Author Topic: Laura surgery update  (Read 17622 times)

MAlegant

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Re: Laura surgery update
« Reply #90 on: April 26, 2009, 08:33:00 pm »
What a great update!  The spaghetti reminded me of the time recently when my husband unwittingly made a pasta dish for me that I could not eat (numb face) and I ended up eating cereal and crying on the sofa.  Now we know which pasta works well (penne) and what to avoid (everything else).  Laura sounds so good.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

sgerrard

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Re: Laura surgery update
« Reply #91 on: April 26, 2009, 10:37:14 pm »
She had cream of wheat (with a spoon!), french toast, and bacon for breakfast this morning, watched a movie on tv, then took a two hour nap. Sounds like a perfect Sunday morning to me! ... she took a leisurely shower (like a half hour!) ... Once she was done getting all gussied up, she decided to go... back to bed. Primping is tiring work, you know...

Can you explain again why she wants to get out of there?  ;D

I hope her adventure this evening wearing sneakers goes well. Best wishes.

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.

EJTampa

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Re: Laura surgery update
« Reply #92 on: April 27, 2009, 10:33:58 am »
I vote that all future ANers give Barbera their hospital phone number so Barbera can keep us all updated!   :D
 
Again, another great update and Laura seems to be in high spirits now!  I remember when I first came home from the hospital, my showers were about 30 minutes, but only because trying to keep water out of my ear while washing my hair took some extra time :).
 
It's good that Laura is going to try walking without assistance with her boyfriend nearby.  I'm sure the walker gives her a nice sense of security, but I think her balance will improve more quickly if she allows her body to falter here and there along her trip.
 
I'm keeping my fingers crossed that she gets to go home on Wednesday as she hopes.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

NancyMc

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Re: Laura surgery update
« Reply #93 on: April 27, 2009, 12:10:30 pm »
Quote
trying to keep water out of my ear while washing my hair

We're supposed to keep water out of our ears?!?!
HIJACK
I ordered my operative report from the infamous Mili, as I mentioned last week, and it arrived on Friday, a week later.  Along with it were my discharge instructions.  About time I saw those, don't you think, sixteen days post-op?
So many bass boats out there Saturday, Ernie.  Missed you!
Nancy
« Last Edit: April 27, 2009, 01:48:35 pm by NancyMc »
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Jim Scott

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Re: Laura surgery update
« Reply #94 on: April 27, 2009, 01:01:36 pm »
Barbara ~

Another affirmative 'Laura report'!  I agree with Ernie that Laura should attempt walking sans walker to facilitate regaining her sense of balance and hasten her discharge.   Your account of Laura's spaghetti-eating experiment was hilarious, as you described it.  I believe the 30 minute use-up-all-the-hot-water post-op shower is some sort of healing ritual and proven to be therapeutic.  Well, it was for me.

I love to write, too - but don't find much time to do it.  However, you seem to actually have some talent for it.  I'm just loquacious.  :)  Thanks again for the updates!   

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.

BarbaraS

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Re: Laura surgery update
« Reply #95 on: April 27, 2009, 10:40:26 pm »
Hi everyone -

Here are today's (4/27) updates on Laura's progress:

 - She had a very busy and productive day - no time for napping today!
 - She has had no further headaches or pain meds for a few days now. Hooray!
 - She did not need an anticoagulant shot today.
 - The double vision was GONE when she woke up this morning! (No more groovy glasses!) Her left eye is a little blurry, so reading is still a bit difficult, but she is thrilled about not having double vision anymore. Such fabulous news!
 - She continues to have the "almost tingling" sensation on and off in her face, and she discovered today that she could feel her cheek near her jawbone. She's not sure whether that area had been numb or not, since she has been so focused on the front part of her face (left side of her nose and lips), where she is experiencing most of the numbness.
 - In the midst of all of her progress today, she did have a temporary letdown. She admitted she was sad about her face not looking right to her - it's not the same as it used to be and she was wondering when and if she will look like herself again. Completely understandable.
 - She told her doc that she wanted to go home on Wednesday. The doc was fine with that and arranged for her to talk to a case manager about discharge plans. (And her doc was not pleased to learn that Laura had no PT on Saturday, as she was supposed to.) The case manager and the therapists were not happy about her wanting to go home on Wednesday, but she is determined to prove to them that she is ready - and from the day she had today - it sounds like she is!
 - She had very productive PT, OT and speech therapy sessions; however, she was scolded by the OT first thing this morning, when she was caught leaving the bathroom with her walker instead of the wheelchair (Oh no! :o).  Apparently, she is supposed to use the wheelchair to get back and forth. The problem with this theory is that the nurses keep the wheelchair parked in the shower, so even if Laura wanted to use the wheelchair (which she doesn't), she would have to walk to the bathroom to get it. Hmm...
 - She had a lot of exercises today and did really well with all of them. She walked without the walker (they had her wear a belt so they could check her balance, if necessary, because she leans to the left a little); walked over and weaved through sets of cones; practiced learning how to get in and out of the shower properly for when she goes home; hit a balloon back and forth (fun!); and kicked and trapped a ball with her feet (she conveniently forgot to tell them she was a former varsity soccer player, figuring they would be more impressed with her coordination if they didn't know that ;)). She did all of this unassisted and with very few balance checks. They were very pleased with her progress.
 - She got to do some outside PT today, which included going up and down five flights of outdoor stairs (about 75 steps each way). She said she felt great doing this - a little fatigued, but not bad, and no dizziness or nausea at all (she took anti-nausea meds before PT again this morning). She held the railing only lightly, and was pleased with her balance and pace going both up and down. Very impressive! Tomorrow she will practice getting in and out of a car.
 - For speech therapy, she performed really well on most exercises (looking at a picture and writing a few sentences about it, drawing the hands on a clock, etc.), but the one task in which she underperformed was listing as many animals as she could think of in one minute, and also listing as many "s" words as she could think of. On both of these, she started out okay, but then ran out of things pretty quickly (not because her brain wasn't working right, but because she is terrible with stuff like this - even before her surgery). She laughed when she told me about trying to convince the therapist that she wasn't cognitively impaired - she was just bad at lists (particularly those that involve the rapid fire naming of farm animals, zoo animals, etc.)
 - Alas, these posts of late would not be complete without a food discussion, so here is today's. For breakfast, Laura had her usual cream of wheat, a fruit plate, and some cottage cheese. While eating, she decided to add some fruit to her cottage cheese (not my particular taste, but I know a lot of people like that). The fruit at her disposal included cantaloupe and honeydew melon, strawberries, and grapes. Which one did she decide to add to the cottage cheese?  That's right, the grapes. The small, oblong, slippery fruit with skin that nothing sticks to (like cottage cheese, for instance). Good choice. Luckily, she was eating it with a soup spoon so she could at least scoop up some cottage cheese with her nonstick fruit. Ah, the adventures of eating.
 
