Hearing loss after radiation

[windy]

I was hoping to get some input from those who have lost hearing after receiving radiation treatment.  I have gone from 100% word recognition down to  50% word recognition per my hearing test earlier this month.  My hearing loss seemed to come quite suddenly, 16 months after Gamma Knife.  I now have constant loud tinnitus and noticeable problems hearing.  I have not had these issues previously until early this month.  After the Medrol Dosepak, my hearing went up to 70% word recognition according to my ENT at my last visit.  However, I had a different tech this time so my ENT thinks the results may be somewhat skewed.  It seems since I have been off of the Dosepak, I have now regressed in my hearing again and have now added dizziness and some intermittent ear pain.  I have not had dizziness problems until this week.

I e-mailed my treating physcian for the GK and was told symptoms such as mine should be transient in nature.  I thought hearing loss was not transient in nature.  Am I correct?  He told me to make sure I did not have a head cold and if so to try Afrin and a decongestant.  I am pretty sure three and half weeks of hearing loss is not a cold.  I have no signs of an illness.

For those who have experienced hearing and balance issues, have any of your problems been transient?  Did you hearing come back and did your balance issues settle down?

I have an appt. tomorrow to see the ENT again.  I don't know if I should ask for another round of the Dosepak or just let the symptoms continue.  I just got off the Dosepak less than two weeks ago.

If you can offer any advise, I would greatly appreciate your input!

[sgerrard]

Hi Windy,

I think most swelling symptoms after radiation treatment are transient, and I have heard of cases where hearing went down and came back up. But sometimes hearing loss is permanent, as it seems to be a sensitive nerve and easily damaged. I think I would try another Dosepak, just to see if helps. If it does, that would suggest that the symptoms are from swelling and will turn out to be transient.

My hearing declined some more after treatment, but only gradually over the first 12 months. It has been fairly stable since, though I suspect it will end up fading away over the coming years. Not really the same situation as you have now. I would guess the dizziness and ear pain are transient, and will go away in time.

I hope it goes well for you.

Steve

[Tumbleweed]

So sorry to hear of your travails, Windy. I had some hearing loss beginning about 3 or 4 months after CK treatment, and my dizziness increased about 15 to 20% (subjectively) immediately following CK. Dr Chang told me my hearing might come back if the loss was due to the tumor swelling. My tumor did, indeed, swell about 33% in volume by the six-month mark (but has since shrunk dramatically).

It took about six months for my dizziness to subside. Now, at 18 months post-CK,  my balance is subjectively about 50-70% better than it was before getting CK. I've also had about a 15 to 20dB improvement in my hearing in bass frequencies over the past year. However, my high frequencies remain about 15 dB lower than they were before treatment.

So, there is hope that your hearing will return at least partially, if not fully. As for the balance issues, these are quite likely to go away. According to Dr Chang, increased balance problems after CK are usually transient in nature (and, of course, GK is very similar to CK).

Steroids may help. I've taken 1200 IU of vitamin E every day for the past 15 months or so; I don't know if that helped me regain some hearing or if it was just coincidence, but some research supports that it can reverse sudden sensori-neural hearing loss in a significant portion of patients.

I hope you rebound quickly and fully. Hang in there!

Best wishes,
TW

[windy]

Thanks for your replies Steve and TW!  I really appreciate the knowledge you bring to the forum.  It is good to discuss various issues with those who have experienced similar issues.

I would have replied earlier, but was caught up in New Year's gatherings!  Happy New Year to you!!

I had my visit with the ENT again on New Year's Eve.  My hearing had gone back down to the 50%.  He said it was higher after the steroids at 70%, back was now back to where it had been prior to the Dosepak.  He advised me against the steroids as he said it would only help temporarily as demonstated by my hearing decreasing as the steroids wore off. 

I did decide to skip the second round of steroids.  I have had to take them several times in the 2009 year and felt like it was best to not take them less than two weeks after I was off of them.

I do hope this is transient as my GK physician stated it most likely is going to be....  However, this has been going on since December 3rd, so it has been about an entire month.  My ENT said he since he did not handle GK, so he did not know all the phases one goes through.  He said he guessed it was possible to have hearing return but he didn't really know because he did not normally handle patients who have had GK.  He stated it would be a good idea to consult with a neurosurgeon, however, my neurosurgeon only reads my MRI's since I had GK elsewhere.  I can't consult with him for any problems that arise.  I am quite grateful to my ENT as he has tried to help me in any way he can in spite of his lack of GK knowledge. 

If hearing returns as suddenly as I lost it, believe me I will post ASAP!  Thanks again for your kindness and for sharing your knowledge! 

     

[mk]

Hi Windy,

sorry you are having problems with your hearing.

My ENT, like yours, is not a specialist in ANs, but a really good ENT - I trust him because he has already saved my hearing twice by reacting promptly. From what he has explained, my understanding is that there are two causes for hearing loss: one is from nerve damage itself, which usually causes a gradual loss and cannot be recovered. The other one is due to some pressure due to swelling or reduced blood flow - this it the type that causes a very sudden loss, but can be recovered if treated promptly by steroids.

I tend to fall in this second category - actually just experienced yet another episode of very sudden hearing loss (meaning going from almost perfect hearing to nothing in less than 24 hours), three days ago. This is my second post-GK, and third overall. Fortunately, I was armed with a "just in case" Prednisone prescription that my good ENT have provided, and started it right away. Within two days, my hearing has already improved considerably.

It is hard to say what has caused your hearing problems, but from what you are saying the reduction was a bit more gradual - if the steroids didn't take care of it right away, I think that you made the right decision not to take them any more. Let's hope that even if it doesn't improve, your hearing will at least stabilize - if you have word recognition left a hearing aid can help. I also found during all these episodes of hearing loss, that even having some hearing, without word recognition helps enormously in terms of directionality.

Best wishes,
Marianna

[windy]

Thanks Marianna for the information.  Actually, my loss came quite suddenly in December.  Up until December, I had very little problems hearing.  I have always tested with 100% word recognition.  I wonder if my 10 day delay in taking the steroids caused the loss to be permanent.  I guess I will never know really.  I write this to urge those who suddenly lose hearing to act very quickly with steroids in regard to the loss!