Author Topic: Newbie waiting on diagnosis  (Read 3473 times)

Tedica

  • Newbie
  • *
  • Posts: 1
Newbie waiting on diagnosis
« on: April 20, 2018, 10:40:09 am »
I'm currently being tested for AN. According to my symptoms, headaches, fullness in ear, tingling sensation in face,lots of dizziness,  etc, my primary care physician is suspicious.  I had head CT without contrast yesterday that is negative.  Should I proceed with MRI?  also, do any of you have headaches in back of head or temple area?  I mostly have strange feeling in my head that is difficult to explain.  Feels like I'm in a fog at times.  Also having poor vision at times. I've been told these are related to sinus/allergy issues but CT of head states sinuses are clear.  Just really frustrated...

Director

  • Administrator
  • Full Member
  • *****
  • Posts: 103
Re: Newbie waiting on diagnosis
« Reply #1 on: April 20, 2018, 11:21:44 am »
Hi Tedica,
  Standard test for diagnosis is an MRI with contrast, so it sounds like that would be your next step. As far as your head, many AN patients describe something they call 'wonky head", so it would not be uncommon. If you are diagnosed, please contact us at ANA and we will send you a free patient kit with lots of information.
Best, Allison
director@anausa.org

Kathleen_Mc

  • Hero Member
  • *****
  • Posts: 782
Re: Newbie waiting on diagnosis
« Reply #2 on: April 22, 2018, 02:16:41 am »
Hi Tedica:
You need to have an MRI with contrast, CT with or without contrast will not be definite enough ( depending on size, my initial tumor was big enough to be found on CT but it as very big).
Pre Diagnoses I had severe headaches but I can't remember what area of the head hurt, that and inability to sleep were ongoing for a few years before diagnoses then came the facial numbness. I did not realize I was loosing my hearing but was down to 50% loss in the one ear by time of Diagnoses.
Welcome to the club nobody wants to belong to, you will find a lot of information and support here.
Take care
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Patti

  • Sr. Member
  • ****
  • Posts: 361
Re: Newbie waiting on diagnosis
« Reply #3 on: April 22, 2018, 02:01:15 pm »
yes, i got headaches in both the back of my head and temple area.  they improved significantly after surgery, but i still get them at times.  Go for the MRI with contrast.  Good luck!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015