Author Topic: Update on Lilan  (Read 20578 times)

Lilan

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Re: Update on Lilan
« Reply #15 on: June 17, 2009, 10:10:36 am »
The first four days (F4D) were the worst thing I've ever experienced, but after that it's amazing how you make big strides every 12 hours or so. Back to Seton yesterday, not sleeping great but best sleep yet last night with no lovely nurses checking my vitals! The hosp experience was great for me, I was very comfortable (to the extent possible!) and I really enjoyed the nurses -- they were mostly Filipina and my favorite moment was one asking me if I'd "had a bowel movement yet --- POO-POO?!??" :D :D :D in a singsong voice. That was the first time in days the concept of laughter even crossed my mind!

I was very scared too. I was brimming tears when they wheeled me into the OR. (Dr. Anaesthesia soon took care of that.) I felt confident in the drs., the plan, mentally, but I still wished that I had never heard of any of this and that me nor anyone ever had to go through it.  :( The next day in Crit Care the scheduling nurse was busy arranging staffing carefully for the next day b/c they were doing surgery on a 4-yr-old.  >:( So that moved my mind of my own misery some.

I was extremely dizzy the first couple days, couldn't even sit up for 24 hours! But then the strides came. Based on what Dr. B said about the bony spike near my FN I think it was best to take care of this now. I am grateful to be safely past the medical trauma of the surgery itself so it helps for those big worries to lessen.

btw LANancy is so great as you all know. Having her nearby has been such a help. On Day Two I asked my aunt to call her to buck me up a little, on Day Six she went and bought us Lean Cuisines and pudding cups. LADavid was great too and you could've knocked me over with a feather when I heard Lainie's voice on the phone and she has a British accent! Our lovely California blonde!

Off to shower. Thanks so much to all and more as I can!



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!

Keri

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Re: Update on Lilan
« Reply #16 on: June 17, 2009, 10:25:37 am »
Hi Lilan,
Thank you for the interesting details. I wish I had known more about my AN!
I'm so glad you get the shower - hope it feels wonderful. Most of all, I'm glad you're doing so much better.
When do you return home?
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

CHD63

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Re: Update on Lilan
« Reply #17 on: June 17, 2009, 11:11:24 am »
WOW, Lilan, you have made amazing progress in 6 days from all of the involved surgery!  Glad you are doing so well.  Don't try to do too much ..... be sure to rest and let your body heal!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

cindyj

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Re: Update on Lilan
« Reply #18 on: June 17, 2009, 12:28:51 pm »
Great to hear from YOU and to know you're recovering over in Seton!  Yes, isn't it amazing how quickly things start to get better once they do finally start getting better!  Enjoy your treks through the tunnel, but take it easy...and nap!

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

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Re: Update on Lilan
« Reply #19 on: June 17, 2009, 12:30:48 pm »
I hope I'm not too late...   ;D  Sit down during your shower and don't make it too hot in there!!!  Day 7 is when I fainted 90 minutes after my shower :)   So glad you are feeling good - ish -  :)

It is amazing how quickly our bodies can recover from the trauma!
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

heyct

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Re: Update on Lilan
« Reply #20 on: June 17, 2009, 02:14:47 pm »
Hi Lilan,

Wow, that is some kind of surgery! Glad to hear you are doing well. You thought a shower would be great, wait until you finally get to wash your hair  :D

When you're better, I'd like to find out more juicy details about it. Perhaps I'll PM later.

Your fellow He-Man,
or should it be He-Woman?,
Carolyn
Diagnosed 2/09
9 x 6mm
Translab Surgery: 5/20/09, Stanford..it was a Hemangioma!
Almost complete removal, will have to do update MRIs.
BAHA Ponto Pro 5/9/11

Jim Scott

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Re: Update on Lilan
« Reply #21 on: June 17, 2009, 02:44:47 pm »
Lilan ~

Thanks so much for the interesting and informative update.  I share your elation with the strides you've made in these few days post-op and trust you'll continue with a rapid and amazing recovery.  :)

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.

Vivian B.

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Re: Update on Lilan
« Reply #22 on: June 17, 2009, 06:52:36 pm »
Hi Lilan,

Thanks for keeping us posted and providing us with all the details. I am glad you are doing o.k. and your way to recovery.

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

sgerrard

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Re: Update on Lilan
« Reply #23 on: June 17, 2009, 11:04:27 pm »
The first four days (F4D) were the worst thing I've ever experienced

So what you are saying is that the day of surgery does not count as one of the first three days that don't count.  :D

It is sort of cool that you had a hemangioma and got the exotic double surgery approach with scary bony spikes and all. Can't say I'm jealous, though. I am glad to hear that the fifth day turned out much better and that you are starting to feel good again and are on the way to recovery.

