Scary morning.

[Tisha]

I'm 3 weeks post-CK. Woke up this morning with almost 100% hearing loss in AN ear.  I just had an audiogram on Thursday and my hearing on that side is almost perfect, just 10 db's off at 8000 frequency!  Although it scared me, thankfully I knew this has happened before from reading things on the forum.

Called Stanford emergency (4:30 there time) and got ahold a neurosurgeon (well my DH did I was virtually deaf).  Put me on 6 mg every 6 hours until Monday...then need to call Dr. Chang.

After first 6 mg, several hours later hearing has returned about 40%, but still poor word recognition, but I can hear sounds..water running, etc.

He told me to go get another audiogram Monday and fax it to DR. Chang.

Anybody had these syptoms so soon after treatment?

Tisha

[mk]

Tisha,

I had two episodes of hearing loss, one prior to GK and one 5 months post-GK. It was sudden, with total loss of word recognition (but could still hear sounds). The tinnitus was also awful. I was put on high dose of prednisone (40 mgs) and it came back fully after a few days.
You mentioned the dosage but not the name of the steroids. Did they prescribe Decadron for you?
It is encouraging that you already got some of the hearing back. Since you acted right away you have a very high chance that your hearing will be restored completely.

Let us know how it goes.
Marianna

[Tisha]

Thanks Marianne,

It such a relief to hear your story.  My  hearing is much better, even, after the 2nd pill.  I'm on decadron, or the generic actually.  I was on a low dose several months ago for hypercusis.  It gives me tinnitus which doesn't bother me during the day, but is really aggragavating at night.  I have to take ambien to even go to sleep.  I'll let you know if it comes back to where it was before.

Tisha

[sgerrard]

Yikes! That would scare me too. 

Thank goodness for steroids. What am I saying, they are not much fun to take, but still, if they can restore hearing from a sudden loss, they are wonderful on that day.

I'm glad you acted quickly, and got a quick response from the doctor. Hopefully it will turn out just like Marianna's.

Steve

[suboo73]

hi Tisha, 

Like Steve said, that would scare me too! 
Sounds like you have things under control now after taking quick action.
Thank you for the update!  I continue to follow your story.

My thoughts and prayers are with you.

Sue

[Tisha]

Thanks Steve and Suboo,

I am trying to write down my honest experiences for those following.  I think negative and positive experiences together give a much better overall picture and helps the decision making.  What I'm going to as Dr. Chang when I speak with him tomorrow is why does he think that happens.  What did I do different that day.  Friday I had acupunture.  But the 3 times I had acupunture, 2 times increased my hearing wonderfully, I could hear in noise enviroments and even hear better in my hearing aid ead.

Could it have triggered something this time in a negative way?  Who knows, he said I could continue with acupunture, as it was a non-issue.  Friday night we went up to a small cottage we own, and keep the temp way down.  It was terribly cold evening as the place warmed up.  We don't have a wonderful king bed like home, but instead a cuddle-full sized bed.  I slept all night on my AN ear, which I normally don't do.   Could the cold and pressing on that ear all night do anything?  Verra frustrating to know what causes it.  This morning it seems I'm hearing normal sounds, but haven't spoken with anyone else.

I accidently set the alarm last night thinking is was a work night.  grrrrrr.

[ppearl214]

Hi Tisha,

sounds like some tumor swelling going on... we know these things can occur and you are doing everything right. Your audiogram showed things ok, then the hearing loss. Like you, I had experienced some.... a few mos post-CK... and even last month.  I didn't let it nerve me as I knew it could possibly happen... and understood the risks with radiation.... like you, the dr's immediately put me on steroids (I was on Decadron and even last month, on Medrol Dosepak) and my hearing stabilzed. I can tell you that I had my hearing test this past Friday and I was back to normal at 96% word recognition with my hearing loss maintaining where it was at time of treatment.

Please keep us updated as to what they say... you are doing everything right.. and hang in there. Wishes to you that this calms down quickly.

Hang tough... please keep us updated.

