ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Lilan on April 28, 2009, 05:48:28 pm
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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.
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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
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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
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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
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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.)
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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
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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
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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!
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Lilan, CONGRATS on the 'hot date!' You sound so relieved and i am happy for you!!! ;D
Keep us posted, ok?
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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
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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
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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.)
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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
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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
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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.
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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.
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I have another tip for planners: The most reliable way I've found to search for what-to-bring and recovery posts is to search the forum for "pajamas" and also "pjs."
:)
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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.
Lilan -
these are the greatest PJs; extremely comfy. I have a pair with sock monkeys and my sister has a pair with pink flamingos. Target also sells matching sheet sets for your bed.
Jan
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I have the sock monkeys too - guess we are all a bunch of Target shoppers! ;)
K
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Beyond his [Dr. Brackmann's] surgical experience, he must also be an exceptional human being.
That is what I have heard. He is legendary for reading MRI's, and for carrying the torch for the translab approach to AN surgery. I think many surgeons have trained with him, so he has the status of mentor to many. I have heard that he will take a phone call while in the middle of a surgery, to help out another surgeon who has encountered a problem. And besides his dedication, accounts of personal encounters seem to always indicate that he is personable, very bright, and very convincing. In a word, charismatic.
If more people had acoustic neuromas, he could probably get elected president. ;)
Steve
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I received my packet from House yesterday. There was nothing scary that I hadn't already known, and there's a "routine" nature to it that's reassuring.
However, it's true: no nail polish. I still think this is the craziest thing I've ever heard. (Was complaining on another thread when I read that this was common during surgery anywhere: THIS is the high-tech way they monitor your oxygen levels, by seeing if your nails turn blue? ??? Disturbing. Shouldn't there be a multi-million-dollar machine doing this so I can keep a decent pedicure?)
In better news, they allow hair-washing at five days, which is a relief.
For my shopping pre-surgery friends: I also found awesome pajamas at TJ Maxx. Now I have too many and will have to return something. :D
Booked my flights yesterday so everything is coming together. My friend who's flying home with me has a lot of miles, and the only award travel available the day we needed it was in first class, so she used miles for that. This led me into a long series of phone calls to reactivate some of my own expired miles so I had enough to do the same! There were some fees to do that but it cost MUCH less, a fraction, of "buying" business class outright so it's worth looking into for anyone who may have "old" miles (expired 2002 or after I believe). And of course I booked the red-carpet wheelchair service for the way home! So, we've done all we can to make the flight comfortable and the fact that I won't have filthy hair is already making things look up for me. :D
I am going to travel to L.A. on Monday and do a studio and/or city tour on Tuesday, so I can settle in and enjoy myself for a day before the pre-op on Wednesday and surgery Thursday!
I am also trying to program my brain ahead of time for how to feel afterward. I am imagining waking up, smiling, being hungry, walking -- to "project" onto my mind the things I need to do the first couple days. Training my muscle memory in advance. I also made a "vision board" and recommend that. It has already given me a clear image of success and calm to focus on. (Small posterboard collage of flowers and pretty pictures from magazines representing good outcomes: feminine images representing balance, hearing, big smiles, strong heart rate.) I plan to take it with me.
On it I also used a really cool picture-illustration of Capt. Sully to represent the qualities I wanted in my doctors, before choosing where to have surgery. A friend of mine, not knowing this at all, looked up Drs. House and Brackmann online when I told her I had decided to go there and e-mailed me right away to say "One of your doctors looks like Sully!!!" So I showed her my collage.) ;)
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Lilan, You might ask House if it is just the pedicure you want to keep. It is the fingernails they want the polish off. Doing the O2 saturation is more than watching if the nails turn blue. It is more of a way of watching the blood in the finger for the decrease in circulation. I was never good at explaining it exactly as patients always asked how it worked. I never did see it used on toes unless you were an infant and we did do it on their big toe. There was a special oximeter tape we used on them. I do know that is an annoyance to keep a clip stuck on yiour finger while in the ICU.
Good luck with your surgery. Cheryl R
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Lilan,
Sounds as though you're doing a great planning job!
