Author Topic: Newly Diagnosed in Richmond  (Read 10880 times)

moe

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Re: Newly Diagnosed in Richmond
« Reply #15 on: January 03, 2010, 11:59:31 pm »
Tod,
Yes, I do think the presence of the little booger made me more tired prior to diagnoses. I was always teased about how much I slept and napped, but I just wasn't feeling good.
My symptoms were slow and insidious. I felt better after the surgery, but now have the tinnitus which emotionally drains me and requires me to rest. ah well, if it's not one thing it's the other ;)
Good luck with your sleep apnea test.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

cyrmom2

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Re: Newly Diagnosed in Richmond
« Reply #16 on: January 04, 2010, 12:48:07 pm »
Welcome Tod!  Hope your appointment went well today.

Cyndi
formerly from Richmond (Glen Allen)
now freezing in Ohio ;)
diagnosed 7-27-09 4 cm CPA
12 hr translab 8-25-09
Dr Chicooca & Dr Welling at OSU/The James
sliver of tumor remains on brain stem
left SSD & facial paralysis (was 6/6, 2-3/6 at 9 weeks, 1/6 within 4 months) 6 month MRI on 3-17-10.

Tod

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Re: Newly Diagnosed in Richmond
« Reply #17 on: January 04, 2010, 05:43:11 pm »
Well, not sure how to describe it. Apparently it is NOT an AN as it is not on the nerve, but apparently is a meningial tumor in the brain sheath. Oh, and it is too big..think inches.

So, I share some of your symptoms but not quite the same diagnosis. The good news is that, since the deafness is permanent, the surgeon can focus on protecting the facial and vestibulary nerves.

Fortunately, I have two university hospitals to pick from in the area with really good neuro departments.

Now I can go do my sleep study...
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

lori67

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Re: Newly Diagnosed in Richmond
« Reply #18 on: January 04, 2010, 09:01:06 pm »
Glad you got some answers, Tod.  I'm pretty sure we have some meningioma folks on the forum too.  A friend of mine just had surgery for a large meningioma and is doing great.

I'm also glad you have a few options for doctors so you can get plenty of information. 

Hope your sleep study goes well!  Sleep tight!   ;D

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.

leapyrtwins

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Re: Newly Diagnosed in Richmond
« Reply #19 on: January 04, 2010, 09:59:28 pm »
Tod -

Lori is right, we have forumites who have meningiomas - just search on "meningioma" and you're bound to find several. 

As far as the permanent hearing loss is concerned, there are options available - specifically the TransEar and the BAHA.

I have a BAHA - so does Lori (and lots of others here) - and I love it.

If you ever want to go down that road, please feel free to ask us about it.  We're here to help.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tod

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Re: Newly Diagnosed in Richmond
« Reply #20 on: January 05, 2010, 06:08:46 am »
Y'all are the best...even able to discern my meaning from my misspelling. I was kind of fried last night, stressful day personally and at work, and no caffeine all day long....miserable, miserable.  Sleep study went well, though.

So, a new day, new awarenesses. I've decided to name my tumor Bob. Apparently Bob has been with me many years and only decided to make his presence known this year. I look forward to a big coming out party for him.

Yes, I do  a lot of dark humor. When Mom died a couple years ago, such banter between my sisters and me was what got ti through...and all the jokes about the casket i built for her.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

lori67

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Re: Newly Diagnosed in Richmond
« Reply #21 on: January 05, 2010, 02:53:52 pm »
Dark humor you say? I think you'll fit in nicely around here!   ;D

And I appreciate that you named your tumor after my ex-husband! Believe me, I was thankful to finally get rid of that Bob too!   ;)

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.

ppearl214

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Re: Newly Diagnosed in Richmond
« Reply #22 on: January 05, 2010, 03:14:45 pm »
Dark humor you say? I think you'll fit in nicely around here!   ;D

And I appreciate that you named your tumor after my ex-husband! Believe me, I was thankful to finally get rid of that Bob too!   ;)

Lori

*ahem*... did I just see a halo drop? ;)  :-*  :-*

Hi tod and welcome. I'm sorry to hear that you have been having such issues but as noted, glad you are finding answers and participating here.  I, personally, named my AN "brain booger" (yes folks, I coined the name here years ago....) but we have so many that name their AN's, it helps when we "kick them out" around here.

