Tumbleweed's 17-month followup tests

[Tumbleweed]

Hi, everyone:

I had my 17-month followup MRI and audiogram at Stanford last week. Good news: my AN has shrunk another 4 mm along the oblique-transverse axis. It now measures 17 mm along that plane and is no longer pressing against and indenting my brainstem!  The other two dimensions are essentially unchanged -- i.e., within the 2mm error of margin for MRI.

My hypoglossal schwannoma, which has not been treated, has not changed in size. I'll stay in W&W on that one.

Interestingly, my AN still shows prominent dark blotches, normally associated with necrosis. Dr. Chang didn't put much stock in it being necrosis, however, at 17 months post-CK. He explained that if the MRI had been taken with less time for the contrasting agent to absorb into the tumor (like marinating meat), some areas that didn't absorb the agent would remain dark. However, I remember remarking to the MRI technician that he was taking longer than usual to finish injecting me with the contrasting agent (gadolineum); I was concerned he had missed my vein. The technician replied that he likes to wait longer than the other technicians before doing the MRI with contrast, to allow time for the agent to be absorbed by the tumor. I am certain he took longer than the other technicians, if only by an extra 30-60 seconds. It's my uneducated opinion that the dark blotches are probably necrosis and that the high doses of systemic enzymes I've been taking post-CK (to shrink the tumor) have slowed the formation of scar tissue and kept the tumor soft (scar tissue shows up white in MRIs taken with contrast). This is my wild guess; I have no way of knowing if it's true, and Dr. Chang certainly knows a lot more about this than me. It makes me happy to think that it's persistent necrosis, though. 

My audiogram showed a 5dB improvement in hearing in bass frequencies and no further hearing loss in the highs. 5 dB is not considered conclusive, when one considers error margins caused by equipment, acoustical conditions and the technician. But comparing my current results to those obtained from audiograms taken at Stanford 6 and 12 months ago, my hearing in bass frequencies has improved 15 to 20 dB in the bass range over the past year. That's clearly significant.

I do not need another followup for another year. Yaaaayyyy!!! 

Needless to say, I'm thrilled.

Best wishes to all,
TW

[Kate B]

Good news: my AN has shrunk another 4 mm along the oblique-transverse axis.

My hypoglossal schwannoma, which has not been treated, has not changed in size. I'll stay in W&W on that one.

My audiogram showed a 5dB improvement in hearing in bass frequencies and no further hearing loss in the highs. 5 dB is not considered conclusive, when one considers error margins caused by equipment, acoustical conditions and the technician. But comparing my current results to those obtained from audiograms taken at Stanford 6 and 12 months ago, my hearing in bass frequencies has improved 15 to 20 dB in the bass range over the past year. That's clearly significant.

You received lots of good news.  We patients live by those tests that benchmark our progress. I am glad that yours turned out to your satisfaction.

Kate

[leapyrtwins]

Sounds like a great report to me, Tumbleweed.

Congrats! 

Jan

[sgerrard]

Since it went well with Palace's data, I have made a bar graph for Tumbleweed as well:



Professor AN says: "Notice the swelling seen 6 months after treatment, followed by a decline in the overall size of the neuroma over the next 12 months."

I agree, it is thrilling. 

Steve

[Tisha]

Congrats, Tumbleweed....fantastic  news.  Thanks for letting us know.  So encouraging for many of us.   Cool chart, Steve!

Tisha     I have my 12 month MRI in a couple of weeks.

[windy]

Tumbleweed,

I am really glad to hear of your good news.  It is encouraing news for others and says a lot for the technology of CK!  I am glad you posted your information and really appreciate the detail of your results.  I also have to commend the impressive graph by Steve!!  Thanks for shaing.

Windy

[mk]

TW,

congratulations for your terrific results, obviously they couldn't have been better.

I also noticed dark spots in my 18 month post-GK MRI, although there was more contrast and the overall darkened area was noticeably less than my previous two MRIs at 6 and 12 months. My understanding is that it takes time for scar tissue to form.  I guess that since your AN is still shrinking, it hasn't transformed into scar tissue yet.

Good news too for your hypoglossal tumor, hopefully it will behave itself and stay like this.

Best wishes,
Marianna

[jerseygirl]

TW,

Congratulations! What a holiday present! Enjoy the good news!


             Eve

[Jim Scott]

TW ~

Congratulations on a fantastic 17-month MRI report!  My neurosurgeon noted necrosis on my 24-month MRI so I believe it is likely that is what you're seeing, even if Dr. Chang is not impressed by the dark spots (don't tell him I wrote that!).  The fact that your hearing is slightly improved is also a victory for you.  I trust your recovery will continue apace.

Jim

[eab]

Congratulations, thanks for sharing your good news!

Beth

[Tumbleweed]

Thank you so much, everyone, for your wonderful replies! It's great to have your support.

Steve, that is a really cool chart. Thanks so much for taking the time to create and post it. It gave me another perspective on my progress and is very encouraging.

Jim, I agree with you, I think I've still got necrosis happening! Like Marianna said, it makes sense that I'd still have necrosis -- rather than scar tissue -- in parts of the tumor if it's still shrinking.

Again, thanks to everyone who replied and for the sense of community and caring.

Sincerely,
Tumbleweed

[Anomar11]

I'm delighted for you TW.  This is an excellent result.  Take care.

Mona