But what was the best part of Laura's day today? The surprise visit from fellow ANer Brenda (Teff)! She was THRILLED that you came to visit, Brenda!

Have a good night!
Barbara
 

sgerrard

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Re: Laura surgery update
« Reply #96 on: April 27, 2009, 11:17:27 pm »
Okay, Laura is fine now. She should go home Tuesday. I think the PT people are being a bit obsessive. It was just brain surgery, after all.  :)   Seriously, if she is going up and down flights of stairs, she can finish her recovery at home.

The verbal testing is inane. When I had some vestibular testing, where they video tape eye movements and such, they would distract me by having me name off foods for each letter of the alphabet. This kind of task is so unrelated to the real world that it is often difficult to complete them. My brain, anyway, can find no context or purpose for doing them. In my case, they didn't care, they just wanted me thinking about something else. I got stuck on H, and the technician later said "hot dog" with a suppressed by still discernible roll of her eyes.

I'm sure she enjoyed the visit from Brenda, but I think the best news is that the double vision has cleared up. That could have been troubling if it had persisted.

Thank you for your updates. If the day is approaching when these will stop, can you find something else to post about?  ;)

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.

NancyMc

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Re: Laura surgery update
« Reply #97 on: April 28, 2009, 03:57:34 am »
Barbara,
Please tell Laura that she is right where I am now.  I never had any of the PT and OT that she is having.  I just walked a little and went up and down a half flight of stairs, asked to go home, and was discharged.  No cognitive testing.  My face is a mess as everyone knows.  Show her my mug shot from the Spa Day thread.  It remains the same, and I am all upset about it, too.  I've learned that six weeks to two years is the projected recovery time for the facial nerve.  I went home with double vision that cleared up two days later.
Send her home!
Thank you for your continued journalism.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Jim Scott

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Re: Laura surgery update
« Reply #98 on: April 28, 2009, 01:24:18 pm »
Hi, Barbara ~

From your account, Laura seems to be progressing splendidly.  I hope she realizes that she can do most of the balance exercises at home, especially if a friend assists.  That young lady needs to be discharged from the hospital - and I hope she'll be home soon.  Great news about the double vision beginning to resolve, as we had all hoped it would.  Eating is always good and Laura seems to doing that quite well.  Brenda's visit must have been very special!  I'm so glad that happened.   

I guess I was fortunate in that I just had to walk up and down some stairs and around the hallways to earn the PT nurses O.K. to be discharged.  No paper cognitive tests.  Maybe they just wanted to get rid of me.  Whatever the reason, I did fine with the VNA PT person at home and after 3 sessions, she declared me no longer in need of her services.  During that initial recovery period, my wife and I practiced throwing a small beach ball back and forth and we took lots of walks, often on uneven surfaces.  You would be surprised how much PT you can do on your own, especially when motivated to regain normalcy, as I was and as I assume Laura is and will continue to be. She's going to be fine and probably quite soon, too.  Good job, Laura - and Barbara, thanks yet again for the timely, informative update.  :)

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.

teffaz

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Re: Laura surgery update
« Reply #99 on: April 28, 2009, 09:31:52 pm »
 ;D
Whew! I finally got over being ill and traversed the 90 miles from my house to Laura's house--oops, I mean to Laura's hospital room! (Does she feel like she's taken up residence there?)

