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Author Topic: This & That from Kaybo...  (Read 5755 times)

Kaybo

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This & That from Kaybo...
« on: October 15, 2008, 08:40:59 pm »


OK, so if I finally followed Jan's instructions correctly, I should have a picture.  So I know that this is not the BEST picture...I could have a bit more symmetrical smile and hopefully (fingers crossed), I will be able to wear make-up on the AN side soon, but this picture means a lot to me because for the 1st time in almost 13 years I thought "I really kind of LIKE that picture!"  I guess that is a milestone...& I wanted to share it with y'all because I figured some of you would understand it more than anyone else.  I had my eye weight taken out about 3 weeks ago and I am wondering if I am going to need to have another put in.  The plan was to let my eyelid heal completely and then start over: however, I am only using one drop of Systane a day and Refresh PM at night - just like I was with the weight!!  I am very pleased about how it looks too.  I'll let you know what the Dr. says tomorrow...

Also, I really didn't tell anyone, but I have been having headaches for a while and my shoulder was really hurting.  I've tried EVERYTHING (new dinky purse, no weights at the gym) and cut everything out with that arm.  It took me a while, but I finally realized that the ONLY other time I had shoulder pain like that was right before my AN was diagnosed.  I had HORRIBLE shoulder pain and nothing would touch it - it was because my brainstem was so displaced from the tumor.  Anyway, I guess I was really kind of frightened, but I already had a Physical scheduled so I waited to talk to my Dr. then.  He ordered an MRI of the brain (w/ & w/o contrast, of course) and also the neck.  I didn't get the results until a week later when I finally called (the Dr. went out of town and the nurse was supposed to call).  All that happened with my Grandmother & I guess I just didn't want to deal with anything else - I figured no news was good news.  It was - NO CHANGE since my last MRI in 2004.  Whoo-Hoo!  They sent me the MRI reports and apparently there is something wrong with my neck but I can deal with that (probably a little rehab).

So, you may be asleep by now because this is a LONG post, especially for me, but just thought I'd let you know what has been going on in my world!! ;D

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!

ppearl214

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Re: This & That from Kaybo...
« Reply #1 on: October 15, 2008, 08:50:00 pm »
Kay, just as gorgeous as I thought the updated pic would be! Simply gorgeous... and yes, Dave looks great as well! :)

xo
Phyl
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msmaggie

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Re: This & That from Kaybo...
« Reply #2 on: October 16, 2008, 07:27:41 am »
Good news from you, Kay!  I know it must have been scary waiting to hear back, and I know you spent more than a little bit of time in prayer  :)
I had a "frozen shoulder" a few years back and had to have rehab for it.  It loosened up over time and I now have complete mobility.  Good luck with your prognosis.  The picture is lovely and you look happy...and your hubby is adorable!  You are an amazing person--upbeat and living life to the fullest.  You inspire the rest of us.

Maggie
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Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

mimoore

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Re: This & That from Kaybo...
« Reply #3 on: October 16, 2008, 07:30:38 am »
Kay you look GREAT! Thanks for the update. I am so excited for you. It must be so exciting for your children too. I know that anytime someting happens to my face the family celebrates.
I just saw pictures of me from thanksgiving and thought yikes no more pictures so I totally get that you are happy with this picture of you and your hubby. Are you taking pictures every month to see progress?
Glad to hear you eye is not being a pain for you. Hope it is healing well. Thank you for all of your support with my internal eyelid weight, it has meant so much.
Michelle  ;D
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Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

leapyrtwins

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Re: This & That from Kaybo...
« Reply #4 on: October 16, 2008, 10:13:14 am »
Kay -

I'm glad the instructions worked!!! YEA!!!  I love it when people post pictures  ;D

You and Dave look so happy - and you both look wonderful  ;D

Sorry to hear about the shoulder and neck pain, but very relieved to hear your MRI was clean.

Where's Capt Deb with that dancing puppy???

