Author Topic: Need Advice  (Read 6859 times)

kibh64

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Need Advice
« on: September 03, 2013, 07:00:26 pm »
Went to the ENT because of ear pressure, dizziness, facial numbness, slightly drooping face and balance issues.  Have had bad headaches for about 4 or 5 years but don't know if that is a symptom or another issue.  Anyway the ENT checked me out and said she was almost certain it was a tumor behind my ear an AN and that I should get a mri and hearing test done.  The way they talked in the doctors office was they would do it immediately.  Well that was Wed.  and this is Tuesday and they hadn't called me back.  So I called and they told me it would be September the 19th before they would do any tests.  They want me to do all my tests at the University of Kentucky hospital when I know I can get the MRI sooner in my home town. I am confused they seemed to be so concerned the day I went and that they would schedule as soon as possible.  I guess my question is do I wait till the 19th which is 2 1/2 weeks or do I go see my family doctor and ask to do an mri sooner.  I will not be going to UK hospital for treatment I would choose a hospital I feel has more experience.  Don't know what my options are.  Thanks for any help.

arizonajack

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Re: Need Advice
« Reply #1 on: September 03, 2013, 08:22:59 pm »
Two to three weeks IS immediately in the doctor's space-time continuum.

Call your family doctor tomorrow and ask how soon he could schedule an MRI if he had to. If he says two to three weeks you might as well wait for the 19th. It's not that far away and it's not likely to make much difference in your AN (if you have one).

It took me 4 months from symptom onset to get my first MRI through the VA. Count your blessings.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

kibh64

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Re: Need Advice
« Reply #2 on: September 03, 2013, 09:05:11 pm »
Oh Gosh! 4 months is a long time.  I don't know how your nerves stood it.  How did you manage the balance and dizziness until then.  Constantly loosing balance and almost falling or walking in to walls. 
Dizziness isn't as bad just take spells of almost passing out.  You must be a very strong person I would have a nervous break down if I had to wait that long.  Just want to deal with it and go on with life however it may be.

arizonajack

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Re: Need Advice
« Reply #3 on: September 04, 2013, 12:41:49 am »
Oh Gosh! 4 months is a long time.  I don't know how your nerves stood it.  How did you manage the balance and dizziness until then.  Constantly loosing balance and almost falling or walking in to walls.  Dizziness isn't as bad just take spells of almost passing out.  You must be a very strong person I would have a nervous break down if I had to wait that long.  Just want to deal with it and go on with life however it may be.

Well, for one thing, my balance issues were relatively minor compared to what you are describing. They never got any worse than feeling like I was walking on a boat. I had no dizziness, no vertigo, no passing out, rarely walked into walls.

The other thing is that getting health care from the VA is like socialized medicine in Canada and the UK. Things go very slowly. One just gets used to it.

Keep in mind that I didn't know I had an AN for those 4 months. My symptoms (major loss of hearing in one ear, slight tinnitus, imbalance) were a little alarming, but not very annoying that I couldn't just keep on going while waiting to be evaluated.

The diagnosis was a bit of a shock at first, but the AN was small (3mm x 4mm x 9mm) and my ENT gave me some information that started me on the road to understanding and I spent the rest of the day on the internet, learning all I could, and finding this site.

I guess I'm the kind of person that has the ability to keep emotions reasonably in check during adversity. I don't think I'm any stronger than anybody else, it's more of an attitude thing.

You'll know soon enough if you've got an AN and then you'll learn how to deal with it. You'll get plenty of support here and plenty of good information from people in the same boat.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

LakeErie

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Re: Need Advice
« Reply #4 on: September 04, 2013, 05:37:05 am »
As said above, it takes time. I had my diagnostic MRI at my local hospital less than 2 miles away and it took 2 weeks to get on the schedule. To schedule my repeat post-surgery MRI's, I need to give the clinic where I was treated 2 months notice. Hang in there.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

nftwoed

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Re: Need Advice
« Reply #5 on: September 04, 2013, 11:34:24 am »
Hello;
   My feeling is to wait as long as you are going with ENTs. The bit of extra time will make little difference except cause you anxiety.
   Just my opinion, but when it comes to many things ear, nose, and throat related, ENTs are an interesting lot.
   One thing, an ENT is certainly not an acoustic neuroma specialist. I had two ANs on the same nerve, the radiologist got the report correct, but the ENT overturned the radiologists report and said I had Meniere's Disease and the IAC enhancement with white spots was, "Clinically Insignificant."
   So; ENT meets AN and wrongDx.com meets a pt. going to become deaf in the future. I should have retained an attorney within 10 years of that misdiagnosis. It was misdiagnosed for 6 years. They could have initially performed a middle fossa.

nftwoed

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Re: Need Advice
« Reply #6 on: September 07, 2013, 10:15:04 am »
AJ;

   doctor's space-time continuum  < That's such an interesting word combination. Live long, and prosper  V

kibh64

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Re: Need Advice
« Reply #7 on: September 08, 2013, 03:23:55 pm »
Got an MRI scheduled at my local hospital Tuesday at 3:00.  I know it sounds strange but I am excited to have gotten it so much sooner and will be glad to get it over with.  Thanks

Kathleen_Mc

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Re: Need Advice
« Reply #8 on: September 09, 2013, 01:57:44 am »
doesn't sound strange to be excited to get the MRI over and done sooner than later.....better to get it done and get on with things than be left waiting. Good luck, let's hope for the best
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)

vonda007

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Re: Need Advice
« Reply #9 on: September 27, 2013, 12:36:24 pm »
Very useful post for me, thank you!

DeeDeeR

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Re: Need Advice
« Reply #10 on: October 18, 2013, 01:52:48 pm »
I went to the University of Kentucky for my first opinion, I was really impressed with the doctors.  They said the Gamma Knife was a good option.  The next day I went to Vanderbilt,  my surgeon said under no circumstances would he or any doctor at Vandy would do radiation, the tumor was to big and I was too young.  (it is 2.9cm and I just turned 50 Sunday)  UK told me they did 10-12 surgeries per year, Vandy does 80-100, so it was no decision.  My translab surgery is scheduled for Thursday, October 24th at Vandy. It has been exactly two months from diagnosis to now.  I am terrified but confident that I made the right choice in doctors and hospitals.  If you need more info, don't hesitate to ask.  I live in Southeastern Kentucky and I am willing to talk.  Prayers for you.

It is what it is

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Re: Need Advice
« Reply #11 on: October 18, 2013, 02:46:15 pm »
kibh64-any update?
DeeDeeR-you'll be in my thoughts and prayers on the 24th. 

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

robinb

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Re: Need Advice
« Reply #12 on: October 18, 2013, 09:50:29 pm »
I have always been able to get an MRI scheduled, at a choice of multiple facilities within a few days. Both for brain and when I had torn my ACL and needed knee surgery.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0