Post-Radiation Hearing and Steroids

[jb]

I've been having some issues with my hearing that started four weeks after Cyberknife and was wondering if anybody has had a similar experience.  I lost a lot of hearing within about a 30-minute period, and was put on prednisone which has helped me with this sort of thing in the past (pre-CK).  My hearing improved and stabilized, but as I would try to taper off the prednisone my hearing would deteriorate again.  So I ended up on prednisone for a month, including a really slow taper down, until I finally got completely off of it last week. A few days later, I'm having headaches on AN side, louder tinnitus, muffled hearing, and now I also have some dizziness and balance issues that I haven't had before.  My doctor says no more prednisone unless I have another sudden hearing loss episode.

Looks like these symptoms are all consistent with AN swelling, which is what my doc and the docs at the CK Support Forum think is happening.  My concern is whether the swelling will do permanent damage without continued steroid treatment.  I'm only using ibuprofen now, which isn't working all that great.  I've read a lot about facial and balance symptoms improving with time, but not so much about hearing recovering.  I know it's not desirable to be on steroids for an extended period of time, but what do you do when the swelling is going on for an extended period of time?  Just wondering if others had been in this situation and how they managed it.  Thanks.

[sgerrard]

I am just at five weeks post CK myself, and haven't had a sudden hearing loss. But I have had some increases in pressure, and I'm wondering about the same thing you are. If you don't take steroids, can the swelling cause permanent harm? The fact that steroids can reverse the effect suggests that maybe it is not a permanent thing, but if there is pressure over a longer period, maybe it can cause permanent hearing loss.

My ENT is opposed to using steroids in general, although I did try prednisone for two weeks back before my AN was diagnosed. I have to say I didn't like it much and was glad to get off of it. My current plan is not to take steroids unless I have a sudden total hearing loss or something, but to try to keep the blood flow active in the area. Warm showers and vitamins, I'm thinking. I don't think people usually recover hearing they had lost before treatment, but it seems like many also do not lose any more, or lose only a little more afterwards.

Hopefully your swelling will subside fairly soon.

Steve

[jb]

Hi Steve,
Thanks for your reply.  Prednisone isn't much fun after the first couple of days, but withdrawal has been even worse for me.  I think a lot of my problems were coming from withdrawal even though I was tapered off.  I'm actually back on small alternate-day doses and the headaches and dizziness are gone.  Wish I could say the same for the pressure and tinnitus which seems to come in waves.  Hearing seems pretty stable though. Hopefully the alternate-day doses will get me tapered off without any more incidents.

Sounds like your post-treatment is going pretty well.  Hope your success continues.
Jay

[goinbatty]

Hope the side effects resolve soon for both of you.  Keep us updated. 

[GM]

I have heard of people using a antihistamine to help them...  Have you thought of trying that?

GM

[jb]

I've tried benadryl, but it just seems to make me really tired.  Meclizine (dramamine) seems to help with dizziness and sometimes the ear pressure.  I've seen it mentioned that "cold medicine" helps some people, but I don't know which ones.  Any suggestions?

[sgerrard]

I'd have to say "bah" to the idea of using cold medicines, mainly because I went through the entire pharmacy and prescription counter offerings, before my AN was diagnosed. "None of those worked after four months, eh? Hmm, maybe it's time for a real hearing test, and then an MRI."

I suppose an antihistamine might reduce inflammation and swelling, but they seemed to do nothing for me in those days except make my nose really, really dry. I don't think the decongestants would be expected to do anything at all for inflammation. Aleve, aspirin, or other such pain relievers are probably the most effective home medication.

Personally, I think drinking lots of water, eating well, sleeping well, exercising a little, taking vitamins, and drinking some more water are probably the best things to do.

Steve

[Pablo]

I had the same post-treatment episode. At the beginning - 6 months post)  I did well with just Advil, my doc didn't like the use of Prednisone for the symptoms I had ( full ear ). Then all this went away but at the same time and gradually during the first 8 months I experienced a hearing deterioration of about 12 dB in the upper frequencies - which I assume it is part of the radiation side effects. Then after 13 months post treatment I had the last sudden hearing loss , which also included hearing with dostrortion in some of the upper frequencies. So in this case I took prednisone, I recovered my hearing on these frequencies only by about a third way. Nothing has changed since, may be my hearing is a little bit better now in the sense of the distortion problem (I can tell when my daughter screams). I'm now about 19 months post treatment.

[jb]

I've continued with prednisone since October and my hearing is still down about 15 dB in the 2-8 kHz range.  I had a new MRI yesterday that showed a lot of swelling, so I'm not sure that the prednisone is really doing anything at this point.  The tumor is mostly dark through the interior, though, so the radiation appears to have done its job.  I'm hoping my hearing will recover some when/if the tumor shrinks, but I'm getting some differing opinions on that.