Author Topic: New to the club  (Read 5118 times)

Marc

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New to the club
« on: June 25, 2012, 04:08:32 pm »
Hello,
Only posted a few times prior and post surgery.  Despite having a remarkable recovery (running 5 miles at 4 weeks and have continued to maintain my marathon training regiment), I have now been given the NF2 diagnosis.  I'm 40 now and have never had any past medical problems. This has been a surreal experience for me and my family.  I'm 8 weeks post-op and feel 100% back to normal (minus SSD).  However, the NF2 diagnosis keeps me awake at night...but, not for my health...my 7 and 9 year old girls.  As I keep most of my life fairly private I would appreciate the opportunity to talk to a fellow NF2er about the condition and quality of life for kids (mine have not been tested as of yet).  It is my hope that if caught early kids can retain their hearing and have a happy, functional life. 
Thanks,
Marc
4x3x3 Vestibular Schwannoma
Translab @ HEI 04/19/2012
Left SSD, mild facial weakness

arizonajack

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Re: New to the club
« Reply #1 on: June 25, 2012, 05:19:27 pm »
I would appreciate the opportunity to talk to a fellow NF2er about the condition and quality of life for kids (mine have not been tested as of yet). 

Check out the NF2 Crew support community website. There is a message board like we have here but you have to register to get to it. Looks like something that will fit your requirements.

http://nf2crew.org/

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

Cheryl R

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Re: New to the club
« Reply #2 on: June 26, 2012, 02:23:58 pm »
Marc, I will send you a PM with my email address.     I am an older adult onset NF2.         I can say right off that your girls have a 50% chance of having NF2.        How ever this does not mean they already have signs of it.      I am guessing that you do not have other family with NF2 so it is likely that if you girls do have it in time will not be until they are close to the age you are now before it shows.                I also have 2 grown daughters and was told they would not likely have it till around as old as I was when mine was found which was around 52.                  There is also Jeff on here who does have family with NF2 and own younger history than mine.     That is his ID name on here.            You are welcome to email me and ask what ever questions you have.     We are all our own individual case with NF2 but not a welcome one to have!                            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

Raven

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Re: New to the club
« Reply #3 on: June 27, 2012, 02:06:00 pm »
We have two boys ages 14 & 18............don't even want to think about it

 I was diagnosed at 48, nobody else in my family has or had it that we know of. We were going to get the boys genetically tested but I think the test is only 60% accurate.........someone else may know if this is correct.
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

Susan A

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Re: New to the club
« Reply #4 on: June 27, 2012, 05:33:09 pm »
Hi Marc,
Definitely check out the NF2 crew at http://www.nf2crew.org/boards/index.php - you'll find people there who were diagnosed when young as well as parents of kids diagnosed with NF2.

They have a Facebook group too - NF2 Crew - it's a closed group so you have to ask to join.

Do I understand correctly from one of your other posts that you're in the Bethesda area? If that's so, you DEFINITELY want to check out the NF2 natural history study at NIH. They are looking for people of all ages who've been diagnosed with NF2. I'm sure Dr Asthagiri will be able to give you good information about what you might be able to expect for your girls.
http://www.anausa.org/smf/index.php?topic=15609.0 - the posting here at ANAUSA where I heard about the study
http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2008-N-0044.html - the official study info and contact details
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

christynic

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Re: New to the club
« Reply #5 on: June 28, 2012, 12:28:24 am »
Marc, may I ask how you were diagnosed with NF2 with only one AN?  I have some of the signs, but with only one AN, my surgeons down here are doubtful.  I'm still worried and I don't have a way to really rule it out.

Thanks!

Christy
1.5 cm Left AN removed 1/24/12
Suboccipital resection/Scripps Green La Jolla
Left SSD (pre-surgery hearing was 100%)
34 yrs old

 


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