Hang in there... again, welcome.. and all dark humor stays in "AN Community" (I get paid the big bucks around here to note that... not!)

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

lori67

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Re: Newly Diagnosed in Richmond
« Reply #23 on: January 05, 2010, 03:45:45 pm »
She's baaaaaaaack!   :o
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.

Tod

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Re: Newly Diagnosed in Richmond
« Reply #24 on: January 05, 2010, 08:42:18 pm »
Okay, I UPSed Bob and my pictures tonight to House. I have an appointment next week with the local specialist at MCV. I should have had the consult with House prior to that. I will drop of the Oto and Rad report with my PCP tomorrow to make sure he is in the loop (though my wife broke the news to him earlier today...he was somewhat shocked and distressed).

Also, I did poorly enough on the sleep study last night that I have an appointment for my machine tomorrow.

Things are moving. I let my boss know, then my staff, and then the executive staff, so all my colleagues are ready when it is time to step out for few weeks.

I've been reading a fair amount on possible procedures as well as the questions I should be asking. What am I missing?

I have already asked my family if I should go ahead and build my own casket, even though I am sure I won't need it, it would be useful in the living room as a beer cooler. And it always creates an interest with the neighborhood when I do such things.

Oh yeah, please tell me about BAHA?

Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

opp2

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Re: Newly Diagnosed in Richmond
« Reply #25 on: January 05, 2010, 09:02:35 pm »
Hey Tod, don't build your own casket just yet, unless of course you drink lots and lots of beer. If you insist on building one, build it for your recovery party. You're going to do just fine.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Tod

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Re: Newly Diagnosed in Richmond
« Reply #26 on: January 05, 2010, 09:27:24 pm »
I don't actually drink lots, but I do brew a fair amount. I am looking forward to hosting a Coming Out Party for Bob.  ;D
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

leapyrtwins

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Re: Newly Diagnosed in Richmond
« Reply #27 on: January 05, 2010, 09:44:37 pm »
Tod -

humor of all varieties is highly appreciated on the Forum by most of us - and by Lori and me in particular; sometimes we have our very own side-show  :D

You asked about the BAHA.  Here is one of my favorite links http://www.umm.edu/otolaryngology/baha.htm  Another good one is www.cochlearamericas.com

Post op I COULD NOT STAND being SSD  >:(  I found it very depressing, felt way older than I am, etc., etc., etc.  (but I have to note that not all SSD folks feel this way).

Anyway, back to me  ;) ;D

I had the BAHA implant 9 months after my AN surgery - would have had it sooner if my insurance company didn't drag their feet agreeing to pay for it - and I totally love it.  It's made a huge difference in my life - both @ work and @ home.  I recommend them to anyone who is SSD.  Like most who've had AN surgery, I wasn't thrilled with the prospect of another surgery that involved my skull, but the implant is done outpatient and is in general a piece of cake.  I even had mine with local anesthetic.

There are lots of posts on the Forum about BAHAs - and even a picture of my head with and without my BAHA device - just search on BAHA.

Jan

PS - Lori, would you PLEASE keep your halo from slipping so Phyl can get some rest???

And you thought she wasn't watching out for you, didn't you?  LOL
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

pjb

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Re: Newly Diagnosed in Richmond
« Reply #28 on: January 06, 2010, 09:28:04 am »
Tod,

Just a little more dark humor is the casket you might build insulated !!

My prayers are with you,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Tod

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Re: Newly Diagnosed in Richmond
« Reply #29 on: January 06, 2010, 11:37:52 am »
Pat, of course it would be insulated. That is important vecause my 18yo son says the best he could do for a eulogy would be to pop open a cold one in my honor.
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

 


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