Sudden hearing loss and relation to swelling?

[mk]

Last week I had a second episode of sudden hearing loss. My first one was prior to my GK treatment. I felt a sudden onset of fullness in the hear, tinitus and hearing went pretty much down to nothing. I flunked the hearing test and my ENT started me on a megadose of prednisone (40 mgs) right away. After 4 days I think I have regained quite a bit of hearing and fullness is almost gone. Can't say the same for tinnitus, it is like I have an orchestra playing in my ear.

I have seen in older posts that quite a few people have experienced sudden hearing loss before treatment or after radiation and I understand that hearing may or may not come back afterwards. Any recent experiences with that, anyone?

Obviously the hearing loss must be due to swelling, but is this the kind of swelling that shows on the MRI? I don't have any other symptoms or issues that would indicate significant swelling. I remember Tumbleweed mentioned once something about swelling that shows up on the MRI, versus "internal" swelling?
I guess I will figure this out on my upcoming 6-month MRI on Friday - I am so anxious about it.

Marianna

[sgerrard]

I can sure understand the anxiety; sudden hearing loss is very upsetting. Hearing is sensitive enough that just a little swelling in just the right place is enough to seriously interfere with it, so it may or may not show up on the MRI. I think JB had some hearing fluctuation that finally settled down, and I'm sure others have, although nothing recent comes to mind.

If you and your ENT can stay on top of it, hopefully you will experience only temporary losses, and your hearing will stabilize in a few more months. Best wishes for that MRI on Friday.

Steve

[Tumbleweed]

I remember Tumbleweed mentioned once something about swelling that shows up on the MRI, versus "internal" swelling?

Marianna

Yes, Dr. Chang told me that some swelling is internal and doesn't show up on an MRI, although it does present symptoms.

I'm  glad your doctor gave you steroids right away. Dr. Brackmann told me that it completely restores hearing in 50% of the cases in which steroids are administered within 24 hours after the onset of the hearing-loss episode.

Good luck with your followup MRI this Friday, Marianna! Please let us know the results when you find out.

Best wishes,
Tumbleweed

[ppearl214]

Hey Marianna,

At approx 4-6 mos post CK, I had a temporary onset of hearing loss (approx 10-15 db) due to swelling. Dr's noted to me to try antihistimines and OTC anti-inflammatories and for me, it helped.  Hearing issues calmed down after that.  I have heard of this same issue from other radio-patients (here and on the CK Patient Support board) and hope that your situation is much like mine....esp. since you are in the "timeframe" for these things to crop up.   That it will resolve soon and no more worries. Please keep us updated and please hang tough!

Phyl

[mk]

Thank you all for your input.

It seems that prednisone did its job once more. Hearing has cleared almost entirely, although I am pretty sure that some frequencies come distorted.
After my first episode of hearing loss it came completely back, and tinnitus was gone after two weeks of taking prednisone. I hope this will be the case this time around.

I will keep you posted about my MRI results.

Marianna

[Joey]

Hi Marianna - I was just seeing your post - sorry you've been having problems.  Have things stabilized at all?  I know we've talked before, but your episodes sure sound like what I experienced. When do you have your MRI and/or hearing test?  I'll be thinking of you and sending a prayer.  I am feeling just a little paranoid about that happening again to me, too, esp. now that I've completed GK.  It seems to feel a little different everyday, doesn't it?  Take care and keep us updated.   ~ Joey

[mk]

Thanks Joey for asking. Things are back to normal, had an ENT appointment today and hearing is back to where it was (i.e. 10-15 dB loss throughout the frequency range) with 100% speech discrimination. So prednisone worked wonders once again for me. This being the second time, I knew exactly what to expect. And given the sudden loss, this is obviously not due to radiation damage, but some swelling disrupting blood flow to the nerve.

I had my MRI last Friday (have posted on another thread, looks good to me!) and I am expecting my follow up appointment at the GK centre on October 28th. Overall I feel well, and quite optimistic.

Take care,
Marianna

[Tisha]

The swelling issue is what has me so worried.  I'm in W&W and the swelling around the tumor really affected my hearing 2 weeks ago and I was experiencing hyperacusus.  Went on steroids and it was relieved almost immediately and my hearing came back fully.  Now, I'm off of them and as I was decreasing the dosage the last few days, I've noticed the heightened sensitivity to hearing like before.  The Doc says that steroids are not good L-T.  So, I'm going to try OTC right now to see what happens.  However, if I have radiation, and there is swelling, does the swelling last for months, years?   I suppose this is what I need to ask the specialists when they call.  I really worry about this if steroids can't be L-T.

