Author Topic: Emotion Wreck  (Read 11881 times)

Jim Scott

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Re: Emotion Wreck
« Reply #15 on: December 02, 2008, 09:57:51 am »

My wife and (adult) son 'chipped in' to buy me a set of the coveted 'TV Ears' two years ago, as a Christmas present.  They may not have been needed to 'save my marriage' but they sure helped! 

My wife can watch the TV with the sound as low as she wants (she has excellent hearing) and I can simply adjust the volume on my headset as high as I need it.  Of course, the sound is a bit 'tinny' and not like 'natural' hearing but you quickly adjust and the convenience is worth the trade-off.  'TV Ears' are now a permanent part of my life and I'm happy to have them.  :)

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.


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Re: Emotion Wreck
« Reply #16 on: December 02, 2008, 05:36:22 pm »
One night with them and I am happy ... even with the little difference in the sound I could
hear everything said and husband didn't have to ask me to read or turn it down...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery


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Re: Emotion Wreck
« Reply #17 on: December 04, 2008, 08:55:11 am »
Hi Soundy,
All I can say is WOW have you ever been put through the wringer by BCBS!  Although we are lucky to have health insurance, the hoops they often make us and our doctors jump through are just ridiculous and you have my sympathy.  My insurance company is Aetna.  Their policy is that they consider BAHA a medical necessity for AN patients due to the surgical malformation of the inner ear that is a byproduct of treatment.  I got a letter from Aetna yesterday denying coverage for my upcoming BAHA surgery.  Luckily, my doc did a peer to peer review (I'm really lucky to have a doc who is so on the ball) and now they are covering it.  He contacted me by e-mail to let me know what was going on since I called his office about the letter.  The few hours of stress this caused me sent me into a temporary emotional tailspin that surprised me -- I thought I was stronger than that.   You must be a very strong person to deal with all the issues you've had to deal with.  Hopefully, you'll be able to make BCBS cover what they're supposed to cover.  I have to say I admire you for fighting the good fight -- YOU ROCK!!  I hope things get better for you soon -- keep us posted.

Best wishes,
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!


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Re: Emotion Wreck
« Reply #18 on: December 07, 2008, 09:49:26 am »
Finally got report late Friday...

and the main thing is he wants me to consult with a neurosurgeon/ologist ... he is an ENT specializing in
otology and neurotology ...says a neuro specializing in pain management is who I need to see

He said there is no air or fluid in between brain and skull that it is confined to the Eustachian tubes ... there is a
narrowing that was not present before surgery and when I had the allergy issues going they were  not draining
and gunk found exit out my ear ...possible surgery at some point to insert tubes or widen narrow part...

there was a little more bone removed than what he thinks was necessary but he said not enough to go back in and
graft bone or a plate to correct it  ...he  thinks it may trigger more head pain

saw some white spots that could be calcification , bone dust or itty bitty bone fragments ( all are fragments I guess
but dust is smaller) or could be  natural occurring age spots we all get on our brain... he said I need to find a neurologist
specializing in pain management to follow up with to find answers ... he said some migraine medicines may help ...

tendons between shoulder running up neck to base of skull is too tight and he says appears short... so some stretching
exercise for that ,which I was already doing as it loosens up tightness I get ...just have to make sure and warm area
with a rice pack before stretching ...also when in shower I heat it in the shower and sit on the built in seat and go
through the stretches ... and key is to not over do it ... that gives me a whopper brain wreck too...

he also recommended not doing BAHA til headaches are managed better...

in the mean time I continue as I have ... buy Tylenol in bulk and keep hydrocodone on hand in case ...

So I guess I am going on a hunt for a pain specialist again... the ones I found nearby were not covered on the plan ...
two are about 30 minutes away ... I think Memphis at 2 hours away was closest to me ... gonna try to get nearby ones
covered or get an appeal for someone in Columbia or Nashville to be covered so I don't have to drive so far...