You are very smart to book a first-class flight home from LAX -- I don't know your destination, but mine was New Jersey, and it was very pleasant to have that extra, more relaxing space for a post-surgical journey. And maybe you won't need the wheelchair -- first-class has a separate security check-in area and we didn't have to wait on line at all.
And your friend is right -- Dr. John House does look a lot like Capt. Sully! He was my surgeon and was absolutely wonderful. He definitely exudes those Sully-like traits of confidence and competence. You will be in wonderful hands at House. Best wishes for a safe journey and a successful surgery.
Catherine (JerseyGirl 2)
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Cheryl, you are nothing less than a genius. :D I asked the surg coord and she says toenail polish is fine.
Please understand that after a Chicago winter, I LIVE for every moment I can spend in bare feet and sandals so this is crucial to me. 8)
So yes, JG2, I'm in Chi, and it's a four-hour flight, plus with 90 mins or so at the airport and travel time to and from ... It'll be a long day any way you look at it. So the extra breathing room will be nice! Thanks for the good wishes!
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Thank Lilan, not a genius but just a retired nurse as of a year ago. There are others on here too so not hard to get some info anyway. Good that you found out so you can keep the pretty toenails. Ones needs all the fun stuff when going thru this surgery and the wonderful tight dressing. I always took pjs so could look a little better once the IV was capped. Karen Neuburger ones are my favorite.
Good luck with your surgery! Cheryl R
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I agree the little dignities make a huge difference.
I went to one MRI place where they had a choice of hospital gown or scrubs=pants and shirt. I was so thrilled. Somehow I felt SOO much healthier and "more like myself" in the scrubs! Don't love the gowns.
And, it's nice to feel like you can control a few of the little things when you can't control the bigger ones.
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Nice meditation for pre-surgical patients:
http://www.jbennette.com/resources/healing_before_surgery.htm
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Do any House alums have an opinion on bringing a laptop? I was not planning to bring one, knowing I won't want to tinker with it probably, but my aunt who is coming with me might like to have one available to get a few things done. Is there any Wi-Fi? Is it safe to have something like that @ Seton? Alternatively, how accessible is the shared computer -- would she be able to do some work there if need be?
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Morning! My mom took her laptop w/ her - I never felt up to posting, but I dictated to her eventually...there is free WiFi at House (right across from the hospital). Don't think there was any at Seton, but they do have the two computers in the kitchen area that can be used. It is certainly easy to get on one - not many people standing in line ;), but they are QUITE old and very slow. Wouldn't think they'd be very conducive for actual work of any sort, but they're fine for posting on the forum, if she's patient...My mom actually stayed at a local hotel, so she had service there that she also used.
Cindy
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I agree with Cindy -- bringing your own laptop would be best. The computers in the commons room at Seton are ancient and slow -- you wouldn't want to plan on using them for anything work-related, etc. I think there's a hook-up at the desk in the Seton lobby where you can plug in, but it's not super-fast either. WiFi at House would be best, and as Cindy says, it's just across the street.
Catherine (JerseyGirl 2)
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Lilan,
Sounds like you are preparing yourself emotionally in a very positive way! Good for you.
Are you donating blood prior to surgery? Do they do that for hemangiomas?
Take care and keep up the good pre op work!
Maureen
Exercise too or walk or whatever you do to stay active prior to surgery too-that helps in recovery. ;)
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Thanks everyone!
Computer: I'm using the term "work" a bit loosely. She is working on family geneaology stuff and was hoping to use some downtime to transcribe documents relating to that. So it's not like work-type of deadlines or whatnot and Internet access is not so crucial, it's more the word processing side of things.
Blood: Yes, I will donate blood because of it being a hemangioma, aka blood vessel tumor. They still feel they hopefully won't need it, but they are having me donate one unit of whole blood just in case. This has a shorter shelf life than red blood cells, so I donate May 29. I am not crazy about doing it so close to surgery, but I would certainly rather have it available if I need it!
Exercise: I am so exhausted and dizzy it's been hard to do much, but I have been using the elliptical machine and light weights at my gym at least once a week on the weekend, more if I can take a day off work at some point, as I have some weeks. That way I can clutch the sides of the machine to brace myself. :o Walking is not comfortable for me right now, though I do walk my dogs every day and with both of them pulling in different directions, it's indeed a challenge to my vestibular system -- if not the most grueling cardio workout at their pace ;) Now that the weather is nicer I am forcing myself to do some more walking outside, but it's difficult. If I break my gaze, I get a very dizzy head rush.
