Author Topic: NF2 came back Negative?  (Read 6050 times)

JimmyD

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NF2 came back Negative?
« on: January 23, 2015, 12:27:31 pm »
I'm a little confused. Had a Glioma tumor on the optic nerve,right side a/n left side a/n and meningioma. Any answers would be appreciated as doctors have no answer. ???
Glioma Tumor left optic nerve 1960,RS AN 2.2CM FSR 5 treatments @JHH by Dr Williams in 1999 & LS AN 2.6CM 30 treatments 2007 by Dr Brian Chon@Centra State,NJ.Blind in L.eye,deaf in R.ear.Test for NF2 came back negative.Doing OK.

Cheryl R

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Re: NF2 came back Negative?
« Reply #1 on: January 24, 2015, 08:38:23 am »
Jimmy, This is NF2 no matter what the test came back as.   They are not always accurate.     Have you found a dr who is very experienced with this.    There are various clinics around the country.       I have had 3 tumors.    2 ANs and a facial neuroma and have had surgeries.     I go to Univ of Iowa for my care and my neurologist has several NF2 pts.     We need to be watched more carefully and more frequent MRIs according to what symptoms you have.   I have not done a lot of research lately since has been 7 yrs since my last tumor and surgery.     There are several internet sites that give dr and treatment info.           I was older when mine was found and have had no spinal or skin tumors.                  I hope you have no more tumors and hope for the best for you.
                                                           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Susan A

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Re: NF2 came back Negative?
« Reply #2 on: January 25, 2015, 08:52:11 pm »
Jimmy, Cheryl is right, with 2 ANs the diagnosis is automatically NF2. It sounds to me as though your doctor(s) don't know enough about NF2. I have a friend in NJ who has NF2 - if you want, I can ask her who her doctor is.

As of 1997 the diagnostic criteria for NF2, known as the Manchester Criteria, requires one of the following three conditions to apply:

• Bilateral Vestibular Schwannoma (Acoustic Neuroma)
• 1 or more 1st degree relative with NF2 + unilateral Vestibular Schwannoma at <30 years
• 2 of the following: Meningioma, Glioma, Schwannoma, Juvenile Posterior Lenticular Opacities


http://www.nf2is.org/diagnosis.php

You have 2 ANs, plus a glioma and a meningioma - that more than meets the criteria! It is important that you have doctors who know about NF2 because NF2 tumors tend to be treated differently.

Cheryl and I will happily answer any other questions you have. If you're on Facebook, you might want to look for the NF2 Crew page there - lots of people who can share their experiences.

Susan
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

Susan A

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Re: NF2 came back Negative?
« Reply #3 on: January 25, 2015, 09:09:54 pm »
Oh, and the reason your testing came back negative is most likely because although you have NF2, you don't have it in every cell in your body. That means you didn't inherit it, it's just a random genetic mutation that happened.
http://nf2is.org/genetics.php
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

producer

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Re: NF2 came back Negative?
« Reply #4 on: January 26, 2015, 05:16:14 am »
Or possibly you are mosaic NF2 as I am. My test was negative which confirmed Mosaic NF2.  (as Susan described above)

Best wishes
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

JimmyD

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Re: NF2 came back Negative?
« Reply #5 on: January 26, 2015, 12:28:35 pm »
Thanks everyone for your input. If you know any specialist for NF2 please let me know. :)
Glioma Tumor left optic nerve 1960,RS AN 2.2CM FSR 5 treatments @JHH by Dr Williams in 1999 & LS AN 2.6CM 30 treatments 2007 by Dr Brian Chon@Centra State,NJ.Blind in L.eye,deaf in R.ear.Test for NF2 came back negative.Doing OK.

NYLady

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Re: NF2 came back Negative?
« Reply #6 on: January 26, 2015, 01:46:10 pm »
Hi Jimmy,

Check out NYU, Drs. Thomas Roland and John Golfinos.  If you Google NF2  NYU, you will find all the info you need to know about them.  Specializes in NF2.  While I dont know much about NF2, I have had first hand experience with these terrific doctors.  They are wonderful.  Good luck.

NYL

JimmyD

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Re: NF2 came back Negative?
« Reply #7 on: January 26, 2015, 03:18:43 pm »
Went to NYU last week met with Dr kerjannis and gave him all my information and latest MRI.He met with the tumor board to see if I was available for Avastin clinical trial.Apparently they don't treat NF2 patients only meningiomas and mine was not big enough. 2.8 cm.He is going to consult with oncologist Tina Mayer at RWJ.
Glioma Tumor left optic nerve 1960,RS AN 2.2CM FSR 5 treatments @JHH by Dr Williams in 1999 & LS AN 2.6CM 30 treatments 2007 by Dr Brian Chon@Centra State,NJ.Blind in L.eye,deaf in R.ear.Test for NF2 came back negative.Doing OK.

NYLady

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Re: NF2 came back Negative?
« Reply #8 on: January 26, 2015, 05:49:13 pm »
Jimmy,

A website that might be of some use to you...www.nf2is.org.  Lots of info as well as list of treatment centers and contact numbers.  Hope it is of some help to you.

NYL

 


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