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Author Topic: How many of you who are more than 10 years out from surgery still get scans?  (Read 3916 times)

Cynaburst

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How many of you who are more than 10 years out from surgery still get scans?
« on: March 09, 2016, 08:55:31 pm »
I am just wondering what different people do.  I know that there is a lot of variation in follow up protocols following surgery.  If you do still get periodic scans and you are ten or more years out, how often do you get scans?

I know that regrowth is not likely, but is not impossible either...


Thanks for your input.
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Patti

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Re: How many of you who are more than 10 years out from surgery still get scans?
« Reply #1 on: March 10, 2016, 07:12:19 am »
I was going every 5 years.  But this summer (intuition or God or fate or whatever), after only four years since my last scan, i went to a neurologist and she sent me for a scan.  After 15 years of no growth there was regrowth (see signature).  What a shock! I thought I was done.  Anyway, I'm ok now. I get headaches, but at least I have to have frequent scans now so I'll always catch it before it gets too big.  But I do think this was rare, in fact, everything about my situation has not been the norm.  So don't compare yourself to the rare ones!   
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4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

MLB57

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Re: How many of you who are more than 10 years out from surgery still get scans?
« Reply #2 on: May 14, 2016, 10:37:16 am »
Hi Cynaburst,

If you read my signature that will tell my AN journey regarding treatment. As for the MRIs.. my last one was last year--next one needed in 2018... I'm wondering at  what point Dr Loeffler will say it's a done deal.. That my AN will not grow anymore.. . but my ins is paying so I will keep having them until he feels it truly is a done deal.

Regards, Mary/AKA Grammy
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1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

arizonajack

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Re: How many of you who are more than 10 years out from surgery still get scans?
« Reply #3 on: May 15, 2016, 10:39:51 am »
I think MRIs are a lifetime commitment for us. My next one will be in September, about 18 months from my last one. The results will dictate when the next one after that will be.
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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

jaylogs

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Re: How many of you who are more than 10 years out from surgery still get scans?
« Reply #4 on: May 15, 2016, 10:07:27 pm »
I had one about a year after my surgery and that was it. No more! It's been over 6 years since surgery now...
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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

tweety

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Re: How many of you who are more than 10 years out from surgery still get scans?
« Reply #5 on: May 17, 2016, 09:06:29 pm »
I had one 6 month past my surgery and just had one this March 6 years since my surgery and Dr. Chen (Pittsburgh Pa) said I needed no more.  I have had no regrowth and I feel very fortunate.  My ANA journey was about 6 month after Jaylogs and I used this site a lot.  I still get on it time to time to read updates etc.  I am glad to say besides being deaf on my right side, I have done well with no other issues. Tweety
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