Update on Lilan

[Lilan]

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?!??" 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!

[Keri]

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

[CHD63]

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

[cindyj]

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

[alicia]

I hope I'm not too late...    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!

[heyct]

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 

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

[Jim Scott]

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

[Vivian B.]

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

[sgerrard]

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. 

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

[Lilan]

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!  )

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  , 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! 

[NL]

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. 

Nancy

[moe]

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

[ppearl214]

Lilan,

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

Speedy recovery to you!
Phyl

[Staceyann]

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

[Cheryl R]

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