Tinnitus and hearing after GK or CK?

[amye]

Hi Everyone;

I am getting closer to making a decision about treatment and I've narrowed it down to GK at UPMC or CK at Stanford. My primary concerns are hearing preservation and not making my tinnitus (a new symptom that I'm really struggling with at the moment) any worse. Can anyone comment on their experiences with this?

Although my AN is small, I'm having trouble waiting and watching because I feel like I'm only getting more symptomatic and my hearing will surely go if I do nothing. However, I don't want new stuff to deal with either... the classic AN conundrum! 

Thanks,
Amy

[Vivian B.]

Hi Amy,

From what I understand, whatever balance you have going into treatment, you will likely have after treatment. Although there have been some reports of imbalance a few months after treatment, but your other side should compensate in any case. Good luck.

Vivian

[ppearl214]

Hi Amy

Ok, here goes.

I had CK in Boston over 3 yrs ago.  the decision was made by my team and me to have my CK "fractionated" over 5 days at 6Gy/day (total, 30Gy.... most CK patients are anywhere from 18-21 up to 30Gy total).  the reason for the "fractionation" was to help preserve my hearing (at time of CK, my voice recognition, etc was at approx 92%).  My personal goal was to save my hearing.  By fractionating, it was to help any surrounding structures "heal" in between treatments if they were to be "hit" by the radiation........

Now, over 3 yrs later... my last hearing test shows my voice recognition, etc, still at over 92%.  Thus, for me, my personal goal was achieved.

the overall feeling is that with GK, many opt for it if their serviceable hearing is at a substantial loss (as well as other reasons, ie: treatment in 1 day vs. numerous days, etc).  For many, some opt for a "fractionated" approach as it may help maintain higher hearing levels post treatment.

Many have noted that within the first 4-16 mos, they may experience a temp hearing reduction that may be treated with a short-term course of anti-inflammatories (ie: Ibuprofen, Steroids ie: Decadron, Medrol DosePak, etc).  the feeling is the that temp hearing loss down the road may be due to internal swelling of the AN, post-radiation.  If you do experience some hearing loss post treatment, speak to your radiation team so they can work with you for a course of treatment to help it out.

Regarding the tinnitus... as we know, there is no true medical cure for it and there are no guarantees of it going away post-radiation. Some here have noted that it had diminished... some noted it has enhanced... in my case, mine remains about the same.

As we know... "individual results may vary.....", so I've shared with you personal experience and what others have noted here on the forums......I hope this helps during your decision making process. We are most certainly here to help!

Phyl

[sgerrard]

Hi Amy,

This boat sounds familiar.

I had CK at Stanford for a small AN for the same reason you mentioned - my hearing would surely go if I did nothing. At 18 months, I have retained some hearing in the left side, enough that with a hearing aid it is useful. The tinnitus has remained the same throughout, and by now I am so used to it that I only notice it at times like this, when someone asks about it and I say oh yeah, I still have that. No new stuff!

Good luck with your quest, I hope you reach a decision that works for you.

Steve

[Sue]

I had GK too.  My hearing was already severely compromised by the time I had my treatment.  I have little hearing on that side.  The tinnitus has actually gotten worse, but it is still manageable or else I've finally adjusted to it that it isn't quite as annoying as it was.  I would rather have it go away, but guess it's stuck there for good now.

I wish you all the best,

Sue in Vancouver USA

[goinbatty]

I had CK for a small tumor.  Hearing only slightly diminished but still on the lower end of normal.  For that, I'm thankful.  Everyone has their own chief concern but with me, it was balance.  I wanted to remain independent.  I also still have one child at home and wanted to make sure I was able to remain active for her sake.  I had only occasional balance issues.  No change there.  The only thing I can say increased was tinnitis but not much and after having it so long, I rarely think about it.  Guess I must have learned to tune it out for the most part.  I've learned certain sounds make it worse so I tend to use an earplug on the AN side when I know I'll be exposed to loud noise....as in NASCAR!!  Yep, already got tickets to Daytona again.  Can't wait!! 
Sandra

[Nancy Drew]

No tinnitus before GK, and none after GK.  Slight hearing loss before GK and no additional hearing loss after GK.  Recently some balance problems, but I think it will get better.  Best wishes on your decision and outcome of whatever you choose to do.  Nancy

[Tisha]

No tinnitus before CK....now I have tinnitus.   It's a soft constant low static.  It doesn't really bother me nor do I notice until I go to bed.  It deosn't stop me from falling to sleep, thankfull.  However, I have worse tinnitus in my other ear and every so often I really miss complete and  utter silence.

