ANA Discussion Forum
General Category => Hearing Issues => Topic started by: May3 on February 10, 2009, 10:02:18 pm
-
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.
-
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.
-
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
-
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
-
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
-
Sher,
Do you go on steroids when that happens to you?
Tisha
-
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
-
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
-
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
-
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
-
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.
-
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
-
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
-
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
-
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
-
Tumbleweed,
I often wonder why the conflicting comments and I think Dr. Chang's new assessment might be based on their new study that is coming out. That's perhaps why you just heard of it in December. Does anybody know how to find out when they things finally get published?
Steve, That garbled sound you describe is what I call "distortion". It also affects music, where I can't really hear the melodies, etc. Thankfully it does go away with steroid use. I think the distortion bothers me more than the lower threshold of sound when that infrequently occurs.
May,
From what I hear with Gamma knife around this forum, 50-60 percent is the norm on retaining hearing. However, someone else wil need to answer about the other 50%. For a long time I thought the 20% who lost it with CK, loss it completely, but that is not the case. Most of the 20% who do not retain serviceable hearing just lose some decibles, only a very few lose it all...so that's good news. Could be the same with GK? There are no guarantees, but Dr. Chang did say that you have a far Better chance of retaining your hearing at pre-ck levels if it was already good going in. He put it just like that. To me...I felt it was the best chance I could get. I do believe that by doing nothing if you are experiencing symptom in your facial nerve and numbness is not the best thing. YOu need to maybe ask Dr. Medbury over at Cyberknife forum for a quick response.
Tisha
-
When you say that your hearing was down a bunch, do you remember what it was before Ck treatment?
I thought "a bunch" was the correct technical term. :D
If I am reading the reports correctly, the official numbers for my left ear go like this.
June 2007 (before treatment)
Pure Tone Average (PTA) = 46 dB; Speech Recognition Threshold (SRT) = 40 dB; Speech Discrimination = 84%;
March 2008 (after treatment)
Pure Tone Average (PTA) = 56 dB; Speech Recognition Threshold (SRT) = 55 dB; Speech Discrimination = 76%;
It is not certain how much of that change occurred before or after treatment, which was September 2007.
That's actually more change than I remember, and it doesn't seem like that much to me. That may be because I wear a hearing aid at work all day, and don't really notice a deficit in most situations. Sometimes in meetings I have trouble hearing everyone, but that may be because I am not all that interested. :)
I should be getting some new measurements next month.
Steve
-
I often wonder why the conflicting comments and I think Dr. Chang's new assessment might be based on their new study that is coming out. That's perhaps why you just heard of it in December. Does anybody know how to find out when they things finally get published?
I can pretty much access all the medical literature 8). So I can be on the lookout, if you want me to ;).
As for what happens to the rest 50% after GK, it depends on the study and how "useful" hearing is assessed. As is already very clear from this thread, there are different interpretations as to what "hearing retention" means, therefore the reports will vary. However my sense is that the unlucky 50% do not necessarily lose all their hearing, rather they suffer various amounts of hearing loss and/or speech recognition loss. And as someone mentioned, the more hearing you have going into treatment, the better off you are.
May, numbness and tingling sensation most certainly mean that your trigeminal nerve is beeing affected - this usually happens when the AN has grown further in the CP angle. What is the size of your AN?
Marianna
-
Wow, thanks Marianne. If you have access to that type of published material, it would be great. They told me in January, and they told another Patient in December that a new published study will be coming out soon. I might also ask the NP the next time I e-mail her.
I THINK, but am not positive that the results might be thru 2005. Although that is 3 years ago, I'm sure it takes awhile to accumulate all that data, sift thru it, review it and write it up by 2008 getting it ready. The last published one was 2005, can't remember the when the data was thru...I think 2002 maybe. So this at least will give us 3 more years of studies. We'll see..thanks again.
