Author Topic: Update on Lilan  (Read 20620 times)

Staceyann

  • New Member
  • *
  • Posts: 4
Re: Update on Lilan
« Reply #30 on: June 21, 2009, 01:40:55 pm »
Cheryl:
Thanks for the good advice!
Stacey

Lilan

  • Sr. Member
  • ****
  • Posts: 372
Re: Update on Lilan
« Reply #31 on: June 21, 2009, 04:03:15 pm »
Stacey, please keep me posted as you talk to House -- ask to look over their new study -- and see what they have to say about your case. We're making He-Mans the "in" thing this year around here, aren't we  ;)  HeyCT is right there with us.

Thanks everyone for the continued support. Just arrived back home from L.A. a few hours ago, and hitting my sofa is heaven (with my Tivo, as alumns of Seton TV will understand)  ;D. My dogs were sure happy to see me. Lots of time to catch up on computer in the coming weeks and lots of thanks to all of 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!

NL

  • Sr. Member
  • ****
  • Posts: 251
Re: Update on Lilan
« Reply #32 on: June 21, 2009, 06:24:14 pm »
Hey Lilan,

I'm so happy to see you're back posting from home with your happy pups! Hope you had a good flight home!

It was wonderful that you felt good enough to spend your last day in LA the same way you spent your first - out to lunch at The Grove. And you looked so great - no one there had even the slightest idea you had brain surgery nine days earlier.  ;)


One happy postie, 6-20-09

Though I wish you would have never had the reason that brought you to LA in the first place, I was really glad we had the chance to meet. And I'll be looking forward to getting together again in the future - when there's no surgery involved.  ;)  ;D


(Here I am saying good-bye to a very relieved Lilan...or Li'l AN  :))

Keep us updated when you can.

But in the meantime - enjoy your sofa, the TiVo...and the naps,

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

yardtick

  • Hero Member
  • *****
  • Posts: 1321
  • I have to keep smiling, or else I WILL cry.
Re: Update on Lilan
« Reply #33 on: June 21, 2009, 06:30:19 pm »
Such beautiful women to give as inspiration.......an let's not forget the hansome Bob, he's on another thread  ;D

Anne Marie ox
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Update on Lilan
« Reply #34 on: June 21, 2009, 07:00:21 pm »
Looking VERY good, Lilan!  ;D

Thanks for posting the pictures, Nancy!

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

Kate B

  • Hero Member
  • *****
  • Posts: 743
    • AN World
Re: Update on Lilan
« Reply #35 on: June 22, 2009, 06:38:04 am »
And you looked so great - no one there had even the slightest idea you had brain surgery nine days earlier.  ;)


Isn't that the truth!!!! You look wonderful Andrea.


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

  • Sr. Member
  • ****
  • Posts: 372
Re: Update on Lilan
« Reply #36 on: June 22, 2009, 06:41:11 am »
Nancy, meeting you was a very large silver lining on this cloudy year and I know we will keep in touch! Maybe I'll have a followup MRI out there sometime even -- or heck -- just a true vacation!  :D  

To everyone who has posted on here, or on the forum in general, during those dark, slow moments of the early days in the hosp I don't know what I would've done without the mental picture of all of you in mind! Just knowing so many people get through this in good spirits was such an inspiration. My friends and family are flabbergasted with how great the forum was -- how supportive, and how well-prepared we all were for the symptoms, recovery, House, Seton -- it was just hard to imagine how much more stressful it would've been not to have such clear ideas of what to expect.  :-* :-* :-* to everyone!

As for the F4D in my case (maybe because my surgery ended at 7 p.m. or so, so the first day was over just with the operation itself), I think the thing is that "days" mean nothing to you at that point -- time was passing for me in about 2-min. increments! I felt like I'd suffer the worst mental and physical 10 hours of my life, then look at the clock and it'd be just 2 minutes later  :o :o :o :D :D :D  So I may call it the F2880, the First 2,880 2-minute increments. Not very catchy, I admit.  :)

Being home is great. I finally got nearly 8 hours of sleep overnight, way more than I'd had yet. And lots more activity at home, even trying to keep it gentle, which is sure to improve my function. The flight went well and wheelchair service through the lines is the only way to go! I don't think I would've done so well standing standing standing and trying to push through crowds, etc. But with the wheelchair service it went fine. I emptied what was left in my wallet tipping the wonderful, cheerful women who navigated us through both airports!

 
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

  • Hero Member
  • *****
  • Posts: 1434
Re: Update on Lilan
« Reply #37 on: June 22, 2009, 07:20:26 am »
Hey, Lilan!  Great to hear you're home - isn't it wonderful!  So glad you were able to spend time with Nancy - didn't it make all the difference in the world having met her prior to surgery.  She and David and Lainie are really providing a great service out there!  I did the wheelchair thing at the airport also - yes, the only way to go!

Keep us posted on how you continue to recover - congrats on being a postie!

