Author Topic: Did you know or suspect?  (Read 17026 times)

patrickdoyle

  • New Member
  • *
  • Posts: 8
Re: Did you know or suspect?
« Reply #30 on: April 05, 2014, 07:53:58 am »
The best advice is to listen to your body.  It all makes sense now.  I showed some significant signs that I should not have ignored.  However I attributed it to my time in Iraq downrange as an Infantry Officer (2006-2007), where my truck was blown up pretty good.  I lost all of my hearing and that created balance issues.  Fast forward until 2011.  I was in Afghanistan as a contractor and remember all of a sudden losing my balance, falling down, headaches, tinnitus etc.  I should have got it checked out then, but I didn't.  My mentality was "drink water and it will go away."  I attributed all of this to that day and ignored symptoms.  Rock headed.  It totally floored my when I was diagnosed.  My doc said that during my explosion in Iraq that I probably had less hearing capacity to loose.  He said for example I probably went from 70% to 0 rather than 100% to 0 because of this.  Lesson of the story is listen to your body, you know when something is off and get checked out.
PD

Diagnosed: 4.5 right-sided AN 09NOV2013
Right-Sided Retrosigmoid Craniotomy 13JAN2014
Facial Nerve Damaged & Stretched
Total Facial Paralysis Right Side
12hr surgery
FU MRI on 14APR2014

luvzmutt

  • New Member
  • *
  • Posts: 44
Re: Did you know or suspect?
« Reply #31 on: April 08, 2014, 08:25:24 pm »
I was totally shocked.  I have NF-1 and have an optic glioma (a benign tumor on my optic nerve).  I have been monitoring it since 1982, with thankfully, not change.  In July of 2010 I had my yearly MRI for the optic glioma.  Imagine my surprise when my GP emailed me and told me I had a "schwannoma in my vestibular area".  I was in Knoxville at the time taking my daughter to her freshman orientation at the University of Tennessee.  This July I will be entering my 4th year of W&W.  I have tinnitus on the AN side (the right side, the optic glioma is on the left side). I have been experiencing some dizziness (the windshield wipers drive me batty when I have to drive in the rain). I'm going for vestibular testing later this month. 
Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

patrickdoyle

  • New Member
  • *
  • Posts: 8
Re: Did you know or suspect?
« Reply #32 on: April 09, 2014, 08:08:49 am »
luvzmutt- good luck with your testing.  Everything will work out. 
PD

Diagnosed: 4.5 right-sided AN 09NOV2013
Right-Sided Retrosigmoid Craniotomy 13JAN2014
Facial Nerve Damaged & Stretched
Total Facial Paralysis Right Side
12hr surgery
FU MRI on 14APR2014

rodneyd

  • Jr. Member
  • **
  • Posts: 78
Re: Did you know or suspect?
« Reply #33 on: April 18, 2014, 09:49:20 am »
Put me down in the "surprised" category.  I had known something was wrong with my balance for several years.  It was especially pronounced when I bent forward (felt like I was going to fall on my face) or when I had a glass of wine or other alcoholic drink.  One drink and I would stagger around like a drunk person.
Also had mild tinnitus.
But I never suspected a brain tumor.  When I finally went to my GP and complained about the loss of balance, she sent me to a neurologist who ordered the MRI.  When the results came back positive for an AN (.9 cm) I was very surprised, but also relieved that now I knew what was causing my lack of balance.  I was also relieved that I didn't have MS or some other serious disease. 
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

terisandler

  • Full Member
  • ***
  • Posts: 194
    • Radical Mystic
Re: Did you know or suspect?
« Reply #34 on: April 19, 2014, 08:40:00 am »
I had no idea!  I had been unable to hear from my right ear for probably 5 or more years.  I thought it was aging.  I was told by an audiologist in 2008 that I was a few years away from needing hearing assistance.  I went to a big box warehouse store for an audiogram in 2011 and the technician there would have been more than happy to sell me their high end hearing aids but I balked at the price.  My internist at the time said I was fine since I could hear her soft spoken voice.  I move to IN shortly after that and finally got fed up without being able to hear so I decided it was time to break down and get hearing aids.  The audiologist I saw here took one look at my results and sent me to an ENT who sent me for an MRI and then for consultations with a radiation oncologist and neurologist.  I then went into research and destroy mode so didn't take the time to be shocked. 
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!