Author Topic: Tumbleweed's 52-month followup MRI  (Read 3383 times)

Tumbleweed

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Tumbleweed's 52-month followup MRI
« on: November 25, 2012, 02:19:18 pm »
Hi, everybody:

Had my followup MRI and audiogram, 4 years and 4 months post-CK. Both brain tumors -- my AN that was treated with CK, and my hypoglossal schwannoma that has not been treated -- are stable. No further shrinkage, but no growth either.

My hearing has deteriorated slightly compared to a year ago, with a 10dB drop in response at 500 Hz (possibly statistical error) and my speech-recognition score lowering from 84% to 60%. However, I had my audiogram performed at a different facility this time around (I didn't travel to Stanford for my followup tests this year), so it's an apples-to-oranges comparison that might not be totally accurate. Differences in equipment, sound booths and technicians could partially account for the different results.

All in all, a great outcome. I'll have to get another MRI in a year, because I'm W&W on the untreated hypoglossal tumor.

Life is great!

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 52-month followup MRI
« Reply #1 on: November 25, 2012, 02:42:21 pm »
TW ~

Thanks for the positive update!  Good news is always welcome.  :)

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.

chloes mema

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Re: Tumbleweed's 52-month followup MRI
« Reply #2 on: November 25, 2012, 03:41:52 pm »
TW
Good for you!

Sorry to hear about the loss in hearing but could be due to the differences you mentioned.

All in all, great news!   :D

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

jaylogs

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Re: Tumbleweed's 52-month followup MRI
« Reply #3 on: November 25, 2012, 06:08:52 pm »
Hey TW, congrats!! Glad to hear all is good! y'know, I've always wondered why these audiologists don't use a standard testing program and all with the same voice? I had mine done here locally and then at House Ear...the one here was a female saying the words live and the one at House was a recorded male voice.  Interesting...anyway, I digress.. congrats!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

mk

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Re: Tumbleweed's 52-month followup MRI
« Reply #4 on: November 25, 2012, 08:22:36 pm »
Hi TW,

I am very glad to hear your news. 10 dB is most likely within the error margin, and the news about both tumors being stable is great. Most importantly, it looks like you are also feeling good. A great conclusion to the thanksgiving holiday.

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.

Tumbleweed

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Re: Tumbleweed's 52-month followup MRI
« Reply #5 on: November 26, 2012, 01:04:16 am »
I've always wondered why these audiologists don't use a standard testing program and all with the same voice? I had mine done here locally and then at House Ear...the one here was a female saying the words live and the one at House was a recorded male voice. 

I agree, it's a problem. So many variables come into play when having audiograms performed alternately at different facilities: The headphones employed may offer a different frequency response or less effective noise isolation from external noises, the sound booth might leak more noise from the building's HVAC system (masking pure tones at lower levels and making it appear that you couldn't otherwise hear them), cabling might be microphonic (picking up the sound of your breathing, creating more masking), the technician might use a different presentation level for the tests (a lower level might cause you not to hear certain spoken words, whereas a louder level might cause distortion that makes the words sound unclear), etc. This is why, as Marianna pointed out, a 10dB variance in results isn't necessarily conclusive. I am no less than shocked at how loose the standards are for audiology facilities performing audiograms. For this reason, I never have complete faith in the results. Thankfully, MRIs are much more exacting and conclusive.

Thanks so much to everyone who responded with their well wishes and support.

Best,
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

It is what it is

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Re: Tumbleweed's 52-month followup MRI
« Reply #6 on: November 26, 2012, 07:30:47 pm »
Thanks TW for your update.  Enjoy the holidays. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

leapyrtwins

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Re: Tumbleweed's 52-month followup MRI
« Reply #7 on: November 29, 2012, 12:09:24 am »
Glad to hear that things are stable.  Good news!

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways