Author Topic: Catlover´s Postie Story  (Read 33467 times)

largecat

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Re: Catlover´s Postie Story
« Reply #75 on: May 27, 2009, 11:48:05 am »
Hi there... just me again...

Helene is very interested to hear me telling her what you have written and talked about - but she has still not the energy to actually sit down by the computer. Maybe tomorrow. Things are getting better, she is eating better, sleeping better and bossing me around the house to work with with the mop and the vaccuum cleaner. Cooking is also on my list - but that I dont mind, cooking is fun, if there is time to do it right. My favourite meal is lingonberries with vodka...  Nah, not really.

We take some short walks around our little field and along the river - maybe 300 meters. It's no problem for her. But she says her head feels funny, like it is not the same she had on when she arrived to the hospital. Double vision is almost gone - only noticable when she looks extremly right or left. No patch anymore. Hearing is still uncertain, she claims she can hear things if she puts them close to the ear, like the alarmclock ticking. We'll see. There are other tinnitus-like sounds in her ear, mostly music, big bumble bees passing by and the occasional electric chainsaw. Not very pleasant, but not a huge problem, for the moment.

I have tried to convince her how good training it would be to do some vacuuming or how stimulating it is for all senses to cook dinner. For some reason, she does not agree...

I think she is influenced by the cat - she does the same as he does...  sleeping in the sofa, taking a short walk in the garden, sitting still watching the birds, grab a snack in the kitchen and back to sleep.



/mats  - "catlovers" husband

Jim Scott

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Re: Catlover´s Postie Story
« Reply #76 on: May 27, 2009, 12:40:23 pm »
Mats:

Helene definitely looks like she is recuperating just fine.  I commend you for your obvious concern and attention to your wife as she underwent this serious operation.  I'm sure your support and that of the family were a major factor in Helene's positive attitude and rapid recovery, which I pray continues at the same pace.

The little film was fun - and well done!  Kudos to all involved.  I hope some day soon we'll be able to watch a similar video with Helene riding/driving the trusty Lada Niva!  :)

Thanks again for the great (current) photos.  Much appreciated as we all get to see what a good AN surgical outcome looks like, personified by Helene.  Well done!

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.

MAlegant

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Re: Catlover´s Postie Story
« Reply #77 on: May 27, 2009, 03:11:35 pm »
The "head is not the same one I came in with" will last for a while, but it will get better every day.  For me it is almost gone but if I'm very tired I can still feel the strange sensations.  I also had lots of noise in my ear which receded over time.  I still have my hearing but I know that is rare.
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.

Kaybo

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Re: Catlover´s Postie Story
« Reply #78 on: May 27, 2009, 03:19:15 pm »
Hugs to Helene!!  Sounds like you are really doing great! 

K
PS - i love your blue trim - my front door is that exact color!!
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!

cecile k

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Re: Catlover´s Postie Story
« Reply #79 on: May 27, 2009, 03:38:02 pm »
Wow, Mat and Helene - I've been following your posts but not responding until now. Helene, your recovery is nothing short of amazing!!! It took me two weeks in hospital just to relearn balance, then five weeks at my parent's place in a quiet environment before heading home to hubby and sons, then ages 14, 12, 10, 7 and 4. Your head is going to feel 'off' for a while. Just keep taking short walks and mimicking the cat....sleeping, eating, sleeping :-) Bossing your hubby around is fine too - seems like he is enjoying it all anyway :-)!!!

Cecile

NancyMc

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Re: Catlover´s Postie Story
« Reply #80 on: May 27, 2009, 04:27:07 pm »
Mats,
I'm busting my gut!  Good thing my fat harvest incision has healed up.
Best to Helene,
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

Lilan

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Re: Catlover´s Postie Story
« Reply #81 on: May 27, 2009, 07:04:01 pm »
Mats, you've been great -- both to Helene and to us, the information vultures!  :D  Thanks for keeping us fed!  :D

I understand about the "letdown." Not in the negative sense, as the outcome is so positive -- but somehow "brain surgery" seems like this epic thing, like you're going to slam into a brick wall or wind up at the bottom of the ocean -- and then it's like, "oh, so you lie down on the table and a few days later you go home on your own two feet!" It somehow seems anticlimactic after a lifetime of "brain surgery" being the synonym for the most epic, drastic thing you can ever imagine!

