Hearing loss post FSR

[Trish G]

I am 1 month post FSR.  26 treatments.
Last week I noticed a sudden decrease in hearing.  Everything sounds muffled.  Went to my ENT and have a word recognition that went from 92% to 28%.  I was not surpised.

Called the Neurosurgeon and NP said  probably due to swelling.  Suggested steroids to see if hearing will get better.  Asked what I may expect if I didn't take the steroids and told hearing may not come back.  I was leary about the steroids because during tx the radio-onc gave me decadron which I went off of the same week but had to taper for another three weeks.  The decadron made me feel really depressed and I had blurred vision.  Almost impossible to read as the day would go on.

I asked for a dose pack which I have taken in the past for other medical issues without these side effects.  She said, if it works, they would want me to be on it longer.

Has anyone experienced  a Sudden Hearing Loss after treatment  and did nothing and their hearing came back.  It is concerning to think you have swelling in the brain.

For those who had to take steroids, how long?

Also, my ENT does not seem to know a lot about acoustic neuroma treatments and side effects and am wondering if I should be seeing a neuro-otolaryngoloist instead?

Thanks.

[BeckyMax]

I have not had FSR or any treatment for that matter, I'm wait and watch, however, I did have some sudden hearing loss a month ago.  Speech recognition went from 90 to 48.  I immediately started prednisoe, notice improvement starting around day 3, topping out about day 6 then a slight decline after.  I thought it had dclined further than it did but had a new test last Monday and my speech recognition was 100%,.  I have noticed continued improvement in the last week, 2 weeks after stopping the steroids.

I did not have any side effects from prednisone except that I wasn't tired at bedtime.  I did not have the moodiness everyone talks about except the first few days when i would feel sorry for myself and hope I could recover.  Some increase in appetite, but it wasn't bad.  I did manage to gain about 5 lb, but not sure its from that or the fact that i abandoned my diet last week while dealing with other issues.

I wouldn't think of it as swelling in the brain, it is the tumor that is swelling, not your brain.


Becky

[Trish G]

Thanks Becky,

I will keep my fingers crossed .  I like your outcome.

Trish

[ppearl214]

Trish,

I had CK, not FSR, but can speak to this.

Going into my CK, I had approx 96% serviceable hearing.  It was approx 3-9 mos post CK, there was hearing reduction/muffling/ear fullness (much like cabin air pressure on an air flight).  Like your dr, mine also prescribed steroids to help keep swelling/edema to a minimum to help prevent hearing loss. Although no guarantees, in my case, it helped.  I dealt with the short term steroid side affects as I weighed out the short term side affects vs. the long term hopeful outcome and in my case, it worked.   The swelling/edema calmed down and my hearing issues also calmed down.

Now, 6 yrs later, my hearing is what it was going into CK.... approx 96% serviceable hearing.

Now, this is only 1 success story.  As we know, "individual results may vary" and there are some that did lose some hearing post radiation.

The ultimate goal is to stop further growth of the tumor by treatment choice of radiation.  Keeping fingers crossed that your situation calms down, that the goal is reached and that you, too, can follow in my footsteps.  Wellness wishes to you!

Phyl

[sunfish]

Yup, I took a short course of prednisone about 9 months post-CK for a mild decrease in hearing.  It worked (I think), and my hearing levels went back up to what they were pre-treatment.

My hearing preservation has been pretty good so far, although lately I think I've lost a little again.

But everytime I'm sure it's getting worse, a trip to the audiologist usually proves me wrong!  I guess I just get frustrated with not hearing so well on that side . . .

[nftwoed]

Trish;

  I would see the Neurotologist. In their practices, my feeling is ANs are rare enough, ENTs see few or diagnose few ANs.
  Re, steroid. I had 3 SHLs. Straight prednisone gave me problems, but a switch to methylprednisolone caused fewer side effects. You could ask the Dr. about that.
  Would say my 3rd SHL resolved w/o steroid. Some literature reports steroid helps about 50% of SHL episodes. It depends upon the exact cause, of which radiation can produce more than one of.
  But, faithfully follow your Dr's orders, albeit with a couple questions now.

