Hearing after CK treatment?

[May3]

I was told recently by CK doctor that all patients who have CK treatment have some hearing loss.  I was  wondering if this is true?  I thought CK treatment was supposed to preserve the current level at 75%.   Thus, I was confused by this CK doctor when this statement was made. 

[Tisha]

I don't believe that is true.  Hearing preservation at levels 1 and 2 remain at 75%-80% (serviceable hearing, or my understanind normal conversational hearing without aids).  You have a better chance of being in the group if you already have good hearing going in.  Of the 20% who lose some hearing, the average hearing loss is 12db.  Only a very few lose their hearing altogether.

This is how it was explained to my by the Stanford docs, or at least how I "heard" it.

[sgerrard]

Pretty much any statement about "all patients" will prove to be inaccurate when talking about AN patients. Results will vary. I have seen post CK reports of hearing unchanged after 5 years, of significant hearing loss in the first year, and various results in between. Mine has stayed at essentially the same level as before treatment.

Steve

[ppearl214]

Hi May,

By fractionating the CK treatments (or other forms of radio AN treatments), it is to help the surrounding structures from the radiation and in laymen's terms, help to be gentle on the hearing nerve. Like Steve mentioned, I have heard from all different angles... some hearing saved, some not. I am one of the blessed ones that saved all of (well, 96% as of my hearing test last Friday) my hearing.  My treatment was approx 3 yrs ago.

Nothing is guaranteed, as we know... but many that had CK are noting some kind of serviceable hearing preservation.

Phyl

[sher]

Hi May,
I am 5 months post CK and my hearing comes and goes... but almost always comes back to where it was pre ck. I haven't had a hearing test yet, but do have some swelling per/MRI so I think the swelling is effecting the hearing. I am hoping that it will be the same as pre CK some day.
no worries...
Sher

[Tisha]

Sher,

Do you go on steroids when that happens to you?

Tisha

[sher]

Tisha,

No, I have not taken Steroids yet at all. Right now I am having some change in hearing and more swelling, I can tell.. but trying not to take Steroids. So far managing it with Ibuprophen. My doc is not a fan of steroids. He gave me a prescription for them, because I asked him to, but I am really trying to get through without. Let me know if I can answer any other questions. You are welcome to call me if you like. Just let me know and I will give you my number.
Hang in,
Sher

[Tumbleweed]

I don't believe that is true.  Hearing preservation at levels 1 and 2 remain at 75%-80% (serviceable hearing, or my understanind normal conversational hearing without aids).  You have a better chance of being in the group if you already have good hearing going in.  Of the 20% who lose some hearing, the average hearing loss is 12db.  Only a very few lose their hearing altogether.

This is how it was explained to my by the Stanford docs, or at least how I "heard" it.

Dr. Chang (at Stanford) is also my doctor. He gave me a slightly different explanation. When I last saw him in December, he told me that my 15 dB of hearing loss at one frequency (since getting CK) was not unusual for CK patients (and that I might have it eventually rebound if the cause is temporary swelling of the tumor). When I said that seemed to contradict the general consensus that  about 75% of CK patients retain their hearing at pre-treatment levels, he explained that "hearing preservation at pre-treatment levels" is considered to mean no change vis-a-vis the hearing class you belonged to before treatment. That is, if for example your hearing falls into class 1 categorization before treatment and you lose only 15 dB of hearing after treatment, you're still likely to be in class 1 (because each class covers a fairly wide range of hearing acuity) and so, by that rationale, your hearing is virtually unchanged.

I have to admit, I was a little bummed to gain this nuance in understanding only after choosing and undergoing my treatment, but then again I wouldn't have done anything different had I known this beforehand. I still think CK gave me the best chance of preserving my hearing to the greatest degree possible.

Best wishes,
TW

[Tisha]

Ahhh, thanks Tumbleweed.  It wasn't explained like that to me, as it wasn't to you before December.  Yes, a little of a bummer, but I wouldn't have done anything different at all.  Right before my treatment for the first time, my low frequencies dipped out of the normal range, so I knew I didn't wouldn't have W&Wed at the point.  Puretones came back to the normal range after sudden hearing loss and steroids, but I'm still on steroids and don't know the end impact of that at all yet.

Thanks for explaining this all more clearly...

Tisha

[mk]

Ohh, this is interesting, thank you Tumbleweed for the exaplanation. It can also explain the variations we are seeing in different studies, since everyone interprets "no change" differently.

In any case, staying in the same "class" seems to be good enough, I will take it, thank you very much. After all, having an AN I cannot expect that my hearing will not be affected at all. And of course even a few db of hearing loss are not such a big deal, provided that speech recognition is retained.

Marianna

[May3]

AFter Ck treatment, did you speech reception go down also?  Even though I have low hearing level, my speech reception is at 92% and don't want to see it go down.
I think that I am on the bottom of Grade level 2 for hearing.  I am wondering that Ck treatment will drop my hearing to below useful hearing level.

[Tumbleweed]

I assume by "speech reception" you mean speech recognition. If I remember correctly, my speech recognition didn't go down. However, as Dr. Chang also explained to me in December, the speech threshold is the more important metric. Basically, as your speech threshold deteriorates, the audiologist must raise the loudness level of the audio in your headphones. At the increased volume, you may have equal recognition of words as you did before. But that doesn't negate the fact that it must be louder in order for you to recognize the words.

My speech threshold worsened by 15 dB. So, yeah, I understand what someone's saying to me just as well as I did before treatment, as long as they speak louder.

Depending on whether hearing ability worsens in the same frequency range as that which enhances speech intelligibility, that determines whether or not your speech threshold also suffers.

CK is not a silver bullet, and practically nobody gets away unscathed from this disease. But I still think it's the best option for preserving hearing as much as possible, if not completely.

Best wishes,
TW

[sgerrard]

I think there is something besides hearing level involved in speech recognition. Even with the volume turned up, I still hear some words garbled during a hearing test. On one occasion  I heard a word spoken loud enough, but could not for the life of me make out what it was, so I said what it sounded like - "AFLAC." For me it seems like a certain frequency range gets garbled, so that some people's voices are clearer than others, depending not on how loud they speak, but in what range.

With both the cochlea itself and the hearing nerve subject to possible damage from cut off blood supply and other AN mischief, I think it is fairly common to get garbling along with loss of sensitivity. A hearing aid or audiologist's test equipment can amplify to over come loss of sensitivity, but they can't straighten out garbled sounds.

Steve

[sgerrard]

AFter Ck treatment, did you speech reception go down also?  Even though I have low hearing level, my speech reception is at 92% and don't want to see it go down.
I think that I am on the bottom of Grade level 2 for hearing.  I am wondering that Ck treatment will drop my hearing to below useful hearing level.

There is no reason to think that CK would drop your speech recognition to below a useful level, although anything is possible with an AN. My recognition measured 88% before, and 80% afterward, or there abouts. The test is pretty approximate anyway - one word missed can cost you 4 points. My hearing level was down a bunch before treatment, but it has stayed nearly the same, and with a hearing aid is still useful to me.

Steve

[May3]

Thank you for your comments.  When you say that your hearing was down a bunch, do you remember what it was before Ck treatment?  I have talked to Dr. Lunsford in Pittsburgh about GammaKnife treatment.  He said that I have a 50 - 60% chance of keeping my hearing at the exact same level as it is right now.  I am assuming the the other 50% lose their hearing.  I am confused as to proceed with cyberknife because I have been have facial tingling and numbness.  I do not want things to get worse even thought my MRIs since diagnosis have shown the AN to be stable