Tumbleweed's 28-month followup MRI and audiogram

[Tumbleweed]

Thanks, Jim! I hope you enjoy the holiday, too!

I changed the AP measurement of my AN to 11 mm in my Profile signature to reflect Dr. Chang's reassessment. Looking at my scans, my own measurement along the AP axis is 10 mm (my other two measurements [transverse and cranio-caudal] are exactly the same as what Dr. Chang measured). So I'm confident in Dr. Chang's 11mm AP measurement.

There seems to be a lot less mottling (signs of necrosis) in my current scans compared to in the ones from a year ago. I guess the ol' sucker is now mostly scarred over and done. Dr. Chang thought the remaining mottling was simply parts of the tumor that are less vascular (i.e., there are less blood vessels through those sections of the tumor, so the gadolinium doesn't get transported to those areas to "light them up").

Looking at the long-term trend since I got CK, the dimension I was most hoping for shrinkage in after treatment has after all shown exactly that. My transverse measurement was 21 mm at the time of treatment. 28 months later, it is now 16 mm. As a result, my AN is no longer pressing on my brain stem. Only you folks on this forum can truly appreciate how happy that makes me. 

CK has been a huge success for me, and I am forever grateful to Dr. Chang, Stanford University Medical Center and the people on this forum, whose information and success stories partly led me to choosing CK.

Best wishes,
TW

[free2be]

TW,

Glad everything is looking good and you got all your questions answered. Sorry the hearing may be an issue, though with the difference in the testing I'm a little confused. Can you be sure of the new difference? Anyway, congrats on all the good news.

Connie

[Tumbleweed]

Hi, Connie:

Dr. Chang wasn't so certain the results of the audiogram were meaningful because of the difference in reference levels. He wondered if the pure-tone tests were also taken at a lower level (that is, like the speech-recognition tests were). I'm pretty sure those pure-tone tests are always taken at absolute levels; i.e., they don't change. But I think I'll try to contact my audiologist to ask her about this.

It's kind of a moot point. I went back in my records and found a past audiogram taken at Stanford two years ago (5 months after I'd had CK). Its speech-recognition tests had been taken at the same (low) reference level (70 dB) as the tests that were taken a week ago. The older test showed 92% speech recognition, while last week's test showed 72%. So clearly I've lost some hearing on my AN side over the past two years. And subjectively, before last week's test, I was pretty certain I'd lost a little bit more hearing over the past couple months.

The hearing loss is a bummer, but I'm learning to reconcile my regret and focus on the positive outcomes of my treatments.

Best wishes,
TW

[free2be]

TW,

I guess to some extent the preciseness of the hearing test is moot. It is what it is and it is more a matter of adjusting and doing what you can to make it better. I say that, but I'm too analytical to live by that thought...I'll want to know precise readings as I go along. I'm sorry that you are having this issue, but as you say, we do need to concentrate on the positive aspects. It's harder to do some days than others. I'm having that full feeling in my ear...it feels so full I think it's affecting my hearing...but other than annoying I can deal with the fullness.

Best,
Connie

[Tumbleweed]

I'm pretty sure those pure-tone tests are always taken at absolute levels; i.e., they don't change. But I think I'll try to contact my audiologist to ask her about this.

Follow-up: I asked my audiologist, and she confirmed my understanding was correct. The presentation levels for pure-tone tests are always the same. By law, they are calibrated to a specific reference level (0 dB SPL). In other words, even though your audiograms may be administered years apart from one another, the pure tones are produced at exactly the same levels so that an apples-to-apples comparison can be made and long-term trends in your hearing can be determined.

The presentation level for the speech-discrimination portion of an audiogram, on the other hand, is arbitrary. Some people's hearing distorts when the volume is too high in their headphones, while others experience actual pain if the pre-recorded voice is too loud. It's up to the audiologist to set the level they feel is both valid and most comfortable for each test subject.

In looking over my past test results, I have determined that 80 or 90 dB is the best presentation level for my "speech-discrim" tests. Any louder hurts my ears and causes the sound to distort on my AN side. Any lower, I have trouble hearing most of the words. (To make a point through hyperbole, if they lowered the presentation level 1000 dB, I -- or anyone else, for that matter -- wouldn't be able to hear any of the words, resulting in a speech-discrim score of 0%. So below a certain level, the presentation level does matter!) I'm not going to leave the presentation level solely up to the audiologist in future speech- discrim tests. I plan to suggest they use an 80 or 90dB presentation level for optimal comfort and most-valid results.

Best wishes,
TW