Take it easy and rest up.

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: Update on Lilan
« Reply #24 on: June 18, 2009, 06:32:08 pm »
Hello again! Love having the forum full of understanding, kind souls who get it to report to!

I had great appts with the docs today. My stitches were removed and I'm clear to fly home on Sunday as planned. I was up and functional for six straight hours, which was a first! (Alicia, they warned both me and my aunt repeatedly about taking not-too-hot showers! Maybe you were fresh on their minds!  :D)

They gave me a scrip for vestib rehab once I'm home to speed compensation up though I am already much, much better. I'll have to adjust to SSD, but since I was down to 4% I think I must've partially adjusted already. As for my face, they graded me an HB 1 today (though I think it's a teensy weaker on that side, maybe it should be 1.2 or something, but that may only be b/c of the stiffness and swelling around my ear and jaw that are making me movement-shy and creaky.) All my vitals are great, fever gone for days, incision healing nicely.

I will have an MRI in 6 mos., then assuming all is well the first time or two they will start spacing them out further. They removed so much tumor and bone that they said the fragment they left behind could grow to 5x its current size before it would be applying any pressure to my facial nerve (and these pretty much never grow). Dr. Brackmann actually almost let the word "guarantee" pass his lips before remembering doctors can't say that  ;D, but both he and Dr. Semaan, the fellow/resident(?) who did the hemangioma paper and spent a lot of time with me, said I should basically be able to put it out of my mind in terms of any worries about it. Their study covered patients for 15-20 years to date and they are counting on me to go at least 30 years without any regrowth, so in 28 years, on Dr. Brackmann's 100th birthday, I plan to send him a photo of my 60something self then and thank him again!  ;)

(Actually, I told him I'll be thanking him sooner, in Chicago in August!)

So all in all today was a great, great day and I'm truly grateful. There will I'm sure be challenges ahead but seeing this week in the rearview mirror is a great relief.

There's something to be said for being able to go to the potty unaided, too!  ;D ;D ;D

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

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Re: Update on Lilan
« Reply #25 on: June 18, 2009, 09:56:59 pm »
Congrats on the great reports from the docs today - and for staying up six hours straight! Based on both, I'm sure you'll sleep great tonight!  :)

Nice way to celebrate your "one week post-op" milestone.  ;D

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

moe

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Re: Update on Lilan
« Reply #26 on: June 19, 2009, 12:50:01 am »
Lilan,
So glad to be reading the posts of how you are doing better by the day and now knowing that you are able to fly home must give you a sense of elation!
It's like walking on cloud 9 when you know you survived brain surgery and the important nerves are intact.
Take it easy, lots of rest and naps and foods that sound good to you.
Congrats on rock'n it!
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

ppearl214

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Re: Update on Lilan
« Reply #27 on: June 19, 2009, 06:59:57 pm »
Lilan,

congrats to you and sending wellness wishes your way. See you in August in Chicago.

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

Staceyann

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Re: Update on Lilan
« Reply #28 on: June 21, 2009, 12:56:36 pm »
Lilan:
I am new to the site and have read your posts with interest. Best wishes to you in your continued recovery!
I have facial nerve hemangioma (1.5cmX 1.5 cm X 1.4 cm) that was present on MRI  as far back as 1997 however, all imaging that I had done between 1997-2008 was read as normal. I currently am at HB 2-3 and have moderate hearing loss ,pulsatile tinnitus and intermittent vertigo and oscillopsia.
 I am currently in watch and wait mode; with surgery planned when either there is facial paralysis progression or tumor growth. I have been told that when the hemangioma is removed my facial nerve will be cut with complete facial paralysis and complete hearing loss as the results. Since I have had facial nerve weakness for so long I also was told that the the likelihood of  facial nerve regeneration is poor.
Your story gives me hope that there may be another option. I will be sending my CT results to House for consultation.
BestWishes
Stacey


« Last Edit: June 21, 2009, 01:10:22 pm by Staceyann »

Cheryl R

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Re: Update on Lilan
« Reply #29 on: June 21, 2009, 01:13:02 pm »
Staceyann,   I had a facial neuroma removed in 2006 at Univ of Iowa.           We knew ahead it probably was one and my neurotologist said he would then take some nerve from by the ear and graft in if the facial nerve had to be severed.     It was and the graft was done.           We knew it would be several months before improvement and it was.           I do not have complete movement but enough my face looks ok at rest.     I have eye closure.          Still some times of some dryish eye but good most of the time.                       I feel very lucky that was able to do this.          It might be something you can ask your dr if he has done as in hearing others  I don't think alot of drs do it.                          I have NF2 and so far 3 tumors removed and so hope no more. The other 2 were ANs.                          Good luck with your situitation!           
                                                                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care