Author Topic: My First "Brain Dump"  (Read 21920 times)

Kaybo

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Re: My First "Brain Dump"
« Reply #15 on: October 02, 2009, 05:54:01 pm »
doc~
You have had a rough time of it, no denying that but I am here to tell you that it does get better.  I had an AN when I was 25 - my husband & I had been married just over a year.  Sounds like you had some stuff I didn't but I had a pretty rough go of it too - I had a stroke on the table.  I, too, had to relearn how to walk, talk, eat - everything - the main difference in 13 years is that they just sent me home - no rehab...wouldn't even put me in therapy until 3 months out!!  I went back to work then too (3 months - had to)...I taught 1st Grade - a pretty demanding, physical job.  I did handwriting with my students!  I still write on a bulletin board with my left hand & paper with my right (it just took WAY too long).  I had my eye completely sewn shut for 3 months - after I went back to work.  Talk about stares - I will say that the kids were great though.  I say all that not to make you feel sorry for me or to minimize what you are going thru or feeling but just to point out that even though it's bad - & it is BAD - you will get thru this.  I have a GREAT life now (even though it is a little different than I thought it would be)...I have a wonderful hubby and 3 beautiful daughters.  Check out our blog (world icon on side)...if your wife would like to talk to someone that has "been there" I would be more than happy to chat with her (as would Dave, I am sure).
Keep your chin up!

K ;D
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!

doctorb

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Re: My First "Brain Dump"
« Reply #16 on: October 02, 2009, 08:23:24 pm »
doc~
You have had a rough time of it, no denying that but I am here to tell you that it does get better.  I had an AN when I was 25 - my husband & I had been married just over a year.  Sounds like you had some stuff I didn't but I had a pretty rough go of it too - I had a stroke on the table.  I, too, had to relearn how to walk, talk, eat - everything - the main difference in 13 years is that they just sent me home - no rehab...wouldn't even put me in therapy until 3 months out!!  I went back to work then too (3 months - had to)...I taught 1st Grade - a pretty demanding, physical job.  I did handwriting with my students!  I still write on a bulletin board with my left hand & paper with my right (it just took WAY too long).  I had my eye completely sewn shut for 3 months - after I went back to work.  Talk about stares - I will say that the kids were great though.  I say all that not to make you feel sorry for me or to minimize what you are going thru or feeling but just to point out that even though it's bad - & it is BAD - you will get thru this.  I have a GREAT life now (even though it is a little different than I thought it would be)...I have a wonderful hubby and 3 beautiful daughters.  Check out our blog (world icon on side)...if your wife would like to talk to someone that has "been there" I would be more than happy to chat with her (as would Dave, I am sure).
Keep your chin up!

K ;D

You're a very strong lady and have a beautiful family; three girls, oh my.  I have two sons, one 14 and the other a senior in college at 21. Your web site is nicely done.  I decided to totally rework mine after I started posting here...see the globe.  My Eye Doctor suggested sewing my left eye shut too; I'm having a Gold Weight put in on Wednesday, the 7th of October instead.  I've read here in the Forum many positive outcomes with the weight treatment, I think I'm doing to right thing.   My AN was on the left side and as luck would have it I'm left handed.  I still have a very difficult time handling a pencil so I avoid writing whenever possible.  I have front desk folks fill out paperwork for me at Doctor's appointments or my son does them for me.  I've had that issue plaguing me well before my surgery--also trouble typing on my computer.  I started doing typing drills from an old high school typing text and have really improved my motor skills that way.  My wife is Japanese and doesn't speaking english very well or I'd suggest she speak with you.  Thanks for the offer though, greatly appreciated.

Thanks for encouragement!

Doc
>:( I'll be back!  >:(


 

ppearl214

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Re: My First "Brain Dump"
« Reply #17 on: October 03, 2009, 06:18:54 am »
"Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.  

Please allow me to introduce Freddy to Zoe Bean (Beanie), the infamous healing "toot Queen" (for those that have been here for a while.... you all know her *coff* healing powers by toots).




