ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Tumbleweed on November 21, 2010, 01:56:17 am
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Hi, all:
I had my 28-month followup MRI and audiogram at Stanford this past week. (The previous one was last early December.) I received mostly great news:
My AN and HN (hypoglossal neuroma) are both the same dimensions as they were a year ago. All the measurements fall within the 2mm margin of error for MRIs.
The only bad news was related to my hearing on the AN side: I lost 10 dB more hearing in my midrange frequencies (at 1 and 2 kHz). But I also gained back 10 dB at 8 kHz. My word recognition score fell from 88% to 72%, but that result may not be reliable, as the test was taken 20 dB lower in level than the one taken last December. I don't understand why the audiologist didn't use the same test setup so there could be an apples-to-apples comparison. This seems like Hearing 101 to me.
Dr. Chang told me I won't need another followup test for a full year.
Dr. Chang thought my AN would remain the same size going forward. He said that swelling can happen, however, as late as 3 years after CK treatments but that there is no hard cut-off date for potential swelling. When I asked him if he thought I should continue taking natural anti-inflammatories til I'm 3 years post-CK, he didn't outright recommend it but said I "could do so if I wanted to."
All in all, a great report. I had been a little concerned about the untreated HN, so it's a big relief to know it (and my treated AN) are stable.
Best wishes to all,
TW
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TW
Well done! (in ALL aspects!). Dr Chang is correct about potentials, even further down the road as I did run into a couple of things that I had to contact my team for assistance. They have been resolved but was surprised, even at the 3 yr mark, that these things can still crop. Part of the "radio" game, I guess. BUT, MAJOR congrats for a terrific 28 month update! :) Great news and a terrific update for others to use as reference as they do their research.
CONGRATS m'dear! :)
Phyl
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TW
Great news for you I am sure. My last CK treatment is tomorrow, I hope my furture results are as good as yours. Little sad about this thing could swell up to 3 years after treatment but I guess that is something we all have to deal with.
TJ
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Tumbleweed: That is great news, about both masses. Good way to start the holidays.
Best, Kathy
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Thanks, everyone, for your support!
Looking at the longer-term picture: Since I received CK 28 months ago, my hearing on the AN side has improved 15 dB at 250 Hz (upper-bass frequency band) and 10 dB at 8 kHz (high frequency band). But also since CK, my hearing has diminished 25 dB at 1 kHz and 20 dB at 2 kHz (both are midrange bands). Unfortunately, it's the midrange bands that are most important for speech discrimination. But it is what it is. I'm quite certain I would've lost that much hearing and more had my AN gone untreated. And my balance has improved dramatically (subjectively, around 75% improvement) since receiving my CK treatments.
On the subject of balance, Dr. Chang told me some (relatively few) patients eventually regain completely normal balance, but this usually takes 5 or 6 years after treatment.
Because of the additional hearing loss in my midrange frequencies over the past year, Dr. Chang now says it is uncertain whether I will retain my hearing in my left ear over the long term. A year ago, I had not lost much hearing and it was looking like I would end up in the hearing-preserved group. It's not that this is highly in doubt now; it's more like a toss-up. I should know more a year from now.
Dr. Chang mentioned that a new type of digital hearing aid will be coming to market in the next 12 months. It is worn as a cap on one of the back teeth. He didn't have any further information at hand, but this sounds exciting to me. Can't wait to learn more about it.
Best wishes,
TW
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Waay cool, weed 8), congrats on the 28 month.
. . . a new type of digital hearing aid will be coming to market in the next 12 months. It is worn as a cap on one of the back teeth. He didn't have any further information at hand, but this sounds exciting to me. Can't wait to learn more about it.
You might want to check these links:
http://www.sonitusmedical.com/product/
http://www.wsoctv.com/health/24285680/detail.html
http://www.inhabitat.com/2010/05/24/soundbite-a-hearing-aid-that-transmits-sound-through-teeth-and-bones/
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TW ~
Congratulations on the encouraging MRI results and Dr. Chang's positive analysis of your potential for a complete recovery. Your extensive research has paid off...you've done well. Good job!
Jim
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Hi TW,
congratulations on the wonderful report, I am so happy for you. And that HN tumor not growing, what a relief.