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

alicia

  • Full Member
  • ***
  • Posts: 139
  • it is well
Re: Update on Lilan
« Reply #38 on: June 22, 2009, 03:15:05 pm »
Welcome home!  I understand how good it is to be home!  It is nice to break the hospital/seton routine.  I hope you continue to make great improvements everyday!  I can't tell a difference day to day anymore, but I sure can week to week - so you have a lot of bright days ahead.  Enjoy these do nothing but rest days.  Take care, A
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

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Update on Lilan
« Reply #39 on: June 22, 2009, 05:44:00 pm »
Lilan ~

Congratulations on a very successful surgery.  You look absolutely terrific!  Thanks for the very kind and sincere words about the members of this site and the forums.  We're all pleased at your outcome and we want you to have a smooth and rapid recovery so, take it easy and post as you're able....and enjoy your postie' status!  :)

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.

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Update on Lilan
« Reply #40 on: June 22, 2009, 06:37:34 pm »
Lilan,
Wow that was fast! Home and resting. You did marvelous. Keep it slow and steady......

I'm sure the airport people were wondering why this pretty woman needed a wheelchair!

Take the good days and the bad days in stride. Baby steps, but you know.

Let us know how you continue to recuperate.
Maureen
Those were very sweet words about the forum. I agree!
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

Lilan

  • Sr. Member
  • ****
  • Posts: 372
Re: Update on Lilan
« Reply #41 on: June 23, 2009, 07:00:34 am »
More kind words! Love it!  :)

I think the trained eye can look at those pictures and see how stiff my neck is. LOL. Dr. House was more worried about my neck than anything else -- he was coaxing, cajoling and teasing me into trying to move it to the left -- I said it felt like granite. I could not move it a millimeter for a couple days. Now I can move it 90 degrees again but it sure took awhile to get there!  ;D

I remembered two things to follow up on that have come up on here:

They did not make me remove my fingernail polish after all (thanks Dr. Stefan!)  :D  ...

and at 10 days out, my first night back home, I spent the night alone with no problem! I know some posters who live alone have wondered how that goes. Obv. it's individual but I felt quite ready for it, knowing I have a good friend a few doors down just in case. It was very restful to just be home alone with the dogs again! First time I'd gotten anywhere near 8 hours of semi-uninterrupted sleep.

If you live with people, great, but if you don't, I think you kind of play hostess a bit if the overnighters are "guests," and I was relieved not to have to do that at first, to just let down and relax into my usual routine. That's one thing I loved about Seton -- I was no more in charge of running the "household" or knowing where things were, etc., than anyone else and could really just chill.  :P

I hope I'll have no major news to report for a long, long time  :D  but will try to clean up any loose ends about tidbits of advice or my progress as they occur to me in the hopes that it helps others! I am so happy we have at least three he-mans (actually, we're all she-mans) posting here now -- that's three more than I was able to find any info on a year ago when I first heard that word!

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!

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Update on Lilan
« Reply #42 on: June 23, 2009, 09:38:26 am »
We love sending kind words :)
What a blessing to be home and get 8 hours of sleep uninterrupted!
Every day will be a little different. You may feel GREAT one day, over do it without realizing it, and then the next day feel like doo doo.
It's like a little roller coaster ride of emotions and body aches.
Rest and keep up the great work.
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

Lilan

  • Sr. Member
  • ****
  • Posts: 372
Re: Update on Lilan
« Reply #43 on: June 27, 2009, 07:57:22 am »
If there's a Laziest Person in America contest, I have my entry fee ready and plan to win!  :P

Weather was super-hot this week and I spent lots of time lounging in the air conditioning. I went to a friend's for dinner one night, and had a friend over for dinner last night (takeout) -- went out for one lunch out and one mani/pedi -- and a few short walks -- and that was about it all week!  :D  I really wanted to get past that two-week mark and avoid the heat! But just being at home I'm doing so much more -- very light housework, dog care, etc. -- a lot more movement than I was getting at Seton.

Just one more day of steroids, tomorrow. Slept really well last night, probably the best yet. And Monday I start my vestib therapy, so then I'll have 3x/week appointments to get to and that will almost make me feel "busy"  ;D  I think I'll be driving soon, but kind of want a second opinion maybe from the therapist. Overall I feel more like I'm suffering a lack of confidence/ease with movement more than any actual problem, so I'm thinking the exercises will help a lot to build that up in a safe place.

I still have a tennis ball on the side of my head -- a bump of fluid that needs to settle away -- now almost paved over by hair already (which also feels rather tennis-ball-like at this length!). With my combover, it's not even visible (so people probably wonder why I'm so darned slow on the street)! I'm also not moving my head around normally -- my neck doesn't feel as stiff but I seem to be trying to hold my head very still/stable so my movement is not natural.

All in all starting the vestib will be the next big step! Hope everyone is enjoying summer!  8)



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!

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Update on Lilan
« Reply #44 on: July 01, 2009, 11:22:31 pm »
We all have a free ticket to be lazy for AT least 4 weeks!
After all, we had brain surgery.
Sounds like you are doing great.
Keep up the good work, and driving -well, stick to the side streets and see how you do.
Slow and easy. You may find that the vestib  therapy makes you more tired at first, but I guess time will tell.
Enjoy your summer.
I live near Seattle and this is MY time of year. Beautiful
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