Hearing after CK treatment?

[Tisha]

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

[sgerrard]

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. 

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

[mk]

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  . 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

[Tisha]

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

[May3]

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.

[Tumbleweed]

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

[May3]

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. 

[mk]

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

[May3]

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? 

[mk]

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