Author Topic: Tumbleweed's 28-month followup MRI and audiogram  (Read 6374 times)

Tumbleweed

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Tumbleweed's 28-month followup MRI and audiogram
« on: November 21, 2010, 01:56:17 am »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #1 on: November 21, 2010, 06:25:53 am »
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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

TJ

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #2 on: November 21, 2010, 11:40:54 am »
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

kathy g

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #3 on: November 21, 2010, 11:52:33 am »
Tumbleweed:  That is great news, about both masses. Good way to start the holidays.
Best, Kathy
November 2010- 10 x 7 x 8 mm
May 2009- 28 x 26 x 17 mm
GK  May 2009 Washington Hospital, Fremont, CA

Tumbleweed

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #4 on: November 21, 2010, 12:50:50 pm »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

6pick

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #5 on: November 21, 2010, 01:03:52 pm »
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/

5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Jim Scott

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #6 on: November 21, 2010, 02:15:54 pm »
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  
« Last Edit: November 22, 2010, 03:11:43 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mk

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #7 on: November 21, 2010, 07:06:34 pm »
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
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Anomar11

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #8 on: November 21, 2010, 08:18:00 pm »
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

 
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

sgerrard

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #9 on: November 21, 2010, 08:32:25 pm »
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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tumbleweed

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #10 on: November 21, 2010, 09:24:02 pm »
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

L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #11 on: November 22, 2010, 02:28:18 am »

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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

6pick

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #12 on: November 23, 2010, 11:03:06 am »

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
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Tumbleweed

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #13 on: November 24, 2010, 10:55:14 pm »
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

L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Jim Scott

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Re: Tumbleweed's 28-month followup MRI and audiogram
« Reply #14 on: November 25, 2010, 11:28:44 am »
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
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.