Which at least confirms my decision to have surgery. Can't go on like this!
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Tomorrow morning I donate blood :P and am hoping it doesn't make me dizzy! (Though how would I tell at this point anyway?) ??? I took the day off work so I can just relax afterward if necessary.
They told me not to have caffeine before donating; needless to say, I said that was NOT going to be an option :D but I did promise to drink extra water to make up for it!
I have been extremely dizzy all week, and today my ear was beeping at me -- a distinct, electronic beep! It's as if my acoustic nerve is paging me for help. :( >:( The poor thing.
So, I'm not (mentally) fighting the idea of surgery as much as I probably would be at the two-week mark if I were feeling OK! Two weeks from right this minute I will be a postie!
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Lilan -
I hope the next two weeks go quickly - and that the surgery puts an end to your extreme dizziness :)
I'm a regular blood donor (every 8 weeks for many, many years) and the reasoning behind the caffeine is because it actually slows down the flow of the blood. While liquids are important, water is the beverage of choice. Being well hydrated is key; caffeine tends to have the opposite effect.
Jan
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Thanks, Jan! I am trying to just sip a tiny amount of coffee this morning (just enough to fend off a headache), offset by a huge glass of water! I also cut down on caff for the last few days and added extra water.
I admire you for giving blood so often!
Thanks also for the good wishes.
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Well, the deed is done!
At first no blood was flowing -- after several minutes, zero! I thought of Jan's post and felt a stab of guilt over the 1/4 cup of coffee I'd had this morning!
:D
But then they adjusted something and I was done 8 minutes later, so all was very well. I don't even feel any dizzier than usual. ;D
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Sometimes they have to adjust the needle because it can be up against the wall of the vein. Once they move it, it allows the blood to flow freely through the vein.
So, don't lose any sleep over the coffee ;)
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Wow, do I feel lousy. :P
Whatever thread I was hanging by seems to have been clipped with the blood donation! I think a combo of the physical and the mental -- entering the last week before surgery. It's definitely at least part physical though -- I'm significantly dizzier, don't think it's just short-timer's syndrome. In fact, I was going to enjoy this weekend and instead wound up on the sofa for three days (and left work hours early today -- just couldn't keep upright and my eyes focused).
Must.get.this.thing.out.of.my.head. :o :o :o
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Also I can't take Advil now, this close to surgery (I stopped a little early, last week). I wonder if that had been keeping the inflammation at bay somewhat. When I did a course of steroids followed by high-dose ibuprofen it helped a LOT -- even got rid of my dizziness for several months -- so even the regular Advil that I was taking probably five days a week was probably helping at least a little, and now I'm noticing the loss of it.
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Lilan -
sorry you are feeling lousy :( I don't know if it's related to giving blood or not. Did they tell you to drink lots of extra fluids after donating to replenish the blood that they took? Also to avoid alcohol, smoking, and caffeine - if you partake in any of them - and not to do any heavy lifting or strenous exercise for at least 12 hours. In addition, it's important to eat regular meals.
If what you are experiencing is directly related to your hemangioma than it's a good thing your surgery is fast approaching. I'm hopeful you'll get some relief post op.
Hang in there,
Jan
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I did all those things (water, almost no caff, regular meals, iron supplements, I don't smoke or drink, or lift anything heavier than a pug :D generally.)
Dr. Hain did tell me that basically anything that had dizziness as a possible side effect (as blood donation does) would be a problem for me because I just can't compensate for it right now. So I'm guessing it's a constellation of things: steroids have long since worn off, no more Advil, blood loss, barometric pressure changes the last week or so that make my middle ear go whack ... and perhaps the stress of impending brain surgery? :D
Mostly I do think it's physical, that lively little bugger in my head. I suppose that's why hemangiomas cause more symptoms at smaller sizes -- they are actively gurgling and burbling all the time, especially with any change in conditions, torturing my little nerves. I almost cried yesterday thinking it was two more weeks till surgery, then realized it was only really one week, 10 days, now 9 -- if you had told me last summer I'd be counting down the days in anticipation, I would never have believed you.... In addition to all the problems it causes, the thing itself feels like an itch I can't scratch -- driving me crazy!