Tisha

[amye]

Thanks everyone! Your input is really helpful. Don't know what I would do without this forum...

Amy

[mk]

I am late in chiming in, I missed this thread.

Anyway, I had minimal hearing loss prior to GK, and hearing has remained at the same levels 16 months post-GK. I had some very mild tinnitus on and off before GK - it has disappeared now - except from when I am very tired.

Marianna

[kahekili]

Aloha:

My case started when I felt like my right ear was plugged with water. Went to two Hawaii docs who both gave me steroids to "clear the infection."  never helped.  Ringing started and got worse as time went on.  Finally...ear doc told sent me for an MRI where AN was diagnosed.  I had lost all hearing in the right ear by then and the tinnitus was in full effect.  Saw a neurosurgeon on Oahu and did GK surgery 4 months ago.  Since then...equilbrium is worse as is tinnitus.  Still deaf on right side.  I hate this metallic taste in the mouth.
Prognosis so far is that "no immediate effects expected until about 24 months...hearing will NOT return...Tinnitus will forever be a part of my life...equilibrium expected to return as one side negates the other."  No comment from the neurosurgeon about taste in mouth.  My last MRI (one month ago) "indicates no/little change in size which about the size of a marble."
Just made an appointment with House Ear Clinic 10 minutes ago.  Seeing Dr. Rick A. Friedman.  Anyone know about him?  I want a 2nd opinion about the "2 year" prognosis and also hope to find some miracle hearing aid for this ringing in the ear.  It is driving my up the walls!

Helpless in Hawaii.

[eab]

I'm late to chime in too...
I had GK almost 3 months ago so I still have a lot of recovery time ahead of me.  I went in with little hearing loss and a little tinnitus, so far I am the same.

Good luck with your decision!
Beth

[Nancy Drew]

Hi Amy,

I hope you are doing better.I had a balance test back in July, and I have lost 71% of my balance nerve.Didn't have any balance issues before or right after GK.My doctor said if any issues come up it usually happens around the 6-8 month mark.I was right on target.He couldn't really explain what went wrong with the nerve....just happens sometimes!I just started vestibular therapy last week so I am hoping the balance issues will get better.I figure things could be a lot worse.I am coping and learning the "little tricks" about how to handle balance problems (i.e. hiking with a trekikng pole, walking carefully on uneven surfaces, not getting is a hurry).All in all, I don't regret having GK, plus I can't take it back anyway.I think what happens after treatment is so different for everyone....we are all unique folks with unique ANs!!!Good luck with your decision and please report back.

Nancy

[NE Farmwife]

I had CK back in January at Stanford.  I had some hearing and my tinnitus had become very noticeable since being diagnosed last November when it wasn't really noticeable.  My 6 month hearing test said that things were stable but they tested me different in July than what they had last November.  Anyway, in the two months since then, my hearing has gone downhill.  I can still hear the dial tone on the phone but it is very high pitched--not like the other ear hears it.  If I put the Ipod in my AN ear, I can hear it and understand the words if it is turned up as high as it goes.  I tried a couple of rounds of steroids and it didn't seem to help any with hearing or tinnitus.  However, my bad knee feels great! LOL   I do have another noise that I recently noticed when I am trying to go asleep.  It is kind of an on-off sound that repeats about every 4 seconds and it has kept me awake some.  My face was numb in November and my sense of taste was bad but by the time I had treatment, they were both somewhat better.  Facial numbness and lack of taste still seems to come and go and the rounds of steroids also helped with that.  The good thing about the numbness and tinnitus are that they really aren't painful, just irritating. 

The thing that I notice that is worse and I don't know what the cause of it is.  The outside of my lower ear and the face in front of it are really numb.  I am wondering how numb they really are or is it because I can't hear my touching those areas that makes it seem more numb than it really is.  I think hearing the touch to your ear is just as much a part of touching it as just touching it is.  I poked my ear lobe with a pin and it seemed to be as sensitive as the other ear.  Has anyone else had this reaction?

[ppearl214]

Hi Farmwife,

Answer is yes as others (incl myself) have reported this.

Please remember that you are in a timeframe for potential edema/tumor swelling due to the radiation (ie: you were treated 8 mos ago and sometimes, if anything crops up, it could be between 3-18 mos post radiation).

suggestion is to call the radio team and let them know what is going on. They may recommend a short term course of anti-inflammatory (ie: steroids, etc, even tho' you mentioned you took steroids and your knee feels great , they may prescribe, solely for the tumor edema possibly prednisone, Medrol Dosepak or Decadron), to help keep things in check.

You can also check with the drs on the CK forums (www.cyberknife.com) and see what they say.

Hang in there!
Phyl