As for that slight hearing loss in the midrange frequencies, hopefully it will stabilize at the present levels.
All the best,
Marianna
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TW,
Good news, I think. I appreciate your informative posts as you have your follow up right there with Dr. Chang and get immediate feedback to your direct questions. My 2 yr MRI will be within the next couple of weeks. I mail the disk to him and await the response. My word recognition is markedly diminished. You're right, no treatment likely would have had the same outcome with hearing and the odds of deafness with surgery would have likely been greater. The main thing is the rascal(s) aren't growing, so congratulations on that. Take care.
Mona
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Glad to hear it, TW. I hope that HN stays put. Though your hearing may not be permanently stable, I bet you will get some use out of that ear for quite a few years to come.
Steve
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Thanks again, everyone (Marianna, Jim, Phyl, Kathy, TJ, Mona, Steve, 6pick), for your care and feeding. :)
Great links, 6pick. Thanks so much. I sent an email to Dr. Chang asking him if this is the same hearing aid he'd heard about. I'll let everyone know what he says.
Mona, you are right that the odds of deafness with surgery would have been greater; every doctor I consulted told me it was virtually 100% certain I'd lose all hearing in that ear during surgery. I'm with Steve: every year I have hearing in my left ear is a victory and a blessing. I may eventually lose it all, but I'm loving having it now.
Best wishes,
TW
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Great links, 6pick... I sent an email to Dr. Chang asking him if this is the same hearing aid he'd heard about. I'll let everyone know what he says.
I already received a reply from Dr. Chang tonight! He confirmed the hearing aid he told me about was the same one that 6pick provided the links for above.
Best wishes to all,
TW
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I already received a reply from Dr. Chang tonight! He confirmed the hearing aid he told me about was the same one that 6pick provided the links for above.
Best wishes to all,
TW
Glad to help! ;D
Mark
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Hi, everyone:
I asked Dr. Chang about the apparent increase in the AP measurement of my AN over the last 17 months. (The AP -- or antero-posterior --measurement is the second of the three listed in my signature below.) Although it only increased from 12 to 13 mm over the last year (which is not significant, given the 2mm margin of error inherent in MRIs), the measurement was 10 mm seventeen months ago -- an apparent increase of 3 mm since. Was this swelling or regrowth, I wondered?
Neither, it turns out. Dr. Chang took another look at my films. He had measured my AP dimension obliquely (at an angle) in my latest MRI but at a perpendicular vector in the one taken in June, 2009. An apples-to-oranges comparison. When he re-measured my AP dimension on the current films along a perpendicular vector, it measured 11 mm -- only 1 mm greater than the 10 mm measured in June, 2009, and technically insignificant. In plain English, when the measurements were taken at the same angle for both MRIs, and allowing for the margin of error, there was no change.
This reinforces what I and a number of other people on this forum have said before: the dimensions of your AN that your doctor cites are slightly arbitrary. That is, if the measurements are taken obliquely (as they often are), it is totally up to the guy taking the measurement as to what angle they will be taken at across the span of the tumor, easily resulting in a 2mm or higher variance from what someone else might measure using a different angle. (ANs are measured obliquely to include any lobes that jut out from what might otherwise be a symmetrical shape.)
The lesson here is to not take your AN measurements as absolute, exacting gospel. While they are probably the most accurate measurements you're going to get, know that there is some wiggle room. Because of the irregular dimensions many ANs have, we can't expect our doctors to remember what angle they measured across the span of your tumor a year (or two or three) ago. If you are competent in reading your own MRI and feel comfortable making your own measurements, by all means make them yourself and compare your measurements with what your doctor came up with. You'll get a better feel for how your AN's size is changing (if at all). And keep a record of the trend in size over the course of all your MRIs. It was my attention to this trend which led me to question my latest measurements and resulted in my getting a more consistent evaluation -- and greater peace of mind.
Best wishes to all,
TW
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TW ~
Thanks for the concise explanation of the inherent disparity in AN measurements from the MRI scan. This is valuable information and most appreciated. Happy Thanksgiving, too!
Jim
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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
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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
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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
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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
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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