Author Topic: on the road to recovery  (Read 23448 times)

wendysig

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Re: on the road to recovery
« Reply #75 on: August 09, 2008, 10:11:45 am »
Marci,

I never through of a lifetime of MRIs being a prize but that certainly puts a positive spin on it.  I have replied to your thread on depression there.  I hope it helps at least a little

Sending you a big hug,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

lori67

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Re: on the road to recovery
« Reply #76 on: August 09, 2008, 10:49:50 am »
A lifetime supply of eye drops!  Now that would be a prize!!!   ;)

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jim Scott

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Re: on the road to recovery
« Reply #77 on: August 09, 2008, 01:11:53 pm »
Marci:

My perception is that you seem to be doing fairly well with your recovery but are holding back a bit due to some vague feeling that you aren't 'whole' as yet.  That is not uncommon.  You had major brain surgery.  That is serious as well as invasive and requires some adjustment in our way of thinking, afterward.  Usually, even without any post-op complications, our self-image is skewed.  For some, they view themselves as near-invalids, 'damaged goods', as it were, and act that way even when their recovery is actually quite good.  For others, they dwell on their every deficiency, real or imagined, small or large, and sometimes become sad and depressed, even when they're physically doing pretty well.  Some just can't get past the fact that they aren't completely the same as before their surgery and feel deprived and depressed, when they don't need to be.  These are all parts of the same basic template I've noticed from the thousands of posts I've read here over the past 15 months.  I've written a few, too.

Granted, I had a good recovery.  However, I embraced it and ran with it so I can't relate in a totally empathetic way but I do recognize the manifestations of the various post-op despondencies some AN patients endure, sometimes unnecessarily.  Of course there are a variety of factors that can negatively affect the psyche of someone recovering from AN surgery, including other, non-AN-related physical problems, too much pressure or not enough help and sympathy from a spouse and children or even a distorted self-image that sees a different person in the mirror and doesn't like what they see.   Remember, I'm characterizing post-op AN patients with few or no real complications, such as facial paralysis and all the other problems that condition can bring.  Those folks have their own set of self-esteem issues but often recover at a better pace and with fewer psychological issues that those who really have very minor or temporary post-op problems.  Go figure.

I'm certainly not a psychiatrist or any kind of councilor, just another AN post-op patient, but I rather doubt you're in a mental depression, Marci.  A bit discouraged and wary of testing your physical abilities that relate to your AN and the surgery, no doubt, but no more than that.  However, I'll await the comments of the therapist you're seeing on Tuesday, who actually has some credibility with analyzing these things.  Meanwhile, I wish you all good things and a contunued solid recovery.  :)

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: on the road to recovery
« Reply #78 on: August 09, 2008, 01:47:54 pm »
Thanks Jim--what a terrific response.  Are you SURE you're not a doctor/therapist/oracle?  :D
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: on the road to recovery
« Reply #79 on: August 09, 2008, 11:41:17 pm »
Thanks Jim--what a terrific response.  Are you SURE you're not a doctor/therapist/oracle?  :D

I merely note that while Jim scrupulously points out that he is neither a doctor nor a therapist, he has never once denied being an oracle. I think his true identity, and his mythological Greek heritage, have finally been ferreted out.  :D

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.

MAlegant

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Re: on the road to recovery
« Reply #80 on: August 10, 2008, 08:40:53 am »
Steve,
You always make me laugh  ;D and that's almost as good as being an oracle.
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.

Debbi

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Re: on the road to recovery
« Reply #81 on: August 10, 2008, 08:45:58 am »
Hey, Marci - just wanted to check in and wish you a good visit with your therapist on Tuesday.  I think you'll find that the emotions you are experiencing are pretty "normal", but it is still good to talk to a professional.  And, of course, as you already know - you've got lots of friends here who know exactly how you're feeling! 

Hugs to you,
Debbi
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

lori67

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Re: on the road to recovery
« Reply #82 on: August 10, 2008, 09:37:43 am »
. I think his true identity, and his mythological Greek heritage, have finally been ferreted out.  :D


That would explain why most of his vocabulary is Greek to me!   :D

Ha ha - just poking fun, Jim!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jim Scott

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Re: on the road to recovery
« Reply #83 on: August 10, 2008, 04:30:48 pm »

I merely note that while Jim scrupulously points out that he is neither a doctor nor a therapist, he has never once denied being an oracle. I think his true identity, and his mythological Greek heritage, have finally been ferreted out.  :D

Steve

Well, in my youth, my more literary-minded friends (with some knowledge of Greek mythology) used to call me 'Apollo' but I think they meant it in a derogatory way.  ;)  Besides, I never lived in Delphi. 
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: on the road to recovery
« Reply #84 on: August 10, 2008, 06:04:08 pm »
Jim, you are busted.  Oh great and might one...
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.

MAlegant

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Re: on the road to recovery
« Reply #85 on: August 11, 2008, 06:25:04 pm »
Also posted on a separate thread, but thought maybe it should be here.  Am I excited or what?

I know this might not seem like too much, but since most of the right side of my face is numb (except for my upper lip) it seems like a lot to me.  A smaller-than-a-dime spot on my lower lip has feeling!  Yay!  Now I almost have 4 working lip quadrants!!!    ;D
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.

lori67

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Re: on the road to recovery
« Reply #86 on: August 11, 2008, 06:35:43 pm »
Marci -

You have every right to be excited!  What good news!    Let's hope that not-quite-10-cent-spot turns into a quarter very soon!

Lori - still only 2 working quadrants, but that doesn't stop me from talking!   :D
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

MAlegant

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Re: on the road to recovery
« Reply #87 on: August 15, 2008, 06:27:26 am »
Hi friends,
Today I have a meeting at work.  It's my first appearance back in the office and I'm a little worried that I won't be able to form compound sentences. I've mostly been watching the Olympics and surfing the web. Mentally I think I'm ok, except for some short term memory issues, but I'm going.  Will let you know if the "new" me is just as impatient in meetings as the old me was.  I plan on taking my notebook and leaning on my notes as much as necessary. Anxiety level on a scale of 1 to 10; this one is an 8.
M
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.

MAlegant

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Re: on the road to recovery
« Reply #88 on: August 15, 2008, 08:54:16 am »
An addendum to the last post:  this morning I ran for the first time! I walked more than I ran, but at least I've gotten started.  I am doing the happy run/dance! ;D ;D ;D ;D

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.

Jim Scott

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Re: on the road to recovery
« Reply #89 on: August 15, 2008, 09:23:30 am »
Marci:

As one of many who has followed your AN journey through your messages on these forums I certainly will be thinking of and praying for you, today, as you make an appearance at work.  Your run/walk sounds promising and demonstrates, again, that you're well on the way to a full recovery.  Just stay strong and positive.  Decide to return to normalcy and ignore or go around any obstacles in your way.  You can do this Marci and I look forward to reading more on your continued progress.  Have a great day!  :)

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.