It was wonderful to visit with Laura! We met online in this forum a couple of months ago, and have been phoning and emailing each other because we share the same surgeons, the same type of surgery (tranaslab), the same facility (Barrow Neurological Institute). (My experience there is coming soon.) Hey, we even share the same SSD side!

Laura is doing so well, as Barbara has so eloquently shared with us. We had a nice, long visit (I think I may have worn her out!) about all her post-op adventures. I told her she has earned her place in the Guiness Book of World Records for what she has been through.

When I first came onto her floor in the rehab unit, I saw her working with her physical therapist. She was fairly skipping down the hallway. Well, maybe not exactly skipping, but it looked very adventuresome to me!!

Laura told me Barbara reads all the posts to her every night, and that they mean a great deal to her. She sends a great big thanks to all of you!!

Laura's grit, determination, and positive thinking are truly outstanding. I admire her greatly. It was a privilege to meet her in person and I know she will make amazing progress as she makes that transition to home and family.

Best,
Brenda











1.5 cm. x .5 cm AN
translab May 2009
SSD (before surgery as well as after)
grateful for incredible surgeons: Dr. Porter & Dr. Syms
Barrow Neurological Institute; Phoenix

BarbaraS

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Re: Laura surgery update
« Reply #100 on: April 28, 2009, 10:25:02 pm »
Hi everyone -

Here are today's (4/28) updates on Laura's progress:

 - I was going to hold this until the end of my post, but I just can't wait - Laura is going home tomorrow! Her discharge is tentatively scheduled for 11am. Home sweet home! Hooray!!!
 - She had another great day today with a lot of therapy activity, including walking forward and backward, doing sidesteps, stepping on aerobic steps, going up and down outside stairs (3 full flights in each therapy session) and walking on sidewalks - with very few balance checks and all without needing to take any anti-nausea meds. Awesome!
 - She worked with her therapist on facial exercises and also had to complete some more cognitive exercises. For one of her exercises, she had to sort some playing cards by suit, and then move to the next task. She knew she was only supposed to do a few cards, but once she got going, she wanted to finish the whole deck. As she was sorting the cards, the therapist interrupted and nicely asked if she remembered what the directions for the task were. LOL! Between not properly following directions on the card task today and the "animal naming" incident yesterday, Laura is pretty sure that the therapist thinks she's a bit of a dunce!  ;)
 - Apparently, getting caught coming out of the bathroom with the walker yesterday had dire consequences. For the first time since she's been in the rehab unit, the night nurse came in and put her bed rails up last night - and then moved the walker out of reach, to boot! And they did the same thing tonight. (That'll teach her for trying to be an independent adult and go the bathroom by herself.) As I was talking to her, she told me she was stuck in her bed for the night. She said, "first they tag me, then they trap me!" :D

Ah, but tomorrow, she's free!  I am SO excited for her - and I am very excited that I will be seeing her in just a couple of days. I am flying out on Thursday to visit her for a few days - I can't wait!

I'm not sure how many more posts I'll have, so I just want to thank all of you from the bottom of my heart for your incredible generosity of spirit. Your unwavering support, guidance, and infinite kindness has meant the world to Laura - and to me. This is such a wonderful group and I feel blessed and privileged to have been a part of your lives. I hope it can continue somehow. And I love knowing that you are such a big part of Laura's life!

Have a great night!
Barbara


CFranklin

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Re: Laura surgery update
« Reply #101 on: April 28, 2009, 11:08:03 pm »
Hello Laura, Barbara, and the ANA support folks,

I went out of town for a few days and returned to read numerous notes and posts of major progress about Laura.  She's doing tasks, both physical and mental, that took me a few weeks to master after surgery.
So congratulations, Laura, because it's all of your hard work that is making the difference.  Not only are you making tremendous strides, but you're keeping your sense of humor.

I look forward to hearing that you've landed home sweet home.

Take care,
Carol Franklin 
June 2001 retrosigmoid approach for 2 cm AN at Barrows Neurological in Phoenix.  Tinnitus, loss of hearing, still have all my freckles.

NancyMc

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Re: Laura surgery update
« Reply #102 on: April 29, 2009, 04:52:27 am »
Laura has been through the wringer.  You have been her best asset.  I'm so glad you two will get to have some time together.  But try not to make her laugh too hard!  Don't want to split those stitches!   ;D
I'll get Laura B's address in NY for journal mailing as soon as they are headed home.
This has been a long haul for all of us, and we are as relieved as you that she is finally going home.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Keri

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Re: Laura surgery update
« Reply #103 on: April 29, 2009, 07:54:41 am »
Yeah! So glad Laura is able to go home. Thanks for the great posts, Barbara.
We hope and pray she continues to improve in all ways. Glad you are there, Barbara, for such support.
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

wcrimi

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Re: Laura surgery update
« Reply #104 on: April 29, 2009, 08:36:01 am »
I've been followiing this thread casually (very busy), but please let her know she is in my prayers.  ;)
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move