*looks around for Brendalu as well*

Phyl

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

doctorb

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Re: My First "Brain Dump"
« Reply #18 on: October 03, 2009, 06:35:35 am »
"Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.  

Please allow me to introduce Freddy to Zoe Bean



So the Dr. Phyl is a Pug Dog person too...way cool!  I'm going to build a Photo Gallery of Freddie the Wonder Pug today my web site...stay tuned for news!

ppearl214

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Re: My First "Brain Dump"
« Reply #19 on: October 03, 2009, 06:42:03 am »
"Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.  

Please allow me to introduce Freddy to Zoe Bean



So the Dr. Phyl is a Pug Dog person too...way cool!  I'm going to build a Photo Gallery of Freddie the Wonder Pug today my web site...stay tuned for news!

"Pug Parent"   :)

If you need something to cheer you up, try reading "Clara, The Story of the Pug that Ruled my Life" by Margo Kaufman OR "The New Pug" by Shirley Thomas. Guaranteed to lift spirits.

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

doctorb

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Re: My First "Brain Dump"
« Reply #20 on: October 03, 2009, 01:33:24 pm »
Here you go Phyl, a little Gallery of Photos of my best buddy "Freddie the Wonder Pug."  Just like with my Heart Surgery last year, when I finally came home from my AN Hospital stay, Freddie spent every day, and night in the bed with me for the first ten days or so.  Tell me dogs don't understand human frailties.  :)





« Last Edit: October 05, 2009, 06:15:02 am by doctorb »

moe

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Re: My First "Brain Dump"
« Reply #21 on: October 03, 2009, 10:43:52 pm »
Dear Doc,
It is very therapeutic to dump those feelings and hopefully helps you feel better doing so. You have been through a lot and what is important to see is that there are others out there who have been through the same thing (and even worse >:( )
I predict you will be on top of this game in no time.
I held in my feelings and such post surgery because of crazy family situation (hubby was stationed in WA, I was back in TX with the kids so one could finish high school-I went to WA for the surgery, came back to TX  and resumed life at a slower pace).
When I joined this forum I felt so pent up with so many emotions that I had been holding in for years.
I'm still venting and feeling angry/anxious/depressed at times three years post surgery.
So let it flow......
We're here to listen and support. :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

doctorb

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Re: My First "Brain Dump"
« Reply #22 on: October 04, 2009, 09:45:13 am »
Thanks Maureen...you know, I have a sister named Maureen, she lives in North Carolina.  Anyway, thanks for the kind words, I certainly hope you're right about my potential for a quick come back.  And yes, I've spent quite a bit of time reading the forum, my experience, as bad as I though it was, has been a cake walk compared to other I've read.  Like I said elsewhere, I'm not done brain dumping either, I still harbor a lot of angry that's slowly passing.

On a positive note, I found some new water-proof medical tape and a different brand of stick on eye patch at Wal-Mart that work really great keeping my left eye shut, so I'm a little less angry about that part of my life.  If you look at the cover page on my web site, click the globe at left, you'll see I built a "Recovery Milestone Clock" that counts down the time to the next big event in my treatment...pretty cool idea I think and just making the clock was good therapy for me...I haven't forgotten how to code.

You sound like a very strong woman, most military wives are...personally, I couldn't have done what you did. I was in the military, did 20 years before retiring from the Air Force.

You take care, enjoy your Sunday afternoon and thanks again!

Doc

tenai98

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Re: My First "Brain Dump"
« Reply #23 on: October 04, 2009, 04:41:27 pm »
Doc
Here is another suggestion...as your wife join our 'family'?...It would be great for her to read the caregiver section and other sections to somewhat( I said somewhat as no one knows what we go thru unless they have been there themslelves) grasp the journey we are travelling.
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

doctorb

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Re: My First "Brain Dump"
« Reply #24 on: October 04, 2009, 07:46:17 pm »
Wow Cheri, I sure am glad my Macbook can convert text to speech, you sure can write long responses...just kidding.   ;)  If it's ok with you, I'll just go to sleep tonight glad I haven't had to face some of the challenges life has dealt you and yours.  Between your run in with this AN stuff and what you've gone thru with your family, my problems don't seem so bad anymore.

