come back since. (This is a very unusual benefit, and shouldn't be expected by anyone seeking radiation treatment.) The "invisible hand" stopped happening -- for the first time in over 8 years -- about six months post-CK. I still have constant but mild disequilibrium, but it doesn't stop me from being active; CK didn't improve that. I had, for about a week, fullness in the ear and hyperacusis (garbled, distorted hearing) on my AN side 4-1/2 months after CK, which is when it felt like I lost the other 15 dB of hearing (hearing hasn't come back but my hearing is no longer distorted).

It is important to realize two things about hearing loss vis-a-vis radiation treatments:
1. At your age, you are likely to have continued age-related hearing loss that might be confused with loss due to treatment. Be sure to see if any additional loss is bi-lateral or not. If it's bilateral (the same decibels of additional  loss in both ears), then it's not a result of the AN or aging. Unless, of course, you have NF-2 (bi-lateral tumors).
2. As Dr. Chang said to me, additional loss after CK treatment cannot necessarily be concluded to be as a result of the treatment. As both your doctor and Kate pointed out, the tumor can continue to degrade hearing even if it stays the same size. And the AN does not immediately die when it's irradiated. It's a process that takes awhile -- the DNA is damaged by the radiation, ending the tumor's cell-division process. As each cell fails to replicate, it dies. This potentially explains why fast-growing tumors (those that go through cell division quicker than slow-growing tumors) seem to exhibit necrosis (tissue death) quicker than the norm. This was true of my fast-growing tumor; my 5-month MRI showed an unusually high degree of tumor necrosis. But I digress. The point I'm trying to make is that even after irradiation, a tumor may cause additional hearing loss before it dies. Was it the radiation or the tumor that caused me to lose an additional 15 dB? No one can say with certainty.

Before I got treatment, I wanted to stay in W&W mode as long as possible. I was afraid that CK (or any other treatment) would decease both my hearing and balance functions. Indeed, this is sometimes the case with radiation patients (degraded balance in the short term, degraded hearing in the long term). During the 8 months in between diagnosis and treatment, my hearing and balance both worsened. In hindsight, I now wish I had gone sooner into treatment (the right treatment -- which for me was CK -- and not just any treatment; making a decision on which type of treatment to get shouldn't be rushed, as it is potentially one of the most important decisions you'll make in your lifetime). I do believe that the less damage you have to cranial nerves before getting treatment, the better they will withstand the necessary trauma of treatment and will have better-preserved function afterwards.

Good luck in your journey, Janie. We're here to help, if you need it.

Best wishes,
Tumbleweed

[Keeping Up]

Every time I post, I come up with more questions ... hearing is such a curious topic.

I read Janie's original post to suggest that her pure tone average (PTA) had worsen by 40db.  As such, useful hearing which has a threshold of 50db is no longer existent.  Now, as I read Tumbleweed's post, it made me think - are we talking hearing loss at one band, or an average.

An average hearing loss of >40db is pretty significant.

PTA is based on the average db ratings at three different levels - 500hz, 1khz and 2khz (it has been awhile, so please correct me if I wrong).  [Need to refresh my background before my appointment next week.]  Beyond those levels - not sure if the human ear really needs that level - but the audiologist test nevertheless.

I have mild hearing loss - which is about 30db PTA - for instance, I have 10db at 500hz (low frequency), 25db at 1khz and 45db at 2khz - for an average of about 25db (it is a bit less than that if I remember correctly - the numbers aren't quite that well round - but it makes the math easy).  At these levels, my ENT wouldn't even begin to suggest a hearing aid (will ask, what is the level that a hearing aid would help me - another one to add to my list.)

Now, at 4khz, I only hear at 65db - so not much hearing at that level - I think conversation is 60db - so if someone spoke at 4khz, I wouldn't be hearing much - thankfully they don't].  I have been told to practically ignore that higher level from a treatment perspective - and isn't counted in the average - as I will assume not a range that is required significantly day to day for someone whose profession isn't hearing related.   The hearing loss of 65db at 4khz doesn't affect my life much (other than I cannot hear the INCESSANT alarm of my messed up washer from the 2nd floor - yeah me!). 

So curious - is the 40db at a range or an overall PTA.  Hopefully, just at the upper ranges and your useful hearing remains usable.

I  could just keep tying on how interesting unilateral hearing loss and brain compensation can be - and how little hearing loss causes the brain to depend so heavily on the 'good' ear. 

Will stop my typing.

Ann

[Janie]

Thanks again for all your comments - with regards to the 'dimensions' of my hearing loss - maybe I didn't get the facts straight at my consultation - I didn't have a very good look at the audiogram myself - perhaps I misunderstood the doctor's explanation? I am contacting the hospital in Gentofte (not the same hospital where I was examined - but the hospital which is the center for AN treatment) and ask for one of the surgeons to contact me and explain what to expect, based on what they have in my journal. I don't expect they will be pushing my scheduled MRI forward, but we'll see.
Reading your comments and researching via the web this weekend, I think I have concluded that the safest course for me is to stay 'watch and wait' for as long as possible.  I think I'm better off learining to live with the thought of impending SSD  - and enjoying my life as is.  (I know musicians who are deaf in one ear and get along fine.)  Tumbleweed, I understand how you feel - the doctors encourage 'watch and wait' and in doing that, we eliminate some of our options. (It is a difficult decision to make - lots of pros but lots of cons, too) Interesting thought - Keeping Up - I have tried 'exercising' the bad ear by plugging the good one and forcing myself to use the bad side - I have done this for listening to music, watching TV, having a conversation in a quiet room with only 1 person to talk to! I don't know if this had had any effect or not! (I 'Exercise' for just a few minutes at a time. )
I also entertain the notion that my quality of hearing fluctuates - and I had my last hearing test on a bad day!
Anyway, unless there are other issues, I will wait for the results of my next MRI -  if the AN is growing, I will want to make a decision about treatment
(leaning towards trans lab)
Thanks again, everybody for your comments. Take care.