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Author Topic: mathilda update  (Read 7051 times)

Mathilda

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Re: mathilda update
« Reply #15 on: November 02, 2008, 02:21:53 pm »
Yes there are quite a few people from Texas. We met a girl at Seton who lives 3 hours north east from Dallas. She had surgery 2 days before I did. Her name is Gidget. She was doing very well. Her hearing was saved and also her facial nerve. We both felt so tremendously blessed with our outcome !
But I agree, Texas is huge!  Our oldest daughter lives about half an hour from McKinney and when we visited her last June I was just amazed at the distances. Of course you have to realise that we live in a tiny country with everything close by. I can just hop on my bike and ride to the beach in 40 minutes. It takes 30 minutes in the car to drive to Amsterdam, 15 to The Hague, 25 to Rotterdam, 30 to Utrecht, 20 to Delft. That is, if you're not caught in traffic. Our country is about 200 miiles long and 100 miiles wide  ;D. Isn't that strange to you people living in Texas ?  We enjoy it though living so close to everything. Our towns are pretty condensed, so there is still enough countryside in between. Just enough to enjoy riding bikes from one place to another. But to the Texans among you, my country must seem like a miiniature state. There's 16 million people living in it though!

Mathilda
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Diagnosed in 2006. Recent growth from 7 to 11mm.
Middle fossa surgery at House Ear Clinic on October 16th 2008.
With the results I hoped for: hearing saved; no facial problems.
Just wobbly headed; in need of patience ;)

Jim Scott

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Re: mathilda update
« Reply #16 on: November 03, 2008, 02:41:15 pm »
Mathilda:

My embarrassingly belated congratulations on your successful surgery and impressive recovery!  May it continue apace. 

Thanks for sharing it with us.   :)

Jim
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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.

Debbi

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Re: mathilda update
« Reply #17 on: November 04, 2008, 11:46:25 am »
Oh, I LOVE Stroopewaffles!  I discovered them on my first trip to the Netherlands and brought home as many as I could fit in my suitcase.  They are wonderful warmed over a cup of tea or coffee - it gently steams and heats them and makes their center nice and soft.  Oh, heaven ....

There's  Dutch chocolaterie in town and she carries stroopewaffles, so I must go get some very soon!

Debbi, dreaming of stroopewaffles...
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Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

cindyj

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Re: mathilda update
« Reply #18 on: November 05, 2008, 02:56:07 pm »
I will ask her to say it when I see her later today!  We made it in last night and are awaiting our Tour Guide, Nancy L, to arrive!  We are to meet Mathilda at the beach later today - can't believe I'm really finally here - even though I'm from Atlanta, I feel rather like a country bumpkin come to town out here - it's very cool.

Will get back here later tonight to give you guys a report...had a bomb scare one block from the hotel this morning - how exciting!

cindy
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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

NL

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Re: mathilda update
« Reply #19 on: November 06, 2008, 02:12:23 am »
Hi All,

After a quick tour of the city, Cindy, her hubby, her mom and I did meet with Mathilda and her husband Max. I'll post some more pics on a different thread, but since everyone here was following Mathilda's progress, I thought you would all like to see the lovely pic we took of Mathilda and Max today.

She is three weeks post-op, and had more energy than all of us!



Cheri - Cindy also remembered to ask her to say STROOPEWAFFLES! I wish I had a sound bite!

Mathilda - It was such a pleasure to meet you and Max. Have a safe flight home tomorrow and please keep in touch with us!

Nancy
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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

Kaybo

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Re: mathilda update
« Reply #20 on: November 06, 2008, 10:06:24 am »
Mathilda~
You look GREAT!  I wish I looked like that now & my surgery was a LONG time ago!!  LOL!!   ;D
Safe travels,
K
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

sgerrard

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Re: mathilda update
« Reply #21 on: November 07, 2008, 12:46:28 am »
Nice!

Now it is international jet-setters strolling the streets of LA on a pleasant evening, having a casual discussion about waffles and brain surgery. :)

Nancy, I trust you and the LA Welcoming Committee are taking good care of Cindy as well.

Steve
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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.

NL

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Re: mathilda update
« Reply #22 on: November 07, 2008, 01:55:47 am »
Actually, the committee was down one today (we need some more members!), but David was able to take some time out from moving today to join me in giving Cindy the official LA welcome.



Cindy - we will all be sending our good thoughts and vibes to you on Friday morning! Looking forward to hearing updates from your mom as soon as she's able to send them.

Nancy
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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

Mathilda

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Re: mathilda update
« Reply #23 on: November 09, 2008, 11:44:25 am »
Hi everyone

It was truely wonderful to meet Nancy and Cindy with mom and hubbie. Nancy and co. sure do a great job in welcoming and reassuring everyone.
Thanks for a pleasant time!  And of course all the best to Cindy who by now should be starting to come out of the clouds.
We have returned home and it was very very nice to embrace my youngest daughter (17) who was thrilled that we had returned home after a 4 week "getaway".
Although the weather in LA was more comfortable it is better to be home. Especially now that I have an excuse to just sit around and do nothing for a large part of the day  ;D  A little dangerous though because I now also have the time to analyse all the things I would love to see changed in my house. But at the same time great to actually have the possibility to read all the books that have been idly sitting on my bookshelves.
I'm feeling a little better every day though it's still kind of "loud" inside my head. The tinnitus has been more noticeable since the surgery but I'm sure it will get better over time. I just need some patience I guess. It still is only 3 1/2 weeks.

