Author Topic: Update on Lilan  (Read 20581 times)

leapyrtwins

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Update on Lilan
« on: June 11, 2009, 08:11:12 pm »
I just received the following email from Christina, a friend of Lilan's.

"Just heard from her aunt and am happy to report that while the surgery took a little longer than expected, the doctors said that all went well.  She will be in recovery most of the next 3-5 days, but may be able to check email next week.   Thanks for all your good thoughts and well wishes, I know Andrea very much appreciates it!"

Lilan (aka Andrea in "real life") asked me to put a link to her "hot date" thread in this post, so that others on the forum could follow her story.  So here it is http://anausa.org/forum/index.php?topic=9446.0

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: Update on Lilan
« Reply #1 on: June 11, 2009, 10:31:46 pm »
Thanks for the update, Jan.  ;)

Good to hear that Lilan is off to a good start.

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.

Keri

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Re: Update on Lilan
« Reply #2 on: June 12, 2009, 07:10:26 am »
Good to know.
Thanks!
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

ppearl214

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Re: Update on Lilan
« Reply #3 on: June 12, 2009, 08:50:06 am »
Thanks Jan for the update. Wellness wishes continue....

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

moe

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Re: Update on Lilan
« Reply #4 on: June 12, 2009, 09:12:17 am »
Good news so far.
Thanks!
Moe
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

NL

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Re: Update on Lilan
« Reply #5 on: June 14, 2009, 04:11:34 pm »
I just want to add in an update that I got from Lilan's aunt (who is staying with her at the hospital) last night.

Her aunt said Lilan's facial movement is fine, though she has a slight swelling under her eye. Other than that she is just counting down the "first three days" - which seem longer than she thought they'd be!

Lilan also said that to preserve her facial nerve, they ended up doing the surgery the way she had explained it in her last pre-surgery post:

So they left the option open of doing middle fossa (best access to tumor), taking what they can, then ALSO going in translab to take care of the vestibular nerves (whack!) if that's the only safe way to reach them (I presume to avoid having to wiggle past the facial nerve).

Hopefully we'll get another update from her friend Christina or her aunt soon -  but in the meantime, I just wanted to share some good news.  :)

Nancy


1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

Lainie181818

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Re: Update on Lilan
« Reply #6 on: June 14, 2009, 05:03:14 pm »
Thanks Nancy, great to hear she is on the road to recovery.
Lainie

alicia

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Re: Update on Lilan
« Reply #7 on: June 15, 2009, 10:13:17 am »
Thanks for the info NL!  I have been on pins and needles! 

Hang in there Lilan!!!  It does get better!  Alicia
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

Jim Scott

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Re: Update on Lilan
« Reply #8 on: June 15, 2009, 03:22:55 pm »
Nancy ~

I really appreciated the positive update on Lilan, as did many others, I'm sure.  Thanks!  It's great to know how well she's doing after all that surgery. 

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.

Kate B

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Re: Update on Lilan
« Reply #9 on: June 15, 2009, 05:03:28 pm »
Just a quick update...

I spoke to Andrea on Sunday night and she was able to walk around the floor at least once and planned to attempt  another walk around before retiring.  The bandage is off already!  She has been running a temperature.  She is glad that she is over the 24 hour hump and thinking she might be discharged on Tuesday and then off to Seton Hall until Sunday.  As expected, she is tired. She sounded good on the phone.

As indicated in an earlier post, they did Middle Fossa to remove the tumor (not hearing preservation as she was only 4% in that ear) and then Trans Lab to get at the balance nerve.  Her surgery was about 5 1/2 hours.

Kate
« Last Edit: June 15, 2009, 05:05:36 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

moe

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Re: Update on Lilan
« Reply #10 on: June 15, 2009, 05:25:49 pm »
Thanks for the update, Kate.
Wow, a 2 approach surgery, that's a new one :o
Tell Lilan to keep truckn!
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

Jeepers

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Re: Update on Lilan
« Reply #11 on: June 16, 2009, 04:54:08 am »
Thanks for the updates.
~~~~~~~~ Fast healing vibes to Lilan ~~~~~~~~   :)
Diagnosed 2003-right side-1cm AN
Wait and watch for 6 yrs; 2009 showed growth w/balance issues
Translab 7/9/09 - Drs. Battista/Kazan (Hinsdale IL); SSD
Recovering well!

leapyrtwins

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Re: Update on Lilan
« Reply #12 on: June 16, 2009, 05:53:08 am »
Thanks for the updates Nancy and Kate.

Kate -

did I read your post correctly?  Lilan actually had 2 surgical approaches?  Very unusual.

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

Keri

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Re: Update on Lilan
« Reply #13 on: June 16, 2009, 08:52:59 am »
and it took half the time of what one takes sometimes! that does seem different. well, we'll all be wating to hear the details! i'm glad Andrea / Lilan is feeling a bit better.

best wishes,
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Lilan

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Re: Update on Lilan
« Reply #14 on: June 17, 2009, 10:00:32 am »
Back on the Seton computer for the first time! Am a little dizzy but more concerned about the gentleman sitting a foot away from me b/c my first shower is yet to take place, in 10 mins or so!  ;D ;D ;D

So yes, to add to my unusual tumor I had the unusual approach described above. Hemangiomas start high (geniculate ganglion) so as Kate indicated MF is the way to get at them regardless of hearing. They also erode bone, and Dr. Brackmann says there was a particular sharp spot ("spicule") that would've been the long-term problem (slicing against the facial nerve). So they were able to widely decompress that area (drill away scary spikes) and also got almost all of it out. Since these are blood vessel malformations rather than true tumors -- more birth defect than anything -- they do not see them grow back. They did leave a tiny piece at one point where the nerve bends to avoid coming at the nerve too aggressively, but they've had patients at 15, 20 years and counting with no regrowth (and now there's room for it to grow if need be -- and room to radiate it should it need further treatment!) So that took care of the biggest future problem, facial nerve.

Because my hearing was so dreadful and balance/dizziness were my No. 1 current complaint, they did the labyrinthectomy separately. There was no point trying to save any hearing with it at 4%, so that way it just removes the whole issue of jiggling around the FN.


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!