Tisha
-
Thanks to all for your comments. My AN is 18mm x 11mm. It has remained stable for 2 years with the hearing declining and now the facial tingling and numbness. It has been confusing because some doctors tell me not to treat it since it is not growing. One doctor told me the he beilieves that it will not grow anymore, while another doctor told me that it has become thicker by 20%. Who do I believe? I feel like the facail problems are getting worse. Trying to deciide between Ck and Gk. My hearing is already low and do not want to lose any more.
-
May:
Just because your tumor isn't growing doesn't necessarily mean that it's not damaging your cranial nerves further. That may or may not be the case.
Of course, it's great that it's not getting bigger, because that would likely eventually increase your symptoms or cause new ones. But as Dr. Chang once told me (and as someone else noted in this thread regarding hearing in particular), the symptoms you have going in to treatment largely determine the type and severity of symptoms after treatment. By that measure, you don't want to put off treatment forever. Then again, in Sweden the doctors largely take the stance that one should wait until the patient is deaf before treating (and then they do surgery). There are no hard and fast rules, and it's a personal decision when to seek treatment.
The fact that you're having trigeminal-nerve involvement and symptoms at this point concern me. That's something I would not want to let progress.
As for one doctor saying your tumor's thickness has increased 20%, that's only 2.2 mm for an 11mm AN. Different doctors measure the same AN and get slightly different measurements, as each measurement is taken obliquely, or at an angle across the thickest part of the tumor. That plus the fact that an MRI's margin of error is around 2 mm can result in one doctor saying that the measurements are virtually unchanged while another -- taking his measurements literally vis-a-vis measurements made from a prior MRI -- says there's been a change.
In any case, 18 mm -- while still considered a medium-sized AN -- is getting large enough that it's probably at most a few millimeters away from your brain stem. Involvement of the trigeminal nerve would seem to support that theory, although one would have to see your MRI to conclude firmly that this is the case. If your doctors confirm this close proximity to your brain stem, you may not want to wait too much longer before getting treatment. Of course, watch-and-wait is also not unreasonable when you consider that most of your doctors say your AN has not grown in size.
Steve, you're right, of course, that speech recognition can worsen independently of any change (or not) in speech threshold. I was only trying to point out that the two metrics don't always trend together. In my case, my speech threshold and hearing in one frequency band both worsened 15 dB since getting CK, yet my speech recognition did not (and is still 100%). That doesn't keep me from saying "what?" all the time when people speak too low or in noisy environments. ;) I think my results are due to my not presently hearing any distortion.
Best wishes to all,
TW
-
Thanks for everyone's comments. I have read that CK is easier on the faciial nerves than Gk. I would think that 3 fractions would be easier to tolerate and have fewer side-effects than one dose.
-
From what I have seen there is no statistical difference with respect to effect on the facial and other nerves with the doses that are currently used for GK. The difference that people mention more often is hearing preservation, which is supposed to be better with a fractionated approach.
Marianna
-
Thanks mk. Did GK treatment affect your hearing? How was your hearing before your treatment? One doctor told me that the hearing will last 5 to 7 years after GK. Have you heard anything about that?
-
I went into GK with my hearing intact, other than a 10 db loss thoughout the frequency spectrum. This loss brings me to what my ENT calls "normal" level, as the other ear has above normal hearing. Prior to GK I had one episode of sudden hearing loss, which came back with steroids. About 6 months post GK, I had another incident of hearing loss, again restored with steroids.
Other than that my hearing remains the same. In recent months I have noticed that my tinnitus has been reduced to the point of being unnoticeable, and the "distortion" that I had occasionally has also disappeared.
The stats about long term retention are somewhat confusing, so I am not sure what to expect. I have read stats ranging from 50-75% retention for a 5 year period. I haven't been able to find longer term data. But in all honesty, I do expect that I will eventually have some loss, after all it is an AN that we are talking about. I guess the longer hearing is preserved, the best.
Marianna