Mathilda
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Diagnosed in 2006. Recent growth from 7 to 11mm.
Middle fossa surgery at House Ear Clinic on October 16th 2008.
With the results I hoped for: hearing saved; no facial problems.
Just wobbly headed; in need of patience ;)

Omaschwannoma

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Re: mathilda update
« Reply #24 on: November 09, 2008, 01:00:38 pm »
Mathilda,

I'm so happy all went well for you and now you are home, where there is no place like it, even if you want to change it a bit!

My daughter introduced me to stroupwaffels while in Germany and OMG!  These are dangerously yummy!  Another favorite I found were "Happy Hippos"!  I share everything in my life (except those) with my hubby!  Now that my daughter resides in the USA, I must resort to friends of hers over there to mail me a box when they can. 

I have to say you are doing exceptionally well if you can focus your eyes, almost 4 weeks post, enough to read.  Enjoy your books and your time healing! 
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1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Mathilda

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Re: mathilda update
« Reply #25 on: November 11, 2008, 06:41:19 am »
I'm sorry Cheri, but I don't have a clue as to where you can buy the real good ones online. All I know is that when we lived in Idaho we tried some and they were also quite cinnamony which we didn't like at all. When we fly again I will buy some more (I bought the ones I gave to you on the airport) and maybe it has an internet address on the box. However I don't think we will be flying anytime soon. Normally I buy them at the supermarket but they don''t have an internet address on the packet.
Sorry !

We arrived home safely after a tiring trip. Jetlag is also bothering us so I don't sleep very well these days. But give me time and I'm sure I will recuperate.
It's great to be home though!

Question: how long did it take for the little tape on your tummy incision to come off. Even after showering every day and taking a couple of baths mine is still holding strong. Just wondering.

The vein in which the IV was in my arm is currently very painful. Swollen and hard. Must be some sort of an inflammation. It started on the day of our flight home. The past two days it seemed to get better but today is worse. I guess I'll have to go see my GP tomorrow or so. I have no clue what it is.
Though on the 5th day at the hospital the lower half of my IV arm was very very swollen but after they took the IV out it got better after a day or two. So I find it strange that now the vein has started to get swollen and bother me again more than two weeks later.

How are you keeping?

Mathilda
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Diagnosed in 2006. Recent growth from 7 to 11mm.
Middle fossa surgery at House Ear Clinic on October 16th 2008.
With the results I hoped for: hearing saved; no facial problems.
Just wobbly headed; in need of patience ;)

ppearl214

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Re: mathilda update
« Reply #26 on: November 11, 2008, 06:45:32 am »
Mathilda,

shame on me for not chiming in sooner :(  My bad... thrilled to hear all has gone well and that you are now back home (hoping the jetlag wears off VERY soon).  Please take it easy and hang in there... and sending continued wellness wishes to you.

Congrats on Postie-hood!  And thrilled to hear you got to meet the "worst" coast gang 

*ducks for cover from flying objects aimed at me from LA*

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

Cheryl R

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Re: mathilda update
« Reply #27 on: November 11, 2008, 08:38:48 am »
Hello.     Put some hot packs on your arm at the IV inflammation site.       I am a retired nurse and saw it happen every so often.       I had it happen to me after one of my AN surgeries and can hurt like heck.           They can take several days to go away and I never seen any that needed antibiotic.       It is doubtful it is a true blood clot.  Can't remember one ever really being one.    Of course talk to your dr if doesn't improve.   
Sounds like you are otherwise doing very well and you look wonderful.      Good luck on your continued recovery.
                                            Cheryl R
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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

JerseyGirl2

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Re: mathilda update
« Reply #28 on: November 11, 2008, 10:09:54 am »
Mathilda,

Sounds as though you're coming along wonderfully -- congratulations! I remember that the tape over my abdominal incision stuck around for quite a while -- but don't worry -- it will eventually come off on its own. I had my annual gynecological exam a couple of months after my surgery and when my doctor asked me what the incision on my abdomen was from, I replied, "my brain surgery!!" I gave him the full story after we both stopped laughing.

Catherine (JerseyGirl2)
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Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Jim Scott

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Re: mathilda update
« Reply #29 on: November 11, 2008, 10:23:09 am »
Mathilda:

Having once lived in Southern California (North Hollywood, 1975-77) I know how pleasant the climate can be but to recuperate from AN surgery, there really is 'no place like home'. 

You seem to be doing splendidly in your recovery and I pray that it will continue unabated - and that you'll overcome the urge to remodel your home as 'therapy'.  :)

Jim
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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.
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