Author Topic: Regrowth  (Read 4917 times)

anissa

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Regrowth
« on: April 18, 2015, 06:26:28 pm »
Hello! I haven't posted here in a long time but I have some questions about regrowth and want to make sure I'm in the right forum before I launch into my story. Mod, please advise!
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

CHD63

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Re: Regrowth
« Reply #1 on: April 18, 2015, 06:50:16 pm »
Hi anissa .....

If you are talking about an AN regrowth, you are in the right place .....  :-*

Launch your story .....  I'm all ears as I have had mine regrow once ..... next MRI is May 14th so I am already crossing my fingers and toes and saying prayers!!

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

anissa

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Re: Regrowth
« Reply #2 on: April 18, 2015, 07:21:44 pm »
Hello, thank you.  :) my MRIs have always shown a little something along the scar line but it's been suspected scar tissue. The MRI two years ago they noted it and measured at 5.2x2.3x4.0mm calling it a focal modular enhancement and a lesion. Two weeks ago it measured 6.2x4.0x6.0mm. I haven't talked with the neurologist that ordered the test but with my otolaryngologist who thought I should have it rechecked in 5 years. I have a call into the neurosurgeon to hear his thoughts. No one has called it an AN but I'm pretty freaked out. I'm 6 years out from my translab. I don't have a question really, just here to vent a little. Thanks for listening!
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

CHD63

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Re: Regrowth
« Reply #3 on: April 19, 2015, 05:55:49 am »
Hi again .....

Just to make sure you and others reading this thread understand, regrowth of ANs is still rare ..... it occurs only 5 to 9% of the time, with the higher rate most frequently following retrosigmoid approach.

On your signature line you wrote that there was a tiny bit stuck on the facial nerve at the time of your surgery ..... am I correct to assume the surgeons left it to preserve your facial nerve?  If so, did your surgeons ever suggest you might need radiation treatment to zap this remaining piece if it ever began to grow again?

If you are not satisfied with the answers you get from your neurosurgeon, if I were you I would get another copy of my most recent MRI and send it to another extremely experienced AN doctor for a second opinion (many will do it for free).

By the way, I can identify with being pretty freaked out ..... that was me four years ago right now!

Thoughts and prayers!!  ..... and keep us posted on what the neurosurgeon says.

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: Regrowth
« Reply #4 on: April 19, 2015, 06:22:13 am »
MRI's are have a limit on the precision that they can measure size with.  I don't know what that limit is, but the small difference you are seeing may very well just be within that lack of precision.  Also, different Drs can come to different size measurements based on the same MRI.  So, it is very possible that you have no growth at all.  I would do what you are doing, get different opinions from your different Drs and radiologists and ultimately decide for yourself it has grown.

Even with precision measuring instruments there are varying measurements that can result.  A micrometer is a very precise, to the thousandths of an inch, measuring device used in machine work.  As a person with low experience using them, I can measure the same part several times and get several different measurements with them varying about 1/3 the thickness of a human hair.  A skilled machinist would get a different measurement from mine.  At some point one of those numbers, or a range like +/- 0.002 inches, has to be used.

I don't know if an MRI is precise enough to measure something like an AN to a mm here and there.  I definitely would not be chewing fingernails down at this point as you may very well be told to wait 6 months or a year and get another MRI.
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.

anissa

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Re: Regrowth
« Reply #5 on: April 19, 2015, 11:23:27 pm »
Thank you for your responses. I needed to hear that there are other possibilities. Clarice, yes, it was left there to save my facial nerve. It was less than .5mm so I guess they didn't feel the need to zap it. I'll post again as I get more info.
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

anissa

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Re: Regrowth
« Reply #6 on: April 20, 2015, 10:15:15 am »
Good morning, I spoke to my neurosurgeon'so nurse this morning and she relayed that there is no concern with my MRI and that AN re growth is not suspected at this time. I go back in two years for a recheck. She reassured me that change was minimal and that the results were as expected. So I'm going to forget about it for two years.
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

CHD63

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Re: Regrowth
« Reply #7 on: April 20, 2015, 12:49:13 pm »
Hi anissa .....

It is good to have that reassurance.  Just be mindful of any new symptoms cropping up and alert your neurosurgeon to any significant changes.  Otherwise, it sounds like all is good!!

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