Can post-CK hearing loss and fullness sensation improve over time?

[Tumbleweed]

Hi, everyone:

Now 3-1/2 months post-CK, I am beginning to notice mild episodes of fullness in my AN-side ear and slight hearing loss. A nurse practitioner at Stanford assured me this was normal for the first 18 months following treatment and -- here's the interesting part -- that those symptoms will improve with time. I have never before heard of hearing loss reversing as time passes. Has anyone (especially radiosurgery patients) experienced this? Specifically, has anyone had hearing degradation and fullness in the ear after treatment and then had it improve weeks or months later?

Many thanks,
Tumbleweed

[windy]

Tumbleweed,

I had GK three months ago, as of next week.  About three weeks ago, I woke up with fullness in my ear and a very noticeable decline in hearing.  I could not hear well at all on the telephone on my AN side.  It was an obvious change from the preceding days.  By the way, I went into GK with 100% word recognition and only a problem in the high frequencies.  I started a Medrol Dosepak the same day.  I had been warned this might happen post GK and was given a prescription in advance for the problem.  I knew through researching the Internet there was a window of time to restore your hearing through steroids.  Within a day or two the fullness resided and my hearing was noticebly improved.  I went for an audiogram the next week after the Dosepak had been completed.  My word recognition had actually improved post GK!  The higher frequencies were worse, but I am most concerned with word recognition.  So, I was really glad.  The ENT mentioned to me there was a small window of time to restore your hearing.  His statement seemed to confirm what I had read.  He told me I must have already started to have tumor swelling.  He told me it was important to call him again as soon if I had noticed a significant change.  Thus far, I have not had to call.

I hope this helps some.  It is not exactly the same scenario because I was medicated with steroids.  I do hope you improve with the fullness and hearing loss!!

Windy   

[sgerrard]

You might have a look at this post from early this year:
http://anausa.org/forum/index.php?topic=5732.0

I think my ear fullness has been much more subdued the last six months, compared to the first six months after treatment. Maybe I'm just used to it, but I don't really notice it very often now, and it used to bother me quite a bit. My hearing, on the other hand, remains unchanged, and I don't expect it to improve.

Steve

[Tumbleweed]

That's a great thread, Steve. Thanks for the link!

Windy, thanks for your reply and support. I had already asked my docs at Stanford about taking steroids for my mild hearing loss (I've got an emergency stash in my refrigerator which I haven't had to take as of yet), but they said they only prescribe/recommend steroids for severe hearing loss. What I'm wondering is, without taking steroids and several months or more after losing some hearing, can it come back? In other words, the nurse practitioner I spoke to inferred that hearing loss post-CK can be temporary. The thread for which Steve provided a link is the first account I've heard of this happening and gives me hope. Maybe false hope(?). 

Has anyone else noticed an eventual rebound in their hearing after losing some or all of it post-CK? I'm not talking about day-to-day fluctuations. I have noticed my hearing ability fluctuate over a 24-hour period depending on how tired I am and also my diet. I'm more interested here in finding out if anyone has experienced a sustained improvement (rather than short-term fluctuation) in hearing after losing some or all of it.

Thanks,
Tumbleweed

 

[mk]

Tumbleweed,

my understanding after my many  visits to ENT over this last year is that mild hearing loss happens because of damage to the nerve over time. My ENT says that this generally cannot be reversed. My ear on the AN side has a loss of 10-15 db compared to the good ear, which I think is here to stay. As long as you have word recognition though, this is very manageable.

After radiation there are two mechanisms that might cause hearing loss: One is due to direct damage to the nerve due to the radiation. This usually leads to gradual loss of hearing, and is hard to reverse. But the good thing is that it can stabilize at some point, without further loss. My ENT explained that as long as word recognition is intact, even a simple hearing aid can help. Second is due to swelling, which cuts off the blood supply to the nerve. This is the case that can lead to sudden and severe hearing loss, but can be reversed completely with a course of steroids if taken promptly.

I hope that your fullness/mild loss will resolve soon. I too have noticed that all symptoms worsen when I am tired - obviously some sort of nerve overload. I found that taking frequent rests during the day can help.

All the best,
Marianna

[Tumbleweed]

I too have noticed that all symptoms worsen when I am tired - obviously some sort of nerve overload. I found that taking frequent rests during the day can help.

All the best,
Marianna

Thanks for your informative post, Marianna.

I remember hearing somewhere that when one is fatigued, blood flow to the brain is diminished. If true, this would also explain why our AN-impacted cranial nerves -- which are already struggling to get enough blood flow -- cause us increased symptoms when we get tired.

Best wishes,
Tumbleweed

[jb]

TW,

My hearing got worse after CK and has subsequently improved.  It's not back to where it was pre-CK, as I've still lost a moderate amount of high frequency hearing in my AN ear.  But there were many days/weeks when my swelling was at its worst (approx. months 4-7) when I could barely hear the dial tone on a phone, much less carry on a conversation which I can do pretty well now.  I can also understand song lyrics on an MP3 player that I couldn't make out several months ago.  Not sure how much it will improve from here, if any.  I did take steroids off and on throughout this adventure, but have been off of them completely for many months and hearing has remained stable.

Good luck,
JB

[Tumbleweed]

That's great news, JB. Thanks so much for the information and giving me hope.

Best wishes,
Tumbleweed

[Tumbleweed]

P.S. JB, did your hearing only improve right after taking steroids, or did it sometimes improve much later in time, out of the blue?

Thanks,
TW

[Sue]

My hearing has never improved, nor do I notice any fluctuations either.  I've been told several things by different health professionals regarding my hearing and none of it is very encouraging.  I was told that I would lose all the hearing in my AN side from the doctor who worked at the GK center.  I was told by one audiologist that the nerve will atrophy over time, unless it is stimulated, such as using some kind of hearing aid.  I was told by another audiologist that the hearing nerve has probably been denied oxygen because of the tumor and that it is why it is not conducting anything other than a small amount of sound to my brain.  I have lost all word recognition in that ear and some sound gets through, and I am classified as severely deaf in that ear, which is a notch above profoundly deaf.  I am under the impression that it is very rare for hearing to get better, and I am cheering on anyone who is lucky enough for that to happen to them. It will be interesting to see if over the course of years, if people will retain their hearing or if it will deteriorate gradually.  I hope that isn't the case, of course.  For me, it went fast and it's gone for good. But then, I had GK and your question was for Cyberknife.  Don't know if that makes much difference, really.   Thankfully the fullness sensation went away before I had my GK.  And I am very thankful for that. 

Off to bed!

Sue in Vancouver, USA