[PaulW]

I had increased hearing loss within 24 hours after CK, after 2 weeks my hearing continued to decline.
I asked my doctor about steroid treatment, straight after CK, and his response was that while steroid treatment was routinely used in the US to preserve hearing, it is debateable as to whether it provides any long term effect for hearing preservation straight after radiation. While steroid treatment is routinely used for sudden sensineural hearing loss, its use immediately after radiation remains unproven and it may not change the long term outcome. My doctor said he was more than happy to prescribe the steroids for me but he had not observed any LONG TERM differences between those that took the steroids and those that did not immediately after radiation.

If my memory serves me correctly he has treated well over 1000 AN's since 1999 with Gamma Knife and Cyberknife since 2007, so what he says probably holds some weight.

On that advise and on further research I chose to not take steroids.
My hearing improved by itself within a few days and got much better within 2 weeks.

In March my hearing went from -20db to -60db overnight. I decided to take steroids, prednisilone, for this and my hearing started to improve with 24 hours, and is now back to -20db again.... Was it the steroids? would my hearing have come back with out it?
We will never know.
When I mentioned decadron to my local ENT he was unwilling to prescribe such strong medication.

While there is evidence that steroid treatment works for sudden hearing loss for unknown causes. Does it actually help long term hearing preservation rates, after radiation, or are the effects short term?

Its still an answered question, and doctors will continue to be prescribe steroids, and a we will continue to take them, just in case it is the best thing to do.. which it might be..

More studies are needed though to prove whether it is effective long term or not.

Nearly 2 years post CK now, and my hearing is better than pre treatment.
My hearing in my AN ear is not as good as my good ear, but is still considered normal,  SDS remains at 100%

[sunfish]

Well said, Paul.  So it seems that at least a few of us have had good hearing preservation with radiation treatment.

[Trish G]

Thanks to everyone for your input. 
I am amazed at the wealth of information on this board.

This is day 5 of the methyl prednisone .  Tomorrow is the last day.   I have noticed some improvement.   Can distinguish many words.  Still has a fuzzy sound but much better than being able to understand. Nothing.

My internest feels I need to be on methyl prednisone for weeks
or months or the swelling will just come right back

Have some been on the steroids for weeks or months?

Thanks
Trish

[windy]

Hi Trish,

I had two bouts of sudden hearing loss post GK treatment. The first came two months after treatment, while the other came a little over 2 years. Like you, I had trouble taking Decadron with blurred vision and also in my case abnormal swelling of my face. I took Medrol Dosepak due to fewer side effects and had very positive results two months post radiation. I went back to 100% hearing recognition at that point and stayed that way for two years. For the sudden hearing loss two years post treatment, I took two Medrol Dosepaks back to back but still staggering the pills in a downward progression (doubled, as in two days of each amount of pills). My hearing had gone down to 50% prior to treatment and then went back up to 70%, but eventually went down to 50% again. My physicians said something similar to what your physician suggested about staying on them for weeks. My ENT and neurosurgeon said they have found if you stay on the steroids longer, even if on a lower dosage, it will sometimes help with the loss, rather than being on a quick higher dosage. I have continued to stay for the most part at a 50% hearing recognition.

I wish you the best in your treatment. Hang in there!

Windy

   

[neuroma_racer]

trish,
was your FSRT on a cyberknife? or some other device?
where and how big was your neuroma?
(i am torn now between single, vs mulit-dose cyberknife)
thanks,
jesse

[Tbanis2463]

I have my radiation treatment on Mon Aug 27th.  After reading the replies its nice to know that positive results can be obtained.  I sometimes have trouble sleeping at night wondering what my hearing on my left side will be after the gamma knife treatment.  Reading posts like this help out tremendously.

[It is what it is]

Tbanis, please let us know how you are after your procedure today. 

Karen

[Tbanis2463]

I just had Gamma Knife surgery about 3 hours ago.  I felt some pain from the helmet after the procedure for about an hour.  I feel fine up and moving.  I get a follow up MRI in 4 months to check progress.  Tinnitus symptoms increased slightly, but I figure that was from the procedure.  I keep everyone posted on my progress.  Thanks for everyones support.

[It is what it is]

Hooray!!  You did it.  Thanks for letting us know how you are doing. 

Karen