Author Topic: New Blog  (Read 4683 times)

Kaybo

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Re: New Blog
« Reply #15 on: February 02, 2009, 12:18:03 pm »
Brian~
I'm going to get to this blog - I REALLY want to read it - but I need more than a sec here & there to sit down & give it some time.  I didn't want you to think I didn't care!!

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!

Pooter

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Re: New Blog
« Reply #16 on: February 02, 2009, 12:22:28 pm »
*sniff*cry*sniff*  It's okay.  Really.. *sniff*cry*sniff*   ;)

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Pooter

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Re: New Blog
« Reply #17 on: February 03, 2009, 10:52:59 am »
Thanks, Cheri!  I'm glad you liked it.  Looking back on it now, there are things that I could change, but I think I'll leave it as is for now.  It's an imperfect story about an imperfect person going through an imperfect ordeal.  What can be better than that?  ;)

Thanks again!

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

saralynn143

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Re: New Blog
« Reply #18 on: February 03, 2009, 08:52:28 pm »
Over at the hemifacial spasm headquarters, members are encouraged to keep an MVD diary to help other HFS patients in their decision-making. Mine turned out very long and detailed because I wanted people to be informed about the complications I had. Complications are less common for HFS surgery than for ANA surgery, but they still happen. I also wanted people to get a feel for what they can do in Detroit, where I chose to have my surgery. I also put in a good word for this site, which is a great source of information for single sided deafness and facial paralyis, the two most common side effects for MVD surgeries.

I think the more information that is out there, the better. Good job, pooter!

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Pooter

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Re: New Blog
« Reply #19 on: February 04, 2009, 11:11:20 am »
Thanks for the kind words Cheri and Sara.. So long as it's helpful for someone embarking on this wonderful journey (AHEM), then it's served it's purpose..  I am still contemplating adding to the blog, but not sure what to write.. I could tell everyone the intimate details of me scratching my nose, but that's not real fun.. Heh.  I'll figure something out.

Cheri, if it's any consolation, then many people go through those same emotions and are merely looking for help in the fog of those emotions and validation that those emotions are "normal".  Writing a story about your journey leaving in all of the emotional inpact could do just that for someone.  Again, just a thought.  ;)

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

saralynn143

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Re: New Blog
« Reply #20 on: February 04, 2009, 09:53:21 pm »
There was a question posed on the HFS e-mail list from a person wanting information about acoustic neuromas, and in specific about finding a doctor, because her nephew had just been diagnosed. I was able to point her to this site.

If that is the only good that comes from my hanging around this site -- and believe me, it's not -- then it's reason enough.

Besides, I'm now an expert on TWO rare neurological disorders.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Debbi

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Re: New Blog
« Reply #21 on: February 09, 2009, 09:08:24 am »
Brillian, Brian!  And, yes, I agree with the suggestion of more pictures.  And, yes, please update from time to time.  I still update mine about weekly - I guess I look at it as sort of a journal or diary.  It's a nice place to talk through things, laugh, whine, whatever.  I've bookmarked yours and also added it to my blog as a link.  Hey, you're my surgery buddy after all!

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