Thanks for keeping up with me, Jan! I will be fine, am just a little nervous about getting everything done/organized if I feel this way all week. But then again, the big things are already done, and if I can't "fall down on the job" at work or at home the week before brain surgery, when can I? ??? ;D
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The time period between booking your surgery and actually having the procedure can definitely be nerve wracking.
I'm confident that things will turn out great for you and that you'll get through this with flying colors! ;D
Will you have a scribe, someone to update us on your surgery and recovery, until the time you are able to return to the Forum?
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Must.get.this.thing.out.of.my.head.
I like that. Hang in there. 9 days counting down.........I'm sure that's the only thing on your mind right now.......
You're in survival mode I can tell....... and you will feel soooo much better when it's gone. I kind of remember thinking those words at the end of my pregnancies.
Must.get.this.thing.out.of.my.belly. :D :D
One day at a time for the next 9 days ( or one minute/hour at a time). You're in the single digits now!
Maureen
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Jan, I'd be happy to make you "scribe" if you can PM me an e-mail address! I have a friend who will send bulletins, and I can put you on that list.
Moe, thanks! I must say as opposed as I was theoretically to surgery, now I kind of see why it was invented -- sometimes a bad, bothersome thing just needs to be cut out! Having a 1 oz. (??) tumor driving me this crazy, I can only imagine how I'd react to an 8 lb. human being in my body!
Though at least her or she wouldn't be on my vestibular nerve! ;D ;D ;D
I do feel slightly better today, thank heavens -- at least functional again!
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Lilan -
that would be great.
If you access my user profile, you'll find my email address there.
Thanks,
Jan
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Hi Lilan,
Been gone from here the last week or so, but was thinking about you this morning. When are you leaving for CA? I'm sure you're nervous. Hang in there, kiddo :) ... we're all sending good vibes.
Jeepers
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Thanks! I fly out on Monday, with just enough time to get settled and visit with a couple members of the L.A. welcoming crew before pre-op day Wed and surgery Thu! Prayers and good thoughts all welcomed! :)
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Best wishes, Lilan. We will be monitoring you every day. :)
Jan, per recent discussions with mods, we ask that you start a new topic in Post Treatment for the actual updates on Lilan. We are going to try and get all treatment updates in one place.
Steve
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Lilan ~
Have a good flight! I'm sure the unofficial 'Los Angeles AN Welcoming Committee' will give you a warm reception and of course, you'll be the thoughts and prayers of many - especially next Thursday. :)
Jim
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Thanks, Steve and Jim! You are all such a blessing! :) and the prayers are gratefully appreciated already!
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7 days and counting down.
Will keep you in prayer as the days progress to next Thursday/
Best wishes in your travels to LA, Lilan.
Maureen
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Jan, per recent discussions with mods, we ask that you start a new topic in Post Treatment for the actual updates on Lilan. We are going to try and get all treatment updates in one place.
Will do, Steve.
Lilan - did you add my email address to your list yet?
Jan
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Jan, you're on the list. When there's a new thread, can you include a link back to this one for any future surfers? I know when I came to the forum I really wanted to be able to follow someone's story through, and that might make it easier.
Now, a question: Does the surgery day count as part of the F3D? Or is the following day Day 1? :D
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Jan, you're on the list. When there's a new thread, can you include a link back to this one for any future surfers?
Great idea. I'll try my best to remember this :)
IMO, Day 1 is the day of surgery - but Steve's the one who started this idea, so I'll defer to him.
Jan
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I think the first day of surgery counts, because normally, the surgery is started in the morning, and you are awake by the evening or late evening.
That first night sucks :'(
Then you have two more sucky days, so that makes 3.
Over before you know it! ???
Maureen
any sort of meds are in order to help you sleep through what you can, between being prodded/questioned/moving your face and mouth, etc ;)
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I think the first day of surgery counts
That's what I was hoping to hear! ;D
That means by Sunday perhaps things will be looking up.