If a doctor is more than 100 miles from my house they pay me millage ... a trip to Memphis and back is  382 ...times .35
is $133.70 ... so on top of doctor visit  they would have to pay that to me ... going to try to appeal to their cheap side
and make them see that by sending me nearer to home they will pay out less... worth a try...

So other than confirming what I knew didn't learn much... just have another doctor besides PCP saying I need a neuro
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery


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Re: Emotion Wreck
« Reply #19 on: December 07, 2008, 06:08:31 pm »
Sounds like you are getting somewhere and some questions answered from this doctor.  Hope the neuro/surgeon/ologist can help you move closer to more manageable pain and perhaps no pain.  Thanks for updating.  Stay well. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear


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Re: Emotion Wreck
« Reply #20 on: December 18, 2008, 08:09:19 pm »
Got EOB for CT scan and MRIs ...billed through separate places ...same building but different people own the
machines ...same people did both ...weird...

anyway... they were not as high as they told me it would be  ...the MRIs and CT scan are gonna cost
me a grand total of $1998.50 ($301 is CT scan , rest MRIs) after discount ... they were done at and
in-network facility so they got a discount of $1367 and BCBS only paid $79.17 ... the CT scan billed first
and took me over the $2400 I have to have before them picking up 80% ... then the MRIs went through
and BCBS paid their $79.17 ... I don't see that as 80% of anything ...$1358 would be 80% of the $1697.50
left from MRIs ...

was told they could run as high as $6500 so should feel lucky... but the $79.17 that BCBS paid is not enough
seeing I pay them almost $400 a month...

enough of that ...

Saw my PCP Monday and he gave me a good going over...  >:( ... BP is up so taking a pill for that ... he reviewed
the MRIs and agreed with the doctor that ordered them that I needed to go to a new neurologist... he
called around and talked to a few local doctors and they all agreed I should see this guy in Nashville ... the nurse
called to set up an appointment and had it on speaker phone so she could listen talk and write ...
conversation from his offices end went kinda like this

Dr Yukowich ,Yurkowich (or something along those lines) is a
very important busy man ...if your patient wants him to see her
you will need to Fax us why you think she needs seeing and she
has to Fax letter as to  why she thinks she needs seeing and have
the surgeon and the other head doctor to send their findings and MRI
pre and post surgery ...once he looks that all over he will have us
contact her and set up a phone consultation where he can talk to her
and after that consultation he will compare what the doctor notes
and MRIs find and what she has to say and will render a decision with
as to whether or not he will see her

It is so nice to be peek at my insurance and he will drop me
before picking me up... kinda want to just look elsewhere but have sent
off stuff anyway to see what happens

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery


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Re: Emotion Wreck
« Reply #21 on: December 27, 2008, 09:10:46 pm »
The doctor's name is Uskavitch and he can't see me until late February for live consultation and see if he thinks
he can help me

A new option has opened ... there is a neurologist that is in town (20 minutes away ) 2 days a week...
he comes from Virginia...he will see me in January ...he isn't in network but the time and gas saved
not running to Nashville would pay the difference ... I am going to see him the 16th and see what he thinks
then if not satisfied or he is at loss as to treatment I will go on to see

Draw backs are that he wouldn't be available if something like the wrecks that send me to ER or if lucky to
PCP were to happen other than on the days he is here... but at same time I have not run to Nashville 2 hours
away because if it gets to that point I would probably jump out of the truck on the way to ease the pain ..
well might not jump but don't think the ride would be doable when I get to the hurt/puke /hurt more /puke
more cycle

He also has not been practicing as long so may lack experience ...9 years under his belt ... is that enough I wonder...
but is any amount of time enough ... my original surgeon trained at House and was practicing for 25+ years and it
wasn't enough to help me ...

I think seeing the semi local guy and praying that he can help and keeping Uskavitch open for the time being is my
best plan at the moment ... I have a week to cancel the local guy if I decide to go with Uskavitch  and only have to
give Uskavitch 48 hours notice if I decide not to see him and go to local one ...

and so continues of the saga of my search for a doctor   :-\
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery