Author Topic: Emotion Wreck  (Read 11444 times)

Soundy

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Emotion Wreck
« on: November 16, 2008, 10:28:31 pm »
I have had a wreck of sorts...

Tomorrow I finally get to see a new doctor after insurance woes and my surgeon quitting to write
country music :o ...

I have been looking forward to it and getting some problems looked into ...balance ain't great but I can deal
with what I have ...have only actually falling twice in the 16 months since surgery... hearing is muted
in hearing ear and that needs adressed... but mainly my headaches need some resolution...

I was glad to find a new doctor and now on the eve of appointment I am apprehensive...

I have not slept much in past week...read a ton of books ...good thing there is I am ready for several
AN Book Club discussions  :D ...I come on here at all hours of the night when I can't get back to sleep and read posts
and have so much to say but remain quiet for the most part... I am worried that a new AN or something is growing
on left side... I know unlikely but something is reducing hearing ... I have trouble remembering things more so
than usual ... my facial and scalp numbness is worrying me ... after getting almost back to normal why would it get
cranked back up??? to many questions and not enough sleep lately ... have to drive 2 hours to get there and
have to be there at 8:30 to fill out a stack of papers ...

Right now I don't even want to go...

I thought I was through with any major emotional ups and downs but I'm not and it makes me feel weak... I am
going to get up and go...I have a mile long list of questions for the new guy... and a copy of the article
Protect Your Balance or Else that some one posted , that I have highlighted with things I was trying to make my old
doctor understand and he didn't understand and discounted the problems as pretty much my imagination... like
the bouncy vision of distant background objects that plague me ... (thanks to who ever posted the article ...it made
me feel so much better reading that I was not he only one) ...

I tried to explain it to EX Doctor as being like the animation cells that Disney has as back grounds and the characters
were moving across in front of it , but in my case it wasn't in sync and made me dizzy and nauseated because
near objects were in place but the background behind them was bouncing around ... he said I watched
to much TV... I don't watch much but was trying to put it to him in a way that a person without the problem
would understand

I thought I had a question or two but I am just venting and worrying ... and need to go to bed ...

have my own appointment and then a surgical consult with my 9 year old's plastic surgeon... she has a lymphatic
malformation in her mouth and has had surgery 4 times since kindergarten and looks like she will have more for
Christmas break... I worry about her but she acts like it is no big deal... dealing with it since birth she is used
to it ... I had 40 some odd years without AN and kinda liked life better without it ... I wish I had the ability
that she does to roll with the punches and not fight against what is ...


Wish us both luck tomorrow... hopefully will leave Nashville in time to swing my the Galleria Mall and do a little
Christmas Shopping or at least grab a bite to eat ... squeeze a bit of normalcy into the day

and Thanks for being here... this place is a life saver
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Omaschwannoma

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Re: Emotion Wreck
« Reply #1 on: November 17, 2008, 07:19:50 am »
Sounds very similar to what I went through for three years after my surgery before I went back to my original surgeon, Dr. Antonelli with complaint of oscillopsia!  The other "specialists" in my town discounted me, yelled at me, and pretty much made me feel hopeless.

Keep searching dear, what you describe is not normal, should not be happening and don't let it go as you will be in my boat with the balance not coming back to near 100% due to too long of a wait/diagnosis. 

IMO, sounds like you have something going on with the other vestibular nerve.  Hope you get some help. 

My thoughts are with you and your daughter.
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

wendysig

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Re: Emotion Wreck
« Reply #2 on: November 17, 2008, 08:56:05 am »
Soundy,
It sounds like you are as stressed as it is possible to get -- it's no wonder you're not sleeping.  Having to deal with your problems and your daughter's too puts a lot on your plate.   I understand how coming here at all hours makes you feel at least a little better even if it is only from being able to vent.  That is something we all need to do from time to time.  I can understand your anxiety over the new doc too, especially considering what a jerk your last docor was.  Hopefully your new doc will be much more compasisonate and sympathetic that the last one and be abel to give you some answers.   Doing some Christmas shopping mght be just the thing to lift your spirits a little.   Please keep us posted and remember to breathe!

Best wishes,
Wendy
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!

lori67

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Re: Emotion Wreck
« Reply #3 on: November 17, 2008, 11:48:38 am »
Soundy,

Wish I knew you were headed my way.  We could have met for some lunch and some Christmas shopping!  Hope you had a good trip (to the doctor and to the mall) and things went well!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Soundy

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Re: Emotion Wreck
« Reply #4 on: November 18, 2008, 09:13:30 pm »
Things went good yesterday...

First off Sarah is not going to have to have surgery... some of the excess lymphatic tissue had some
saliva ducts clogged ... it popped before we got to her doctor and drained .. she looked and felt better...
this  is a new thing ... looked no different from when it was overgrown tissued that had to be surgically
removed... and she got a prescription to suck on sour candy to stimulate her saliva glands and flush out
any more of the grainy lymphatic tissue still in the gland or ducts...

 this made me thing... I wonder if for those of us with dry mouth but some saliva if sucking sour candy
would help... got her some old fashion sour lemon drops and may try a couple to see what happens ...
won't hurt nothing to try it


With me have some answers but not a full picture of just what is going on... had several tests...air pressure in deaf
ear is low... and the fluid thought to be just an ear infection is actually nasal goo... I have had some allergy
issues going on and for what ever reason fluid is backing out of Eustachian tubes then out ear instead of draining
down like it should ...

Also suspects not enough cerebral fluid ...either it is not there or a leak somewhere... I am on a diuretic to keep
left kidney going ... have had surgery on it to open it up ...had an accident that damaged it and cause scarring that
blocks flow and it needs jump started to work... may be pulling too much fluid from system... will know if we have to
adjust that once all scan results are in... for now staying on it so kidney doesn't slow down on me ...tend to make
stones if I don't stay on meds...

they put a clip like a swimmer would use  on my nose and had me hold my breath and try to gently blow out my nose
and some air and fluid came out deaf ear.. air should move around there some to keep air pressure in ear structure equalized
but not as much as is going on and stuff isn't suppose to come up the tubes... he is worried that I may be getting fluid
and or air (or as he called it) foreign contaminates in my skull... this can't be good ...

Also the patch of thickened skin in ear canal that old doctor removed in April has grown back... it is not infection or
tumor or cystic in structure according to labs ...just thickened skin ... the didn't take it out ... I have a small area in hearing
ear too... may be related to hyped up immune system due to lupus...stress aggravates lupus and have had thicken
scaly patches on my arms and legs from it at times ... good thing is the $45 tube of steroid creme I got two weeks
ago for a patch of scaly skin on my leg   is what he was going to give me to swab into my ears , so I didn't have to
buy anymore ...had  a mosquito bite me just above ankle and  after 2 month it had not healed and was scaly
and had lumps under the skin

Only a 1% increase in hearing loss in hearing ear ... which with all going on that isn't much and may not be any ...may
be better after as the tech put it ...the crisis is over

All this can and probably is contributing to balance issues... numbness to face and scalp could be swelling or
entrapped nerves ... feel better that he found things worthy of further investigation and that it is not all in my
head ( even though it is  :D )

Verdict... have to have CAT scan of temporal bones and two different MRIs on December 1st... one MRI of brain and
the other of neck and upper spine...the old doctor ran post op MRIs without contrast and the new said they should
have been with contrast and be more detailed...

That all said I feel about 90% better after seeing the new doctor and his willingness to work with me and look
 for answers instead of telling me to let things work themselves out with time

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

lori67

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Re: Emotion Wreck
« Reply #5 on: November 18, 2008, 09:22:22 pm »
Sounds like you got a lot more answers on one visit to the new guy than you did from multiple visits to the "old" guy.

I hope this one works out well and gets to the bottom of the issues you need to have addressed.

Next time you're in town, let me know - the coffee's on me!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

sgerrard

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Re: Emotion Wreck
« Reply #6 on: November 18, 2008, 11:08:30 pm »
It does sound promising that this new doctor will be able to find some things and improve some things.

I hope it continues to go well, it is nice to hear some good news.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: Emotion Wreck
« Reply #7 on: November 19, 2008, 06:56:08 am »
Soundy,

What a time you have been enduring... you know I send the "hugglez" to you.... and hoping that you discovered a comfort level with this new doc... sounds like they're taking the bull by the horns and following up/crossing "t's" and dotting "i's" to confirm what is going on. I wish I had words that could help the cause... but I don't... but.... I send wishes... hugglez... thoughts.. and I'm thinking of you (and of Sarah... what a trouper you have there!).....

Hang in there... pls keep us updated... try to sleep/get rest... you've always got us! :)  (scary, ain't it? :D )

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Captain Deb

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Re: Emotion Wreck
« Reply #8 on: November 19, 2008, 12:46:34 pm »
Soundy,
I am so glad you are finally getting to the bottom, or rather, on top, or rather, to the head of the matter!  There are a lot of clueless docs out there who would rather be doing something else with their time like playing golf or writing country music apparently. Living with Chronic headache is NO FUN, believe me and living on hydrocodone is no way to go what with the rebound effect, not to mention the zombification factor.

This past summer I stopped in Nashville driving back from a wedding and went to the Opryland mall.  Ate lunch at the Aquarium restaurant and the next time I pass through, I'm calling you and Lori up and we are definitely hooking up and going there, my treat!!!
Total tourist trap, but it was so cooooooool!!!! Entirely surrounded by the most beaooooooootiful fishies and sharks and corals swimming all over the place. It was really the neatest thing. Since I feel like I have fishbowl head anyway I felt right at home!

Good luck with your scans and ongoing tests and I hope you get some answers

Big huuuuuuuuuuuggggggggs

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

wendysig

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Re: Emotion Wreck
« Reply #9 on: November 20, 2008, 08:33:39 am »
 Soundy,
I'm glad to hear your crisis is past, and especially glad to hear your daughter doesn't need surgery -- a double blessing.  It sounds like your old doc made the right decision in getting out of medicine and the new one seems to really be on the ball.   December 1 is right around the corner, literally and I hope you get the answers you are looking for, and more importantly, I hope there is nothing too difficult to deal with.

Wishing you all good things,
Wendy
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!

Soundy

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Re: Emotion Wreck
« Reply #10 on: November 24, 2008, 02:03:11 am »
December 1 will be here before I know it ...

I will be back in Nashville then... CT scan is at 9 but have to be there by 8 to fill out big stacks of paper..
I kill a small tree each time I go to a new doctor...

my ears are less stuffy even after just a week of putting steroid cream in them so I guess the skin
thing is going down... no more drainage from deaf ear ... my sinuses are clear so they aren't draining out
wrong places ...

Insomnia is still my friend or rather just constant companion... I finished Marley and Me and had to stop near end
and not pick it up for a few days ... knew what was going to happen and didn't want it too , as if putting
the book down could sop it ... finally finished it and cried ... my husband thinks I stay up because I read ... I
have been up for two hours and haven't been reading ...have been listening to him snore and looking at ceiling...
thinking about a slug of benedryl

keep fingers crossed that scans are good and no more holes in head necessary  (except BAHA hole if I can get it
past insurance )

Good Night ... Sleepless in Tennessee
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Emotion Wreck
« Reply #11 on: November 25, 2008, 07:53:08 pm »
One day you all will read about a woman from Mid South Tennessee who hunted down and
tortured a BCBS claims mediator...

Got a letter from BCBS medical claims mediators that told me it was
necessary that I go through with the scans as scheduled... the risk
of inter cranial infection was not worth risking not keeping the
appointment ...

Now don't let what we are going to tell you not keep your
appointment... we (BCBS) are not going to pay on these scans
because we have dropped that service provider...

then they go on to tell me again that I must for my health and well
being have the scans ...called center and all the MRIs and the CT
scan are going to be around $8000 ... BCBS said they will work to get the
reduced price of $6000 that was contracted with the center before they
dropped them ...
ain't they so nice ...  >:(

Doctor sent me to the center instead of the hospital radiology
department because they do good scans and charge less than
the hospital... now got to try to fight them as it was set up before
they dropped the place or get an appointment at St Thomas ...


And it seems they should still pay the out of network amount
which is 70% after deductible is met instead of in-network 85%..

Our local go between with insurance is out of town until Monday... CT scan
appointment is Monday at 9:00 with MRIs to follow and I am suppose to be there
by 8...

Gonna be on phone tomorrow trying to get them to honor it since the arrangements
was made prior to them dropping facility... that is the angle the doctor office said to take ...
or reschedule with someone they will cover ...and going to call BCBS and question why they
won't even  pay at the out of network rate if I go to the facility...

I got the mail at about 1:00 and had to pick up my Girl Scouts at 2:30 so didn't get alot
done as far as working something out ... got to school and was waiting for them and the nurse
said I looked funny ...my lips were tingling and a little light headed ... she took my BP and
it was 187/100 ... instead of going down the road to community building we just stayed
at school and made Christmas cards that have to be turned in my the 5th to be shipped
to Iraq... by 4:00 my blood pressure was almost normal and I felt better

Even though they backed off on classifying me as Pre-existing when the insurance changed in
their seamless transition , that is what they are doing anyway and calling it everything but
not covered due to pre-existing complaint ...they are  throwing road blocks in front of me
every step of the way...

I wanted to sit down and cry...roll on the ground screaming and other things I don't normally do...
I was so happy after visit with new doctor because it looked like things were going to start happening ...
now I am kinda just numb all over...

I talked to husband and we have decided that I am going to go through with the scans Monday
and worry about it later if I can't get a new appointment within a week ...not going to fight
them a month to get it done when it should have been done a long time ago...

I am so tired emotionally ... almost wish I had just kept Bennie and not have had all the after
crap to deal with ... that doesn't last long with two doctors telling me that he
would have soon put breathing at jeopardy... I like breathing ... but life was so much easier with
him in my head
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Emotion Wreck
« Reply #12 on: November 26, 2008, 01:56:55 pm »
Crisis averted...

Been on the phone with Marie off and all all day long... I asked her the first time I called and she told
me I needed to talk with doctor and see how the order was coded as to where it was to be ... before
hanging up ?I asked for her name ,rank and serial number so I could get back with her instead of
talking to yet another person...

Long story short... her poking around revealed that  even though they have told me that they have all AN
cleared as continuation of treatment and not pre-existing , that is how they were running my stuff through ,
as pre-existing...I suspected as much...glad she was honest ans told me ... also the center has not been
dropped and is still on our plan as in-net ... the jerk I talked to yesterday noted that as pre-existing I was
not entitled to coverage until 7/1/2009 and it could be reconsidered at that time...

So I am set and just have to pay them $600 Monday instead of the $2000 they requested yesterday...

She asked if I wanted her to mail me a grievance form to file against the person I talk to yesterday and I
said Yes Please... all she did is look back through to July and found where we had filed appeal and the determination
that I would have continued coverage... yesterdays person didn't take the time or listen to what I was saying ...
just read from screen what was there and made notes... evidently I was also hostile yesterday ...gee ya think...
and I was nice til I was told I needed $2000 and would have to pay the remaining balance too...

Marie told me that we have issues and problems with BCBS because we have the high deductible plan that
doesn't pay as much as the co-pay plans do... when insurance is reviewed in June I hope like heck they
switch us back to Cigna or to a different BCBS

So Nashville is on for Monday morning and I can enjoy the long weekend and family without all this mess in the back of my mind

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

saralynn143

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Re: Emotion Wreck
« Reply #13 on: November 26, 2008, 06:19:20 pm »
Wow. I'm glad it all worked out for you, but I hate that you had to go through it.

Hope you have a relaxing holiday & weekend. I think you deserve it.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Soundy

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Re: Emotion Wreck
« Reply #14 on: December 01, 2008, 09:50:05 pm »
Well I have been scanned and now have to wait til Wednesday for phone conference with doctor
and radiologist... I guess they have to get together and make their stories match  ;)

When I got to Premier Radiology this morning to check in I was given a letter that said that BCBS
may not pay ... so much for Marie... but they said to hold on to $600 and they would file whole amount
and discount bill if BCBS didn't pay on it as agreed...

Went by audiologist and got a prescription for TV Ears so I can get a portion back from insurance ... they
approved it after saying they wouldn't because I had to have a significant loss of hearing ... I would say that
with one deaf ear and one with 86 % word recognition would classify as significant but somehow it went
through with only a 14% loss which wasn't enough ... now records say I have a 57% loss of hearing ...if they
don't pay I am calling TV Ears Christmas Present...

I drive people nuts turning up TV to hear and get tired of husband saying ..Can't you just read it ??? ... yes I can
read it on CC but I like to hear... and I get mad at him and want to stick dense ear plugs in his ears and dull his
hearing and tell him to read it ... this will make watching with him easier... and I won't want to smack him

I got tickled at picture of old older couple on back of packaging with caption that says ...TV Ear saved our marriage...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

 


anything
anything