Left work at 1 p.m. today -- it's so strange saying goodbye for something like this! Had a nice, long al fresco lunch with friends, then bought a Mojitea at Argo Tea to bring home (mojito version of iced tea ;) ) I aimed to be done with all my actual work by end of yesterday so today would be smooth, and it was a good idea -- saying goodbye and doing a few last-minute housekeeping tasks at work took a good while.
I set my work e-mail up to move all incoming mail to the trash and delete it all every seven days (people will get a bounceback, so they know to contact someone else or resend in August) -- so NO e-mail pileup to come back to! So happy about that. :D
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I think the first day of surgery counts
So what you are saying is that the day of surgery counts as one of the first three days that don't count.
Only in the devilishly convoluted world of AN could that make sense. ;D
Steve
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I think the first day of surgery counts
That's what I was hoping to hear! ;D
That means by Sunday perhaps things will be looking up.
Yes:-) No matter what Sunday will look better than Saturday and Monday will look better than Sunday.....
addendum: I should have said Friday will look better than Thursday and Saturday will look better than Friday.
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I think the first day of surgery counts
That's what I was hoping to hear! ;D
That means by Sunday perhaps things will be looking up.
Left work at 1 p.m. today -- it's so strange saying goodbye for something like this! Had a nice, long al fresco lunch with friends, then bought a Mojitea at Argo Tea to bring home (mojito version of iced tea ;) ) I aimed to be done with all my actual work by end of yesterday so today would be smooth, and it was a good idea -- saying goodbye and doing a few last-minute housekeeping tasks at work took a good while.
I set my work e-mail up to move all incoming mail to the trash and delete it all every seven days (people will get a bounceback, so they know to contact someone else or resend in August) -- so NO e-mail pileup to come back to! So happy about that. :D
Oh, Lilan!! I'm getting excited for you! Have you been restless these last few days? I imagine going into some sort of "power cleaning" mode to keep my mind distracted ... I guess that's ONE way to finally get my home office in order! ;D
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I definitely have a sense of anticipation! And the weekend will fly, and next thing I know I'll be heading for the airport Monday morning! I feel strangely calm and I hope that continues. I really think I got the terror and tears out of my system last summer, and now knowing that in 15 days I'll be back home with my tormenter left behind in hazardous waste box ;D -- it's just very freeing.
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So what you are saying is that the day of surgery counts as one of the first three days that don't count.
;D ;D ;D
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I am off in the morning to L.A. so will probably have only spotty Internet access after early tomorrow morning.
Thanks so much to everyone who has told their stories and followed mine! The forum is priceless. I feel so, so calm and it's because of all of you and the collected diary and cheerleading section we have here.
I'm optimistic yet terrified but will name and claim a great outcome now: Look for excellent news coming on Thursday night! Thank you to everyone who has kept me in their thoughts and prayers and please hold me there awhile longer!
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Hi Lilan,
I'll definitely keep you in my thoughts and prayers. Take care - hopefully you can check in before your surgery on Thursday!
Keri
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Safe travels and surgery too.
Will keep you in prayer all week.
Maureen
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Lilian,
The very best wishes, I know you will come through with flying colors, minimum side effects and a happy smile. ( At least after those notorious first three days)
Blessings,
Darlene
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Hi Lilan,
I'll be thinking & praying for you, my he-man buddy.
My docs told me this was a better scenario than having an AN.
Hoping it all goes well & speedy recovery. Looking forward to your posts post ;D
Hugs,
Carolyn
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Well, I'm here on the Seton computer! It's very comfortable here -- must be, as I slept around 10 hours -- Nancy and David are wild partyers and they kept me out till all hours! ;D
Seriously, it was like meeting celebs being with them, and seeing the fruit guy outside Seton who I'd heard about from Alicia! They are awesome. It was so nice to arrive to some friendly faces! Today is one more "play day" for me before my pre-op day. So far the worst thing has been trying to comb my hair out after the shampoo-only shower ;D (conditioner and product banned for three days before surgery).
