Author Topic: Four years post retrosigmoid, 9 years post GK  (Read 4958 times)

mk

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Four years post retrosigmoid, 9 years post GK
« on: June 12, 2015, 08:53:01 pm »
I haven't been around for a long time, I hope that some people here will still recognize me! I just browsed around a bit and I saw some familiar names.
I recently had my MRI done, exactly four years after my surgery, and I am happy to report that everything looked fine, and the tiny sliver that was left along the nerve is behaving itself. I got "promoted" to having an MRI every two years.
For those new patients who have faced failed radiation and the possibility of surgery afterwards, as daunting as it is, there is always hope for a good outcome.

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.

bethtretrault

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Re: Four years post retrosigmoid, 9 years post GK
« Reply #1 on: June 13, 2015, 04:27:49 am »
Thank-you for your post. I needed to hear good news as I am getting ready to do retrosigmoid (no previous radio surgery, though).
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

CHD63

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Re: Four years post retrosigmoid, 9 years post GK
« Reply #2 on: June 13, 2015, 07:42:20 am »
Hi Marianna .....

Good to hear from you again!  ..... and to read the great report on your MRI.  Maybe we are the "good luck twins" because my recent 4 yr MRI promoted me to two years before the next one, as well.

And yes, there is always hope for a good outcome!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ANGuy

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Re: Four years post retrosigmoid, 9 years post GK
« Reply #3 on: June 13, 2015, 08:42:58 am »
I am relatively knew to this board and not familiar with your history until now.  Conventional surgery after radiation is a challenge.  Congratulations on your great outcome and thanks for posting about it.  You, your family, and your team did a great job!
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Echo

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Re: Four years post retrosigmoid, 9 years post GK
« Reply #4 on: June 13, 2015, 05:20:23 pm »
Hi Marianna,

So glad to hear from you, of course you are remembered. I'm thrilled to see you are doing so good!!! Congrats!!!   

Cathie

Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

mk

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Re: Four years post retrosigmoid, 9 years post GK
« Reply #5 on: June 22, 2015, 07:47:10 pm »
Cathie and Clarice, it is good to hear from you, I am glad that things are going well.

ANGuy, conventional surgery after radiation is considered a challenge, but as I have learned, as everything else AN related it all very much depends upon the skill of the doctors. I found that some neurosurgeons had almost a "punitive" attitude after hearing about previous radiation. One of them told me that my chance for facial paralysis was 100% because of the previous radiation. BTW, I have never met one patient of this doctor who hasn't had at least some degree of paralysis, radiation or not.
My doctor however told me that for skilled surgeons the odds are not different. After the surgery when I asked him if the surgery had been more difficult than average he said "in some locations of the tumor yes, in some no". This doctor has a record of achieving excellent results, and very good recovery rates.

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.

mindyandy

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Re: Four years post retrosigmoid, 9 years post GK
« Reply #6 on: August 27, 2015, 07:45:31 am »
Hey there guys  :) I haven't checked in for awhile either.  I'm glad to hear things are going well MK. Our stories are very similar. I will be having my next MRI around January. Hopefully my news will be just as good.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012