Author Topic: Newly diagnosed - waiting to see docs  (Read 324 times)

deray1999

  • Newbie
  • *
  • Posts: 2
Newly diagnosed - waiting to see docs
« on: September 05, 2019, 07:44:16 pm »
I was recently diagnosed w AN. On 8/24 Had hearing loss for 2 months now. Thought is was phones at work then thought it was wax. Went to primary doc who said maybe fluid in ear and to try decongestant and Flonase. After 2 weeks no difference I called my ENT because I was due to fly and didn’t want my ear to pop and discover an ear infection. During this time I had a couple of face twinges but assumed it was fluid now in my sinuses
My husband one morning said to me what is going on with your face? I had felt some twitching but didn’t realize my whole left side of face had suddenly drooped. It went back but out of concern we went to ER.
After 2 CTs and and MRI I was told I had an acoustic neuroma - 5mm by 16mm
Of course I was in shock. I was sent home to follow up w my already scheduled ENT appt to check hearing and referrals to neuro surgeon and neuro ENt
I am just in limbo right now waiting for my appts. I have gathered as much info I can so I wil understand docs
Feeling a little anxiety and my facial nerve randomly spasms up. Not easy to be at work not knowing when it will happen. Has anyone else experienced this facial drooping or sometime scrunched up feeling

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3227
  • Life is good again!!
Re: Newly diagnosed - waiting to see docs
« Reply #1 on: September 06, 2019, 04:08:39 am »
Hi deray1999 and welcome to this forum of new, supportive friends .....

Every AN patient is unique but you can find many with similar symptoms here on the forum.  If you have not already done so, send for the free ANA new patient, which will give you much good, accurate information.  See: https://www.anausa.org/forms/request-for-information

Best wishes to you and feel free to ask questions here.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Enri

  • New Member
  • *
  • Posts: 29
Re: Newly diagnosed - waiting to see docs
« Reply #2 on: September 08, 2019, 08:13:50 am »
Sorry to read about your diagnosis but welcome to the club.  When I was first diagnosed I went through the deer-in-the-headlights phase.  I probably read every post in this forum and anything AN-related I could get my hands on.  Amazingly enough, the most difficult and stressful part was deciding what to do.  Once I decided, it just turned into a project that needed execution.  Each person’s journey is different.  You need to find out what you are comfortable with.  Hang in there.  As someone else suggested in another post, it usually gets better after choosing the trailer (the other post used the analogy of trying to get a horse into a trailer).

I had retrosigmoid in nov 2016 and so far, keep fingers crossed, AN free.  Tinnitus and partial hearing loss in the right ear are my symptoms (pre- and post-surgery).
----
Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

deray1999

  • Newbie
  • *
  • Posts: 2
Re: Newly diagnosed - waiting to see docs
« Reply #3 on: September 08, 2019, 06:52:59 pm »
Thanks for the words of encouragement. I have gathered some great info on here and am prepared with questions for my docs. Some days I am good and some days not. I just listen to my body and rest when needed. I am a positive vibe person and this has not changed that. I know it will take time to weigh out a decision on next steps and what would be the right choice for me. This forum has def opened me up to possibilities.

chrisabbott

  • Jr. Member
  • **
  • Posts: 50
Re: Newly diagnosed - waiting to see docs
« Reply #4 on: September 10, 2019, 09:26:28 pm »
My first symptoms were strange tastes, then facial numbness - by the time I finally got my first appointment with a neurologist, I had tightness, mild twitches, and tingling + my left eye was looking different and didn't close with a good seal.  I had very dry eyes and noticed that I couldn't feel eye drops going in my left eye either.  A couple weeks later I had an MRI and learned I had a 3.1 cm tumor (mostly removed in June of this year).  The neurologist said she was expecting they would find a tumor, but not so large - I already had hearing impairment so I didn't realize it was getting worse, and adjusted to the balance quite easily.

I've since been told that it is uncommon to have issues with facial nerve prior to diagnosis & treatment - much more common for balance and hearing issues to be the early symptoms.  From looking around the forums here, I think we have some good company - the promising news is that facial nerves can recover (shame the hearing doesn't). 

A couple weeks ago, I felt eye drops - not every time but every once in a while.  I guess the sensations come back like a light bulb flickering rather than returning all at once.  I hope your outlook is promising - you appear to be taking the news well and it seems like attitude is an important factor for how well you feel about your treatment choices and recovery.

Good luck!
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Translab June 13th Dr Bien & Dr Dunn in OKC
No change in facial numbness, dry eye (not worse!)

lryan42

  • New Member
  • *
  • Posts: 17
Re: Newly diagnosed - waiting to see docs
« Reply #5 on: September 11, 2019, 04:26:49 pm »
Hey Deray1999,

As others have said - welcome.  We're sorry you're in the club but we're happy you've found this forum.  I know for me it was a huge relief to no longer have the sense of being completely alone in this journey.

One thing I have seen and suggest you keep in mind is that everybody's experience is *really* different - some of us have good hearing, others don't; some of us have vestibular issues and others are totally fine in that regard; some of us have facial nerves impacted in various ways while the rest are not affected in that way.  For me personally, the issues for the past few years have all been vestibular and only recently has my hearing gotten impacted.  And, each day can be pretty different in each of those regards.

I am a very "do something" oriented person however one blessing with this condition is that there is rarely a rush to do anything.  Consequently, you almost definitely have plenty of time to research, explore your options, see multiple doctors, and frankly just wait and see how your AN progresses. 

Good luck and let us know if we can help.
2017 - Mild vestibular symptoms; lots of testing, misdiagnosis, and vestibular rehab
2018 - MRI w/o contrast: 4mm x 3mm x 2mm AN
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN

My AN's location is inside the vestibule (rare) and not treatable w/o definitely going SSD; waiting and watching for now.

 


anything