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Author Topic: 30 days post diagnosis - unsure what to do  (Read 6672 times)

HTownANGuy

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30 days post diagnosis - unsure what to do
« on: May 21, 2019, 12:10:43 pm »
I was diagnosed 30 days ago after waking up with severe hearing loss. MRI showed a small 6mm AN and I am in watch and wait with a follow up MRI in 2 more months.

I don't know that I can wait that long. I have had 12 days since waking up with no hearing that I have had pain, vertigo, motion sickness etc. I honestly don't know how to continue for 2 more months like this. I know it is a small AN but man it is kicking my butt.

Feeling defeated as I missed another day of work today. Looking for any options to help pre treatment or should I be calling back and getting my appointment moved up?

Thanks for any help
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4/23/19 - AN Discovery - 6mm - W&W
8/2/19 - MRI - AN growth to 9mm - Scheduling surgery
9/1/19 - Tentative Surgery

Sundragon

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Re: 30 days post diagnosis - unsure what to do
« Reply #1 on: May 21, 2019, 02:48:19 pm »
I feel your pain. I had been misdiagnosed for dizziness and hearing loss three years ago. Finally I got a doctor that really listened and sent me to get an MRI in February of this year.

The only advice I can give you is that physical therapy does help to make your brain understand the dizziness isn't going away and that it needs to learn how to compensate.

Good luck with whatever you choose. I hope you find some relief soon.
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gary.s

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Re: 30 days post diagnosis - unsure what to do
« Reply #2 on: May 21, 2019, 08:42:35 pm »
Hi HTownANGuy,

I am sorry that you are dealing with all of the symptoms so many of us experience from time to time. The importance of waiting for your next MRI is to see if the tumor is growing or not. The location of the tumor could be causing all of the symptoms, regardless of the size. I would talk to your doctor and see if you could get something to relieve the vertigo and motion sickness. Many of us have found that eating candied ginger helps to alleviate the dizziness feeling. Also it is important to eat a well balanced diet and try to get lots of rest. Alcoholic beverages do not make things better when you are dealing with such severe symptoms. We all experience anxiety with acoustic neuromas which seems to increase our symptoms, so try to relax. Lots of folks do yoga or meditate, or anything that can keep you in a mellow place. Hopefully, some of your symptoms will decrease so that you can have some near normal days. Be strong.

Gary
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Mild symptoms on right side July 2014
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B

HTownANGuy

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Re: 30 days post diagnosis - unsure what to do
« Reply #3 on: May 24, 2019, 07:53:04 am »
Thanks so much for the responses. I was out for a couple days with bad symptoms, called my doc and got me in to see him next week. Hopefully we can figure something out.
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4/23/19 - AN Discovery - 6mm - W&W
8/2/19 - MRI - AN growth to 9mm - Scheduling surgery
9/1/19 - Tentative Surgery

v357139

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Re: 30 days post diagnosis - unsure what to do
« Reply #4 on: June 19, 2019, 06:30:55 pm »
How did it go with your doc?  How is your vertigo?
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Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

HTownANGuy

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Re: 30 days post diagnosis - unsure what to do
« Reply #5 on: August 03, 2019, 07:20:25 pm »
Hey sorry for the slow reply. My vertigo has been much better actually. The doc said it was just one of the phases and should become better. I did however just get my 3 month follow up MRI and my AN has grown 3mm in a small time frame. So I am having surgery within the next month.

So trying to process that and think of any questions I can.
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4/23/19 - AN Discovery - 6mm - W&W
8/2/19 - MRI - AN growth to 9mm - Scheduling surgery
9/1/19 - Tentative Surgery

HTownANGuy

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Re: 30 days post diagnosis - unsure what to do
« Reply #6 on: August 03, 2019, 07:24:31 pm »
Posting a few questions if anyone knows or had experience!!

1. I am planning on surgery at the end of august and have a trip to NY in late October. I know my balance wont be the best but wondering if flying is an option or how long afterwards I will be ok to travel.

2. I will be having the middle fossa approach to hopefully save some of my hearing - I forgot to ask my doc but is there a metal plate or something I will have to deal with metal detectors etc with?

3. Most people use a cane afterwards? How long?

These are just some things I thought of after my appointment friday. Thanks!
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4/23/19 - AN Discovery - 6mm - W&W
8/2/19 - MRI - AN growth to 9mm - Scheduling surgery
9/1/19 - Tentative Surgery

Greece Lover

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Re: 30 days post diagnosis - unsure what to do
« Reply #7 on: August 06, 2019, 03:25:46 pm »
Hey HTown Guy, I feel pretty prepped to answer your questions as I had Mid Fossa, too.

Flying should be fine.  Lots of people fly out to LA to the House clinic for surgery and they often fly back within a couple weeks of surgery. Ask you Doc of course, too.

My "bone flap" as the called it, or piece of skull they took out, was put back in place and then held there with an absorbable plating system.  Eventually, the stuff is reabsorbed by the body while the skull heals back into place.  So, I have no screws, plates, or anything in my head.  It's amazing and it feels pretty much normal and I have had absolutely no issues.

I never used a cane.  I did have a shower chair for a few weeks which was pretty helpful.

I'm super glad I had the middle fossa.  saved all my hearing.  Feel free to DM me if you want to chat further. Glad to be of help if I can.

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Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

Cheryl R

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Re: 30 days post diagnosis - unsure what to do
« Reply #8 on: August 20, 2019, 11:03:01 pm »
You should be able to fly that long post op as many go across the US for surgery and are flying home in 2 weeks.       
Every dr has their own protocol of what they use to fix the skull for the closing.      I have been here for a long time and never heard of anyone having an issue with flying and TSA issues.        I also go to same university hospital as Greece Lover and have the same bone flap.
  How much your brain has compensated already plays a part in how your balance will be post op.         I was never dizzy.  Found I did have some balance issues when walked outside.    I never used an assistive device.       Some do.       You will know more after surgery and PT will evaluate you also.   Some people do take vestibular rehab but  I never did and just made sure to walk frequently.        I was back to work as a hospital nurse in 2 months.
                      I hope all goes well for you.                  Cheryl R
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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

jami

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Re: 30 days post diagnosis - unsure what to do
« Reply #9 on: October 12, 2019, 09:25:39 am »
HI HTown Guy,

i asked a lot of questions about flying too, as I do a lot of travel for work. Everyone i asked said I would have no issues. I realize i am probably responding after your surgery...

Most importantly i didn't realize that i would need more time after the surgery to get back to work. I took about 8 weeks, and wish I had taken more. It was about 4 weeks back in the office that i started traveling again.

The things that I pay attention to are:

Hearing (if you experience a lot of white noise + tinnitus): It makes long trips tough. Especially international travel. I use my BOSE Noise Canceling headphones and connect to the CALM app, listening to rain noise. Completely helps me relax. In addition, i got a medical travel exemption for trips from the US to India, China etc.
Need for rest: Its just stressful in general, so i travel the day before and allow time for rest.
TSA: I think all medical 'plates' nowadays are titanium (i have a big one in my leg) and its never caused an issue EXCEPT in India, and i think that their detectors were set up a bit differently
Balance: Everyone has a different outcome, I make sure my coworkers are aware i am not drunk ;) just balance issues. I did PT after the surgery and together we worked on tips for travel, how to manage during business meetings, big dinners, etc.

I hope that all has gone well!

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Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

v357139

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Re: 30 days post diagnosis - unsure what to do
« Reply #10 on: December 09, 2019, 07:57:17 pm »
How did it go HTown?
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Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!
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