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Author Topic: Tumor on each side but blood test negative  (Read 12273 times)

v357139

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Tumor on each side but blood test negative
« on: March 04, 2017, 07:39:05 pm »
Friend of mine has tumor on each side but blood test negative.  How can he find out for sure if he has NF2 or not?  Are there doctors who specialize in NF2?
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Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: Tumor on each side but blood test negative
« Reply #1 on: March 06, 2017, 02:31:06 pm »
Thanks I!!
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Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Willbur

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Re: Tumor on each side but blood test negative
« Reply #2 on: March 16, 2017, 10:06:20 am »
Quote from: v357139 on March 04, 2017, 07:39:05 pm
Friend of mine has tumor on each side but blood test negative.  How can he find out for sure if he has NF2 or not?  Are there doctors who specialize in NF2?

Automatic NF2. It's called mosaic NF2.
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Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Susan A

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Re: Tumor on each side but blood test negative
« Reply #3 on: April 26, 2017, 06:48:02 pm »
Yes, what Wilbur said - it's an automatic diagnosis of NF2.
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2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA
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