He-man! I love it! Thanks so much everyone for your good wishes -- I swear I can feel them! A nun stopped me in the hallway here yesterday and said, "So how is the patient you're here to see?" I said, "Well, I am the patient, but my surgery isn't till Thursday!" She said she would be praying for me -- so nice!
For future Seton visitors: Bringing the Starbucks Via (instant) was a great idea. Wish I had brought a stainless mug for coffee and water -- and pens! There are few pens around here (not a big deal to buy). Am also glad I brought extra flip-flops to use as shower shoes -- sanitary and good grip!
Hope to check in one more time before the big day! Have a good week everyone!
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HEY! Now wait just a doggone minute, here >:( NO ONE mentioned ANYthing about not being able to use conditioner or product in your hair!! ??? And for 3 DAYS pre-op ??? ???
What kind of NONSENSE is THIS?
Is there anything else youse guys are not telling me? ;D
Glad all is going well, Lilan ;)
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Hey, Lilan! Glad to know you arrived safely and have already been w/ David and Nancy - aren't they great!!! You just keep them in your mind on days one, two, three, etc - you saw they made it through and you can too!
I had completely forgotten about the hair washing thing and that "special" soap/shampoo they give you for the night before...not good for long hair styles like mine...Don't worry, your hair will be plenty conditioned from not washing it soon enough...That first hair wash you'll get is divine!
I also got to speak w/ one of the St. Vincent nuns pre-op. In fact, I was getting ready to be rolled to the pre-op spot for my new haircut and IV, when she stopped by - was a great comort to me...
Enjoy your day tomorrow...
Cindy
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It all brings back memories.
All the Best Lilan,
Kate
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Jeepers -
I think the "no conditioner, no product" rule must be exclusive to House (?) I had no such restrictions pre-op.
Lilan -
good to hear from you. Glad Nancy and David are treating you well - they seem to have a knack for doing that ;)
We'll be thinking about you on Thursday. Good luck!
Jan
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Jeepers -
I think the "no conditioner, no product" rule must be exclusive to House (?) I had no such restrictions pre-op.
THANK goodness!! ;D
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Hi Lilian,
Glad to hear from you and that you feel fine. I'll be thinking about you tomorrow and I'm sure you'll be just fine :)
All the best to you from Helene in Sweden :)
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Tomorrow's the day.
I'll be praying for a successful, uneventful surgery, Lilan.
Maureen
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I had the pleasure of meeting Lilan this week and showing her a few local sights on her two-day, pre-surgery mini-vacation.
Monday, we took in some of the sights downtown has to offer, followed by dinner with LADavid at The Grove.
(http://farm4.static.flickr.com/3627/3612601933_1175f7fe63_m.jpg) (http://farm4.static.flickr.com/3390/3612602783_8aab81b2cc_m.jpg)
Lilan & David at The Grove, 6-8-09 Lilan & Nancy, 6-8-09
Then on Tuesday, the girls were on their own for the "mountains to the sea" leg of the tour (i.e., Hollywood Hills to Santa Monica).
(The little white dash on the hillside in the background below is better seen enlarged on the right. :))
(http://farm4.static.flickr.com/3555/3613421550_43db5d498e_m.jpg) (http://farm3.static.flickr.com/2474/3615539799_21138f815f_m.jpg)
Lilan & Nancy in Griffith Park, 6-9-09 The Hollywood sign through the haze. (Not smog. ;))
I'm sure Lilan will have much more to share when this whole journey is behind her. But for now, I'll join you all in sending her lots of good vibes for her big day!
Lilan - I know you'll feel all the good thoughts and prayers headed your way on Thursday morning. :)
Wishing you all the best - and looking forward to hearing from you as a postie soon!
Nancy
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Hi Lilan!
Well, today's your big day. It's 5:30am here in Chicago and it's going to rain AGAIN ... I know how hard it is to be away during our lovely June summer weather - 57 degrees, overcast, and damp - HAH! The good news is you'll be back and able to recoup here just in time for the "90's at 10pm" temps ;)
We're all thinking aboutcha, wishing you the best, and looking forward to your first updates!
