Author Topic: Radiation choice  (Read 13154 times)

skipg

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Re: Radiation choice
« Reply #15 on: January 26, 2013, 05:08:41 pm »
TW,
I agree with your post. Based upon my research, I came to the same conclusion and was going to have CK done until Proton Therapy became available locally. I like doing things a little different and time will tell if I made the correct decision. Congratulations on your good results and may I follow in your footsteps.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

GM

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Re: Radiation choice
« Reply #16 on: January 27, 2013, 05:25:43 am »
First of all congratulations on deciding on your treatment!  You've probably have already read here that deciding on a treatment approach is truly the hardest part...Again congrats.

I chose Gamma Knife as my treatment approach because it met all three of my personal conditions of treatment:  1) I could return to work quickly (had GK on a Friday, returned to work on Monday. Only my boss knew that I had the procedure).  2) it was a one time treatment (i didn't want to go for multiple treatments, or (hopefully) have to deal with this choice again, 3) best chance of saving my remaining hearing ( versus loosing my remaining hearing due to the surgery approach that I would have to take because of my AN's size).

For me it was the right choice, I have been blessed with the outcome of a successful GK procedure.  Best wishes on your treatment.

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

PaulW

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Re: Radiation choice
« Reply #17 on: January 27, 2013, 07:05:49 am »
Can I ask how your hearing is nearly 10 years later?
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Tumbleweed

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Re: Radiation choice
« Reply #18 on: January 27, 2013, 09:09:22 pm »

I chose Gamma Knife as my treatment approach because ...  2) it was a one time treatment (i didn't want to go for multiple treatments...

Gary

A valid consideration. Some people sail right through the CK treatments, sometimes even falling asleep. For me, it was psychologically traumatic (until I asked for and received a double-dose of anti-anxiety medication on the 3rd treatment session; no problem then!). I would still do CK again, in light of how successful my treatments were. But if the idea of radiation treatments freak you out like they did me, the one-shot GK treatment is a great alternative.

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

GM

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Re: Radiation choice
« Reply #19 on: January 28, 2013, 08:37:47 pm »
My hearing level is just about the same as it was post treatment.  Tinnitus level is the same, and my speech discrimination level is pretty much the same.  I have a hearing aid that I got through the VA, it's really helpful in large rooms and noisy environments.
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

arizonajack

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Re: Radiation choice
« Reply #20 on: January 30, 2013, 09:55:05 pm »
Keith, here's an interesting article about GK and CK:

http://emedicine.medscape.com/article/857604-overview#showall

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Tumbleweed

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Re: Radiation choice
« Reply #21 on: January 31, 2013, 03:05:15 pm »
Great article. Thanks for the link, arizonajack!

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

PaulW

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Re: Radiation choice
« Reply #22 on: January 31, 2013, 08:47:01 pm »
Found this the other day which is pretty interesting too

http://www.panarabneurosurgery.org.sa/journal/October2008/p1-10%20(551).pdf
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

arizonajack

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Re: Radiation choice
« Reply #23 on: February 09, 2013, 11:10:13 am »
Found this the other day which is pretty interesting too

http://www.panarabneurosurgery.org.sa/journal/October2008/p1-10%20(551).pdf

Especially the part about hearing preservation on Page 3.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

mk

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Re: Radiation choice
« Reply #24 on: February 09, 2013, 07:06:56 pm »
Thank you Paul for posting this.

I actually learned something new from this article that explains why so many of us suffer from dry eye, even though we don't have facial paralysis. Apparently this is due to injury to the "nervus intermedius", which upon a quick Google search is the branch of the facial nerve (nerve VII) located between the motor component of the VII and the vestibulocochlear nerve (nerve VIII). Obviously being located so close to nerve VIII it sustains injury during surgery (or even sometimes radiation), which causes disruption to the lacrymal function (i.e. tearing). The article also mentions "crocodile tear syndrome", which happens when the patient tears when eating. I think some people have reported this problem on the forum.

The article doesn't mention any other consequences of nervus intermedius injury, but I may look a bit more and report back.

Marianna

*Update* the salivary glands may be affected too, which would explain why some people complain of a dry mouth. And nervus intermedius also is responsible for taste from the anterior part of the tongue and palate. This might explain why some people have altered taste after surgery..
« Last Edit: February 11, 2013, 10:00:31 am by mk »
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: Radiation choice
« Reply #25 on: February 10, 2013, 11:46:39 pm »
Thanks for posting this study, Paul. I found it to be a fascinating read.

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

jfspainter

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Re: Radiation choice
« Reply #26 on: February 11, 2013, 07:48:59 pm »
Hi Kieth,
We are opposite twins! I lost much of my hearing to the mumps at 5. So have worn hearing aids most of my life. As luck would have it my AN (2.3 cm) was on my left side that HAD the better hearing. I am 66 also and had GK 8/2/12. I have new aids. I got the aids which has helped in speech recognition the best. I have worn Siemens and Widex but these seem to do the trick.

Good luck with your course of action.

Jane