Thanks for supporting the idea of "brain dumping."  Believe it or not I actually got a real positive boost from writing that the other day.  I'm not done yet shedding that feeling of frustration that unfortunately manifests itself as anger with me.  I'll keep working on that and hopefully someday soon it will pass.  Right now though, I have to get some sleep.  I can't stay awake past ten anymore; my dumpy brain can't handle it!  I'm also experiencing something new today--my incision site has been throbbing widely for about three hours now, not sure whats all about?!?

Thanks again for being so supporting and sharing and post a picture of Josie so I can get a look! 

Doc

doctorb

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Re: My First "Brain Dump"
« Reply #25 on: October 04, 2009, 08:16:33 pm »
Good, the throbbing is nothing I should worry about than.  I don't have a problem sleeping on the AN side which happens to be my deaf ear from long before the surgery.  I keep the deaf ear up to the air so I can't hear my wife grind her teeth; I've been doing that for years now, its works quite well!
 
 :)
Doc


« Last Edit: October 05, 2009, 06:15:36 am by doctorb »

TP

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Re: My First "Brain Dump"
« Reply #26 on: October 05, 2009, 05:58:04 am »
Doc, a very positive thing will happen to you this week; getting your gold weight will be a big blessing for you. After three brain surgeries what bugged me the most was my eye problems. I "hated" (harsh word but that was how I felt) my eye not being able to close. All the tape and eye patches so when they inserted that gold weight into my eye lid and I could close my eye on my own and sleep without having an eye patch, well that was one of the best days during my recovery. I wore my gold weight in my eye lid for about 16 months and when they removed the gold weight I ended up using that little piece of gold and made me a beautiful pendant that I wear around my neck in order to remember that period of my life.

The gold weight surgery is a very simple procedure and you will need to use eye drops and it may irritate you a little but it will close your eye and you will feel a little more normal and that means a celebration is in order!!   
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

doctorb

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Re: My First "Brain Dump"
« Reply #27 on: October 05, 2009, 06:23:22 am »
So they were able to save your hearing on your AN side? 

No, there was no saving or fixing the hearing in my left ear, I went deaf over a decade ago.  Turns out it was probably from the AN but none of the Doctors I've seen for the AN has said what they think caused it.  I've been deaf so long, and have learned to compensate for it in so many different ways, I hardly notice it except when I'm in business meetings with a lot of people and sometimes can't discern who's talking. 

Doc

doctorb

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Re: My First "Brain Dump"
« Reply #28 on: October 05, 2009, 06:26:16 am »
Doc, a very positive thing will happen to you this week; getting your gold weight will be a big blessing for you. After three brain surgeries what bugged me the most was my eye problems. I "hated" (harsh word but that was how I felt) my eye not being able to close. All the tape and eye patches so when they inserted that gold weight into my eye lid and I could close my eye on my own and sleep without having an eye patch, well that was one of the best days during my recovery. I wore my gold weight in my eye lid for about 16 months and when they removed the gold weight I ended up using that little piece of gold and made me a beautiful pendant that I wear around my neck in order to remember that period of my life.

The gold weight surgery is a very simple procedure and you will need to use eye drops and it may irritate you a little but it will close your eye and you will feel a little more normal and that means a celebration is in order!!   

Wow TP, you've got me all excited now about the procedure.  It was originally schedule for last Wednesday but there was a paperwork snafu.  I'm really looking forward to not having to tape my eye shut anymore, that really bites!

Thanks for the encouraging words!

Doc

JerseyGirl2

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Re: My First "Brain Dump"
« Reply #29 on: October 05, 2009, 09:30:08 am »
  I just had my one year post op anniversary this past Friday.

Cheri,

You have been through a lot over the years, but it sounds as though your faith and positive attitude have been a big help. I hope that your one-year surgery anniversary was a good one and that the future will have wonderful things in store!

I remember that you had written (quite a while back) that you were going to go back to House for your one-year post surgery MRI -- are you still planning to do that? If so, have a great trip and equally great MRI results!!

Catherine (JerseyGirl 2)
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