Jeepers
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Jeepers -
it's now 6:51 in Chicago and it's still raining ::) - I'm wondering if it's ever going to stop. Seems more like April than June :(
Nancy -
beautiful pictures of you, David, and Lilan - thanks for posting them. I'm envious of the mountains to the sea tour - especially the visit to Santa Monica - I just love the Santa Monica pier 8)
Lilan - best of luck; you're in very good hands. Hope all goes well. I'm looking forward to getting some info. in my email box so I can post some updates on the forum.
Jan
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Lilan~
Thoughts & prayers coming your way!
K
PS - It is sunny here today - FINALLY!
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Silly question,
Is Lilan the brunette?
Nancy is the blond, right?
Or is it the other way around? ??? ???
Maureen
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Silly question,
Is Lilan the brunette?
Nancy is the blond, right?
Or is it the other way around?
Other way round. :)
Steve
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Lilan is the blonde! ;D Nancy has the lovely curls!
I can't see the pix on the Seton computer for some reason. But here I am heading over to the hosp in 20 mins or so!!
Yesterday was pretty wild. My left balance nerve registered a big 0% in testing, and 4% word discr in hearing. The tumor is also kind of all over the place. 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). (Apologies to the medical community and Dr. B if I'm not relaying this correctly!) :D But that's the gist of it.
This totally freaked me out at first, but they'll only do it if safer that way and necessary, and I really want the vestib problem solved.
I met a nice woman here from Phoenix who is leaving today a week after retro w/Brackmann. She looks great, though her hearing is gone. Her face is great and she's up and walking around and eating what smells like cinnamon rolls! She's very pleased w/her outcome.
Well, we're off to head over there! Thanks for the prayers & good thoughts! If they have to do the second part it may add some time before updates arrive, but they'll be coming!
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Silly question,
Is Lilan the brunette?
Nancy is the blond, right?
Or is it the other way around? ??? ???
Maureen
Oops - I usually include the names at the bottom of the pics - guess I was posting just a little too late last night! Sorry to make you have to guess! (Though I did always want to be a blonde. ;) ) I'll go back and add them in for future reference.
Lilan - Glad you had a chance to check in again - now we'll all be patiently waiting for the updates from Jan. :)
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I sat down and glanced at Lilan's post really quickly and thought... "Wow, she's already posting; that's a quicker recovery than Ernie!" I had forgotten to allow for the time change and all that.
I'm hoping and praying that Lilan's all done now and is resting.
Looking forward to updates.
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I posted an update just a little while ago http://anausa.org/forum/index.php?topic=9834.0
Sorry if I messed that up. I thought the plan was to start a new thread with a link to this one.
Jan
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That is the plan, Jan. We are going to try and keep post surgery updates in Post Treatment, instead of in a board like this one, which is supposed to be about surgery options pre-treatment. I don't how well it will work, but we'll see.
Steve
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Well, I followed the plan then - sort of ::)
I posted the thread in AN Community, because I didn't know where else to post it.
Post Treatment sounds very logical though ;) - not sure why I didn't choose that option :D
If you need to move it, that works for me.
Jan
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I wouldn't say I need to move it, but I have moved it. :)
Steve
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Hi Jan,
Yes, I was expecting you to post and was going to go look for it on a new thread when I saw that Lilan's hot date post had new stuff, so I read it then saw HER post but didn't realize it was from early in the day and that's what had me confused. I will go look at your post for her now! Thanks
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So I see Steve is a global moderator? Yea, Steve, way to go :)
When did that start?
Moe
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So I see Steve is a global moderator? Yea, Steve, way to go :)
When did that start?
Moe
Me and JoeF as of over 2-1/2 yrs ago... steve and Jim Scott... wasn't soon enough for me and Joe! :) I'm lucky the 3 doods are here to help! Phyl
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Thanks, Phyl
I guess I just never noticed ::)
Moe
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I guess I just never noticed ::)
Yeah, we try to keep a relatively low profile. ;)
Jim
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Hey Cheri! You can read all the latest with Lilan over in the Post Treatment section now, but since you asked about Lainie, I wanted to give you the link to her latest good news - and the reason she's been a little busy lately! ;D
http://anausa.org/forum/index.php?topic=9815.0 (http://anausa.org/forum/index.php?topic=9815.0)
Hope all is well with you! (And love your new sig pic. :))
Nancy