Author Topic: Lilan's hot date  (Read 29001 times)

Lilan

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Lilan's hot date
« on: April 28, 2009, 05:48:28 pm »
June 11 @ House: I'm on the calendar! All the pieces have fallen into place. The plan is middle fossa with Drs. House and Brackmann.* My motto: "I'll be back as good as new -- no, better than new!"

(Or at least better than NOW. LOL.) :D

*So now this whole situation is THEIR problem, and not mine anymore! ;D Such a relief to feel that way. It's up to them and the man upstairs. I've done my grueling homework -- for almost a year -- and now plan to relax and hand it over to them.






Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

ppearl214

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Re: Lilan's hot date
« Reply #1 on: April 28, 2009, 06:52:30 pm »
Lilan, SO glad to hear the monkey is off  your back with the decision-making process! Congrats!  And as you noted... its now their problem, let's get you done and on the road to continued wellness!

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

leapyrtwins

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Re: Lilan's hot date
« Reply #2 on: April 28, 2009, 09:02:27 pm »
Lilan -

glad you got a date and even more glad you put it on the AN Calendar so David can remind us in his weekly update so we all can wish you luck.

As Phyl said, it's great to get the monkey off your back  ;D

Congrats on the decision-making milestone!

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

sgerrard

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Re: Lilan's hot date
« Reply #3 on: April 28, 2009, 09:57:08 pm »
Lilan,

I can't quite remember what a hemangioma actually is, but if anyone does, I would expect Dr. Brackmann to, and to know what to do about it.

Sit back and await your destiny in peace.  :)

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.

Lilan

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Re: Lilan's hot date
« Reply #4 on: April 29, 2009, 07:16:30 am »
Thanks all!

(A hemangioma a blood vessel tumor -- because of the location of this one, it's basically just like an AN in terms of symptoms and treatment. The differential diagnosis includes meningioma and AN.)

Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

ppearl214

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Re: Lilan's hot date
« Reply #5 on: April 29, 2009, 08:54:44 am »
Thanks all!
(A hemangioma a blood vessel tumor -- because of the location of this one, it's basically just like an AN in terms of symptoms and treatment. The differential diagnosis includes meningioma and AN.)
got a small one on my liver... a dear friend/co-worker had a large one on her liver.... sending those wellness wishes your way Lilan... .let's get you done and set! :) Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: Lilan's hot date
« Reply #6 on: April 29, 2009, 03:44:23 pm »
Hi, Lilan ~

Just wanted to offer my congratulations on your finally having a surgery approach and a date settled.  This (surgery) decision is always a major obstacle to overcome for AN patients and I know you'll enjoy the relief of having it accomplished.

FYI: during my AN pre-op testing, the CT scan found a large 'mass' on my liver.  The doctors were sure it was cancer.  My neurosurgeon even canceled my AN surgery! ("it wouldn't be worth it").  My PCP called and practically offered his condolences on my imminent demise.  The oncologist I was referred to was pleasant but grim and out of my earshot, warned my wife that I might not have six months to live.  He then ordered a biopsy of the 'mass'.  The biopsy showed that it was a large hemangioma.  Because I was asymptomatic, the oncologist said no treatment was necessary and happily signed off on my AN surgery.  Everyone was elated, especially me (and my wife).  I underwent my surgery a week later.  The rest is history.  :) 

You have my wishes and prayers for a successful, complication-free surgery at HEI in June. 

Jim
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.

Lilan

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Re: Lilan's hot date
« Reply #7 on: April 29, 2009, 08:03:35 pm »
One neuro said if mine had been even 1 inch away from where it is, I would likely have died happily at 110 years old never having known I had it. Location, location, location! Lucky you two just having them on your livers!  :o :D

Seriously though, Jim, that must have been an absolutely terrifying time. Clearly there was a larger purpose in store for you -- becoming an AN postie and helping all of us! We needed you!
Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

suboo73

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Re: Lilan's hot date
« Reply #8 on: April 30, 2009, 04:19:24 am »
Lilan,   CONGRATS on the 'hot date!'  You sound so relieved and i am happy for you!!!  ;D
Keep us posted, ok?