Tisha

[mk]

Hi Tisha,

I have been wondering my self how long the effect of the steroids will last and what to do if I continue having these episodes.
I had my first hearing loss last December, prior to GK. After taking prednisone my hearing was fully restored, and it lasted like this until October when I had my second episode. So there were quite a few months in-between where I was steroid-free.

With regards to swelling, this is not the kind of "external" swelling that you can tell from the MRI (and I am sure about this, because I had my 6 month post-GK MRI a couple of weeks after the hearing loss - there where no signs of swelling). It is more like "internal" swelling, which exerts some pressure on the blood vessels feeding the nerve and it sounds like it must be temporary since it can be resolved with steroids.

There are tons of posts on the other (more worrysome) type of swelling that can be seen on the MRI. And it is important to consult with the doctors about that, ie. if they feel that swelling could potentially cause major problems due to proximity to the brain stem etc.

With radiation you really need to take it one day at a time and hope for the best. Usually most of the side effects and symptoms do resolve over time.

Marianna

[Tumbleweed]

if I have radiation, and there is swelling, does the swelling last for months, years?
Tisha

There was a post about a year ago that included a graph that showed the statistical possibility of swelling post-radiosurgery, but I'm not sure how to find it anymore.

From what I remember, statistics showed that swelling, if it occurs at all, can last for many months and possibly more than a year. It's hard to say exactly how long swelling lasts in any one patient, because it can occur in between serial MRIs. If, for example, an MRI 6 months post-treatment shows no swelling but a followup MRI at 12 months does show swelling, did the swelling begin at month 7, 8, 9, 10 or 11?

The degree of swelling also varies from patient to patient. Some patients have no swelling, others may have mild swelling, while still others (a minority) may see their tumor swell to twice its former size or more.

Best,
Tumbleweed

[sgerrard]

There was a post about a year ago that included a graph that showed the statistical possibility of swelling post-radiosurgery, but I'm not sure how to find it anymore.

It was probably this one, posted by JB. "Swellers on the left, non-swellers on the right." It is one of my favorites, along with his MRI pics. 

http://anausa.org/forum/index.php?topic=6493.msg63049#msg63049

Steve

[Nancy Drew]

Hi!

Maybe this is off subject.  I am only three weeks two days post GK.  I took steroids last week for perhaps some slight swelling.  When I finished the steroids, I thought I was having some hearing issues so went to the doc today for a hearing test that came back the same as before GK....no hearing loss.  I was pretty elated when I found out I had no hearing loss that I might have gotten confused with what the doctor said.  I think he said if you have any permanent hearing loss it will come up later down the road....not immediately after GK.  Can anyone clear this up?  My doc said he only knows of one case with GK where a woman had some permanent hearing loss immediately after GK.....I'm not sure what he meant by immediately.  Thanks.

Nancy

[mk]

Nancy,

it is correct that hearing loss post radiation occurs over time, and can be gradual over the course of years. I have never heard about hearing loss happening immediately after treatment. My understanding is that the more hearing you have going into the treatment, the more likely you are to retain some, or most of it. I also understand that 6 months is the magical number for pretty much everything, that's why they schedule hearing tests at 6 months post radiation.

I also wanted to add that although my hearing is intact on my AN ear, I do believe I have some "distortion" at some frequencies, which sometimes is obvious in very noisy environments (like my classroom for example!). This can sometimes fool you into thinking that you have hearing issues.

Marianna

[Nancy Drew]

Hi mk,

Your post was very helpful.  I think what you said about hearing loss happening gradually over time is what the doctor said to me.  Thanks for clarifying because I was so happy that I hadn't lost any hearing that I wasn't really paying much attention to him.  Only when I got home did I remember him saying something about we will be able to see what happens when you have your 6 months MRI and hearing test.

I have a difficult time hearing in crowds and with background noise.  My AN doc said the only way to check hearing is in the hearing booth so being out in the "real world" is a totally different experience with hearing issues.

Thanks for your reply.  Really cleared up things for me.  I have pretty decent hearing, and I hope there will be no changes down the road.

Nancy

[Tumbleweed]

According to the research I read when I was first diagnosed, hearing loss can happen several years after treatment with GK (or CK). It usually doesn't occur immediately after being treated.

Marianna, a couple years ago I had distortion in my AN-side ear that lasted a couple months. It resolved itself completely (although my hearing worsened a bit) and didn't bother me for a couple years, but has come back ever so slightly in the last week or two. My point is that there is hope that the distortion you're hearing may resolve itself, if only temporarily but for a nevertheless quite extended period of time.

Best wishes,
Tumbleweed