Phyl

[mk]

Tisha,

Hearing loss is not triggered by external factors, so don't worry that you did something "out of the ordinary" or "wrong". There are two reasons for hearing loss: One is damage to the nerve from radiation. In this case loss is usually gradual and irreversible. The second is swelling, that causes reduced blood flow to the nerve, resulting in sudden hearing loss. If the blood flow is restored quickly, hearing can return. My episode of hearing loss happened by coincidence a couple of weeks before my 6 month MRI, and of course I was worried about the swelling. Fortunately the MRI didn't show any swelling, so it was concluded that what caused it was "internal" swelling (I have also heard the term "tumor related edema"), which doesn't show on the MRI. Losing your hearing suddenly over the course of seconds is indeed scary .... but thankfully not irreversible in this particular case.

By the way, is it possible that acupuncture may help by  increasing the blood flow? Also about cold and sleeping on the AN ear, well here in Canada we have our share of cold, and I usually sleep on the AN ear. So I don't think that any of these could have triggered your episode.

Let us know what Dr. Chang says tomorrow.

Marianna

[Tisha]

Thanks PHyl and Marianne,

Your posts did a lot to quiet my nerves.  Dr. Medbury also responded on the CK board and also said that acupuncture has nothing to do with it.  What the acupunture is supposed to do is calm the nerve and help reduce the tissue swelling.  I know it helped tremedously when the tumor was not swelling prior CK, but I'm not sure it's helping right now as the tumor is really reacting. Or perhaps it's helping, but I can't see sense it, who knows.

My balance has gotten better, though.  It wasn't horrible pre-CK, but got worse afterwards.  Now it's actually better than pre-CK.

Word recognition wasn't that great last night, I'd say 50%, it's hard to gauge.  I went to a movie and I only took in about that much.  I only get tinntus in the AN ear when on sterioids, and it's fairly loud at night, thank goodness for ambien.  It's TV static sounding that mask the different pitched ringtones. 

Will let you know what Dr. Chang says today.

Thanks for the lift!

Tisha

[suboo73]

Hi Tisha.

Been thinking about you and hoping things are improving.  Isn't it kul that your balance is better than before?! 
I realize it is one day at a time - i am so glad you will be checking in with Dr. Chang again - looking forward to your updates along the way.

I will think good thoughts for you today and say a prayer.

Sincerely,
Sue

[ppearl214]

Good luck today, Tisha! Hang in there and pls let us know what Dr. Chang says.......

Phyl

[Tisha]

Both my dh and I talked to Dr. Chang on 2 nights (I was in bed already Monday night).  First of all, the group is great.  He was in surgery all day, and I left e-mails and messages with two NP (who were in clinic) and the Dr. secretary.  Between the 3 of them, they got all my information forwarded to him and he called me back after a long and busy day.

My 2nd audiogram showed my hearing was back to normal thru 1000 hz, but at 1500 it dibbed to 30, and at 200 to  50 and then a big old drop to the bottom after that.  He said that was surprised that it was that good after just 24 hours of sudden hearing loss.  It's not typical to see this right after CK, but he's seen it. Generally hearing comes back after the round of steroids.  He's put my on 12M 7 day, then 8Mmg for 4, then 4mg fo 4.  He's also puttling me on some type of blood platelet thinner, a step about aspirin, for a month.  The steroids will the the stuff the does the work, but this might help out if the tumor is just pressing the nerve and it could help with blood flow. He also mention vitamin E and I don't remember the other one "C" for swelling. 

He said it could be caused by the tumor dying and free radicals.  I don't know what that is and will have to look it up.   They can only guess.  It would be cool if it was dying.

He said acupuncture is perfectly fine if it gives me reliefe and they even have a holisic department at Stanford. However, since it's not been giving me any since post-treatment, he suggests I save my money and time until perhaps we get thru his regiment.  Maybe the acupunture is helping with swelling, as Marianne says, I just can't tell.  Maybe that's one of the reasons my hearing came back so quickly.  I have an appt. on Friday, so I have to make up my mind.  The only thing is if you do too much, it's hard to tell what is really working on it.

The steroid is doing it's crappy stuff now after 5 days.  I'm awake at 2:00, even after taking an ambien at 8:30.  I'll be tired today.  I was also full of energy this afternoon.  Great - only 15more days of it!  Ha!

Keep you posted.