And thank heavens that's the case. I notice from the questions people ask me that they expect -- I don't know, that a patient may be bedridden for months or something -- I keep saying, "No, you're up and walking within a couple days...." and people are so surprised. Of course, there's a longer road ahead for the more subtle aspects of recovery, but it has taken about five decades to refine the surgery to the point of being anti-climactic, and I sure appreciate it.  :)

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: Catlover´s Postie Story
« Reply #82 on: May 27, 2009, 09:37:49 pm »
very good point, Lilan.

Great to see your cat (I figured he'd / she'd show up in a picture one of these days)!

Helene, you look great!

Thanks, Mats for all your funny updates.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

leapyrtwins

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Re: Catlover´s Postie Story
« Reply #83 on: May 27, 2009, 10:14:25 pm »
I'm thinking it's about time for Helene to read this thread and see that vacuuming and cooking dinner are BIG no-no's.  Won't help with recovery at all, Helene.  Best to keep following the cat's example  ;)

Nice try, Mats  :D

The head thing Helene is currently experiencing is what we like to call "wonky head".  It will pass for the most part, but may return on occasion when she's stressed or over-fatigued.

As I always like to say - AN, the gift that keeps on giving  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: Catlover´s Postie Story
« Reply #84 on: May 28, 2009, 12:42:43 am »
sleeping in the sofa, taking a short walk in the garden, sitting still watching the birds, grab a snack in the kitchen and back to sleep

Sounds like Saturday morning to me. :)

I'm thinking Helene will be posting soon. Thanks for the updates, Mats. I know that you have been through a lot as well. Maybe writing it all up in that Caregiver topic would help.

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.

largecat

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Re: Catlover´s Postie Story
« Reply #85 on: May 28, 2009, 07:22:00 am »
Nothing much to share today, I went home during my lunchbreak and Helene was resting on the sofa on the veranda. But to keep your attention, I share a walk around the house. some pics taken april 2008. "Kaybo" has to take the blame for this, she made a comment about our blue framwork. Actually, that glass wall is home built from welded 60*40 square tube, with a door i found on a second hand market. Is it called "flea market" in English too?

http://s80.photobucket.com/albums/j171/nivahma/div2008/Hus_april/?albumview=slideshow

/mats  - "catlovers" husband

Kaybo

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Re: Catlover´s Postie Story
« Reply #86 on: May 28, 2009, 03:37:15 pm »
What am I getting blamed for now??  ::)

LOVE the pictures - can I come visit??  ;D

K
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!

leapyrtwins

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Re: Catlover´s Postie Story
« Reply #87 on: May 28, 2009, 09:12:38 pm »
Well, if Kaybo's visiting, I want to come too.

And you can't have me without Lori.
 
Thanks for the invitation, Mats.  BTW, does Helene know about this??  ;)

Beautiful pictures.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

largecat

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Re: Catlover´s Postie Story
« Reply #88 on: May 29, 2009, 03:56:44 am »
I wonder how long Helene will let me share the everyday life of our family here...  Inviting strange people to our house and showing private pictures...

Yesterday evening we took a walk in the forest, maybe 2 kilometers. It worked fine, even on small trails. She also did the "window-viewing" training left-right and of course there is a difference from before the operation, but I think she does well. Some small stumbling steps while turning her head, but not much at all.

I have told her not to do that training when she is walking close to the river, I don't want her come home to the house all wet and drag in mud and water after falling into the river. After all - I'm the one responsible for cleaning, just as you have instructed.  ;D

She asked me not to be so positive here, she is not feeling that well, she says. I try to describe the progress in a neutral way, and you say she is doing an amazing recovery. So, I think you are both right - she is not feeling fine - but she is feeling unusually good considering the short time passed since surgery.

Over and out from Sweden

Edit: Spelling...
« Last Edit: May 29, 2009, 07:37:17 am by largecat »
/mats  - "catlovers" husband

suboo73

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Re: Catlover´s Postie Story
« Reply #89 on: May 29, 2009, 05:10:22 am »
Mats, 

It is always good to read your updates! 
I hope Helene won't mind that you continue posting...you said it yourself that we always like more information! 
I have not had surgery like this, but it sounds like Helene is doing GREAT!  ;D
Even now, with no treatments yet, i still think i have to get used to the 'new' me.  I hope Helene can, too.

And i would also worry about her falling in the river!  How deep is the river?!?

Please give my best to Helene! 
Sincerely,
Sue

Hijack --BTW - To K, Jan, Lori, et all - if you are going to Sweden, i want to go too!  So, if we can't actually have the next Convention there, since Italy is being considered, perhaps we should go and help Mats start a support group - or just have a big swedish party!  Game on!
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W