Jan
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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

Kaybo

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Re: This & That from Kaybo...
« Reply #5 on: October 16, 2008, 05:57:16 pm »
Hey Everyone!
Thanks for the sweet words!  Just a little update...I went to the Dr. today for a check-up on my eye.  The vision is a little better - still comes & goes.  I think that can be contributed to not using salve during the day.  I am not really concerned about total vision anymore anyway - I have gone so long without it & do just fine.  He said that as long as it didn't get red that I could continue to stick with the drops during the day.  I don't think I ever really got him to understand that I ONLY use them ONCE/day!!  I will be really watching it b/c of the cold weather season and heater use coming up.  He did say that my eyelid had healed so I can try make-up - YEA!!!  Basically a 1st since I had my AN surgery so long ago!!  Has anyone used the new Systane Ultra?  I had a sample and it seems to be working OK...

K   ;D
Logged
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!

LADavid

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Re: This & That from Kaybo...
« Reply #6 on: October 16, 2008, 06:37:14 pm »
Kay, that is so cool.  What a wonderful picture.  You look great  I remember those pics immediately post the T3 that looked like you got in a ring with Mike Tyson -- only you still had your ear -- and I thought, how can this be a good thing?  This picture is the good thing.  Congratulations!
David
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Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

saralynn143

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Re: This & That from Kaybo...
« Reply #7 on: October 16, 2008, 07:00:58 pm »
Nice, Kay! I am still camera shy. One of these days, though, one of these days . . .

Sara
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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

lori67

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Re: This & That from Kaybo...
« Reply #8 on: October 16, 2008, 09:18:54 pm »
Kay -  you look absolutely fantastic!  Dave, so do you.... ;)

I'm glad the MRI was good.  Sorry to hear you still have a pain in your neck... but, you know..that happens!!   :D  Seriously, I'm glad it's just something that can be fixed or dealt with without requiring another hole in your head.  I can come down and give you and your mom group PT sessions.   I was talking to my mom the other day and she said everything on the left side of her body seems to be broken and I said everything on the right side of mine seems to be the problem so we figured we can cut ourselves in half and make one whole functional person!  Maybe you might have to do that too - your legs and your mom's arms.

Keep smiling! 
Lori
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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.

NL

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Re: This & That from Kaybo...
« Reply #9 on: October 16, 2008, 09:32:03 pm »
Kay,

You look wonderful! You and your hubby make an adorable couple! Both of you look so happy - the joy just jumps off the screen! (I'm with Jan - I love it when people post pics. David - we're waiting for those half-marathon photos. ;))

Congratulations on the clean MRI, too.

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

wendysig

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Re: This & That from Kaybo...
« Reply #10 on: October 17, 2008, 06:48:42 am »
Hi K!

I love the new pic of you and Dave -- you both look fabulous and happy!  I'm sorry to hear about your neck and shoulder pain and hope that physical therapy will fix you right up.  I can kind of relate because I had terrible back pain for weeks after I got out of the hospital.  If you have one of those massaging body pads, that might help too and I found heat was great too.  I hope you're soon feeling like your usual self but even better.   :D

Sending you a giant hug,
Wendy
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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!

Omaschwannoma

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Re: This & That from Kaybo...
« Reply #11 on: October 17, 2008, 08:57:07 am »
Hey pretty lady!  Thanks for sharing your story I found it lovely and keep loving yourself as it shows through in pictures!
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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

CROOKEDSMILE

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Re: This & That from Kaybo...
« Reply #12 on: October 20, 2008, 03:55:05 pm »
Wow Kay. That's all that I can say....is WOW!
WOW! WOW! WOW!
Love,
Angie
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Captain Deb

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Re: This & That from Kaybo...
« Reply #13 on: October 20, 2008, 04:06:23 pm »


Hugs, Hugs, HUGS!!!!!

Capt Deb
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50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Debbi

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Re: This & That from Kaybo...
« Reply #14 on: October 21, 2008, 02:31:59 pm »
Kay-

You look absolutely fabulous!  I can't believe how great your smile looks - and how happy you and Dave both look.  You went through such H*** after your T3 surgery, but it looks like it was worth it.

Sorry you are having pain.  I can sympathize as I am continuing to fight neck/shoulder pain.  Hot compresses do help, at least temporarily.  Hopefully some PT will help, too.

hugs comming your way from Debbi
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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
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