Author Topic: Newly Diagnosised and overwhelmed  (Read 8108 times)

jdunavan

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Re: Newly Diagnosised and overwhelmed
« Reply #15 on: March 01, 2011, 08:00:00 pm »
Thank you for all of your kind words.  Saturday was a bad day.  It was really the first day that I knew I didn't need to be anywhere and I had time to fall apart.  So I did.  But now that i had that time, i really feel like i got it out and i can deal with this now.  I just needed that day to vent and release I guess.  I have a GREAT support system here, with my family and my church family.  I really feel at peace now.  I know that God is going to be glorified one way or another in this situation.  I am excited to see how I fit into that plan.   Thanks again for the support and words of encouragement. 
My husband and I are seeing a neurosurgeon on friday and will had a lot of questions there.
Feeling normal again,
Joanne
Joanne
1.4 cm in right ear

chrisransom

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Re: Newly Diagnosised and overwhelmed
« Reply #16 on: March 01, 2011, 10:21:12 pm »
Joanne,
I hope you find this forum as usefull as I did.  I too was just diagnosed just recently in January and my first visit with a specilist was absoultely overwhelming.  I understood what they said to me and they were nice and kind about if but it was sort of like being hit by a 2x4.  But one of the things they gave me was a brochure form ANA and i looked it up and, well, here I am.  I learned a lot - A LOT in this forum and form the ANA publications. Use them and learn as much as you can.  By the time I got my second opinion I was able to ask intelligent questions and decided that I was a good candidate to watch and wait.  My symptoms,like yours,  are relatively mild - "wierd" hearing and ringing in my ears - but no hearing loss or anything else.  These grow very slowly and and it's not likley that your symptoms will change abruptly - which gives you time to drink it in and get comfortable with the options.  Don't rush in if you don't need to but still do what you are comfortable with.    Beleive me, the thought of hearing loss at any age (I'm 49) isn't pleasant but you do have options - which I am sure you've already figured out from all of the fantastic responses you've gotten.    Welcome and I hope you find some peace here!

Chris
Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

ChristineH

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Re: Newly Diagnosised and overwhelmed
« Reply #17 on: March 04, 2011, 12:29:42 pm »
I guess you could call me a recent diagnosis too...my (ex, and not husband) neurologist did an EEG and MRI w/contrast May 2008 and said everything was normal. In Jan 2011 I needed copies of my current medical records and got them. I read them and my world fell apart..."Brain Tumor" was listed. I read the Radiologist report and he "suspected" it to be an Acoustic Neuroma but that it could also be unknown etiology...About a week prior to finding this out I was having severe ear pain, headaches, hearing loss and the pain increased when I laid down. A friend works at a hearing aid company and performed a  hearing test ...then she called my neurologist. She finally PERSUADED him into ordering it. Well now, in 2 1/2 years it has doubled in size and is 2.3cm x 1.9cm x 1.6cm. I am finding it very difficult keeping my anger and frustration at a manageable level. I pass his office 3-4 times a week and just want to go in there and scream at him. Just dealing with the balance issues, dizziness and the "brain freezes" are very difficult to manage. I have seen Dr. Syms (Neurotologist) and Dr. Porter (Neurosurgeon) and surgery is scheduled for April 7th for a Retro Sig. I AM SCARED!!!!.

Christine
« Last Edit: March 04, 2011, 08:47:12 pm by ChristineH »
2.3cm x 1.9cm x 1.6cm, April 7, 2011 Retro Sig at Barrows in Phoenix, AZ. by Dr. Syms and Dr. Porter slight growth to 2.6cm -3.0cm day prior to surgery. SSD and balance isssues. 6 month MRI shows "enhanced area" : ( Will repeat again in 4 months.

jaylogs

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Re: Newly Diagnosised and overwhelmed
« Reply #18 on: March 04, 2011, 01:39:04 pm »
OMG Christine!!  I have heard a lot of stories on here, like people finding out about their AN's by way of something totally unrelated, but I have never heard of a case where your AN WAS spotted yet they called it normal!! Thank God you picked up your records and found out about this, who knows how much longer you would have gone before things really started to get bad!  Anyways, I wish you well with your upcoming surgery and I hope you'll find peace with this at some point...IN the meantime, you can continue to vent on here as much as you want....we are good about these kinds of things!  Take care and good luck!

Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Mark241

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Re: Newly Diagnosised and overwhelmed
« Reply #19 on: March 08, 2011, 10:25:11 pm »
Hey Christine, I have had 4 surgeries at Barrows' two with Dr. Porter. I as well as everyone here has faced that same fear you are experiencing now. I wish there was a way to be rid of that feeling. I can tell you that each of my times at Barrows was truly a first class experience, from the food service workers to the Neurosurgeon. I have had two other surgeries at another Hospital, both of them had to be re-visioned at Barrow. Dr. Porter at least in my experience has been great, I hope this helps a little.
4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w

Suu

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Re: Newly Diagnosised and overwhelmed
« Reply #20 on: March 17, 2011, 12:51:23 am »
Joanne - good luck on Friday and I hope you get the answers that you'll be asking. Can't wait to find out more and hoping it's good news for you.

Christine - I think we all feel your fear. I hope and pray that all ends up well for you too. Lean on us here and we'll all jump hurdles to come to your aid.

Hugs to both,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Chelle

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Newly Diagnosised and overwhelmed
« Reply #21 on: November 17, 2011, 11:45:34 pm »
Hi everyone...Yesterday my diagnosis went from Idiopathic Sudden Sensorineural hearing loss to AN.  I was stressed enough thinking I was going to have my first intratympanic steroid injection when my doc got the results of my MRI and found the tumor.  It's small 1mm now so we decided on the wait-and-see option.  I know everyone experiences this, but wow...the shock!   Three weeks ago I had a little sinus congestion and chalked up the clogged feeling in my ear to that. I had severe hearing loss at my first hearing test and yesterday showed improvement, which was so encouraging until we saw the MRI.  I'm 52, single, very healthy, active and in grad school working on a masters in social work (now that my youngest is in college)...I may be my first client! I'm seeing Dr. Ana Kim in NYC with the NY Ear Institute who says the surgery would be at NYU Langone, when and if I go that route.  Anyone have experience with of knowledge of either?

I've read many of the posts and look forward to hearing from you caring folks!

1mm right ear
1 cm right ear
Diagnosed 11/15/11
Wait and see, currently getting other opinions