-----
Jim - i have to say, WOW - '6 months to live' and your PCP is offering condolences?
Your poor wife!  - But Lilan has hit the 'nail on the head' - it was not your time, and you are obviously here for a larger purpose!
And we, here on the Forum, are grateful.
(Lilan - forgive the hijack!)

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Vivian B.

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Re: Lilan's hot date
« Reply #9 on: April 30, 2009, 05:42:29 am »
Hi Lilan,

Glad to hear you have a date. Soon it all be over and on your way to a full recovery. Good luck. Let us know how you are doing.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Lilan

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Re: Lilan's hot date
« Reply #10 on: April 30, 2009, 09:07:29 am »
Yet another question: (Knowing results may vary, but generally):

Am flying home 10 days after surgery. Can I be alone at that point with neighbors very nearby, etc.? I am thinking I might want some alone time by then, maybe a friend to sleep on the sofa for a couple nights and people checking in during day, but not necessarily staying with me 24/7 by that point.

I can also decide the week after surgery but before I come home, I suppose, and call someone into 24/7 action if I'm still wobbly at that point.

(I live in a city condo so not a lot of extra room -- that's why I'm thinking I may just want some breathing room by then if possible. Having a houseguest in a small environment can add stress no matter how helpful they are, you know? I am thinking as long as I'm ambulatory and people are dropping by a couple times a day, I may be fine just loafing and napping on my own.)
Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

cindyj

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Re: Lilan's hot date
« Reply #11 on: April 30, 2009, 02:05:26 pm »
I did not need anyone with me once I was home from LA...but, as you said, results may vary...I couldn't drive myself to the grocery store, of course, but I certainly felt ok to be alone all day...and really wanted to just be alone for the most part anyway.  Would certainly be good for someone to at least check up on you, though...

Keep asking as many questions as you'd like. 

June will be here before you know it! 

By the way, I found out just today that I have a hemangioma too, but it's on my liver, just like you, Jim!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Kate B

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Re: Lilan's hot date
« Reply #12 on: May 01, 2009, 07:36:53 am »
Yet another question: (Knowing results may vary, but generally):

Am flying home 10 days after surgery. Can I be alone at that point with neighbors very nearby, etc.? I am thinking I might want some alone time by then, maybe a friend to sleep on the sofa for a couple nights and people checking in during day, but not necessarily staying with me 24/7 by that point.

Hi Lilan,

You have a hot date with a very respectable group of doctors. I had a "date" with Dr. Brackmann in November 2001.

By the time I arrived home, I really didn't need constant attention...I just remember needing to sleep. It was also nice to have meals made for me that first week for my family, cuz I was tired.    I think you'll be okay and you will know more after your surgery as your reaction to it will be your own.

All the best,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Lilan

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Re: Lilan's hot date
« Reply #13 on: May 01, 2009, 01:14:24 pm »
Thanks!

Genesis of this: I was at book club the other day and a friend said in a loud, excited voice, "I hear you have a DATE!" (meaning for surgery) But 16 female ears perked to attention instantly and definitely weren't thinking of surgery when she said it!  :D  (Too bad she didn't say "a date with a doctor" -- would've sounded even better. LOL.)

I am amazed at the superlatives I've read here and when searching elsewhere about Dr. Brackmann. I suppose the life-altering nature of it inspires the deep reactions. Even one of the doctors I saw here, like an 18th opinion to ask about radiation, when I said I would likely go to House, asked "Are you going to have Dr. Brackmann do it?" in this almost reverential tone.

Beyond his surgical experience, he must also be an exceptional human being.


Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

Lilan

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Re: Lilan's hot date
« Reply #14 on: May 01, 2009, 01:21:02 pm »
In terms of shopping for my date, today I found cute, very soft Nick & Nora PJs (button front) (light blue with design of pink flying pigs) ;D and robe @ Target. Also got slippers with the invalid equivalent of cleats. (Soft and cushy on top, but impressive rough bottom that I think will be very non-skid.)

I have a collapsible hamper set up that I'm just tossing things into as I buy them so packing (I hope) will be a breeze.


Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!