Author Topic: Be prepared...  (Read 3516 times)

marjoryb

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Be prepared...
« on: November 15, 2006, 12:04:54 pm »
I spent sooooooo much time in anticipation of my surgery (in July) and very little time thinking about this side of things.    I knew that I could possibly lose hearing - and I did.   I knew that I would get headaches - and I do.  I knew that I would feel dizzy - and, man, am I dizzzy.   BUT - I never put it into perspective and never thought about recovery being so hard and long.    I thought I would be back on my feet and bouncing around in just a few short weeks.      I guess I must be having a bad day  .... I feel like I'm never going to get outside my head!

The only UP side is that I'm not alone and I have this forum for finding sanity.   Thanks to all of you.

Marjoryb :-\

nancyann

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Re: Be prepared...
« Reply #1 on: November 15, 2006, 12:35:28 pm »
Hi Marjory:  Believe it or not YOU ARE COMING ALONG BEAUTIFULLY!!!!!!, all the normal post effects we soooo look foward to everyday!!!    I'm almost 5 months post op and never would I have thought I'd still feel this way, the dizziness, which makes you sooo exhausted/fatigued daily, the headaches/constant head stuffiness.    I'm told it does get better,(in our lifetime?  lol) everyone heals differently.  So, I'm expecting to feel like this for a year or 2, 3.....?    Yesterday was my bad day, & you know what? WE'RE ALLOWED.  Be good to yourself, don't beat yourself up because you don't feel like yourself yet (I'm taking my own advice)  Phyl (?) in the Fatigue post under Gerneral Discussion has a piece you can look up on the internet re: fatigue.   I read it & did get relief to know all these symptoms are expected.  So, take it easy when you have to, go a little slower, & try to enjoy life's ride.  Nancy
PS  Last night I took 2 Aleve tabs & this morning my head wasn't as stuffy and tight!!(I had been taking Tylenol xtra strength, thinking Aleve wouldn't be good, but I feel much better today )- you may want to give it a try??
« Last Edit: November 15, 2006, 12:50:44 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Brendalu

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Re: Be prepared...
« Reply #2 on: November 15, 2006, 04:04:06 pm »
Marjoryb,
We think we can prepare ourselves and we can't really.  We really have to take one day at a time and accept the new "me" and be the best at it you can be.  Take good care of your self.  Be your own best cheerleader.  Give yourself a hug when you need one and know that we are all here for you whenever you need us. This isn't the easiest thing you'll ever go through...............but it doesn't have to be the hardest either.
Hugs,
BrendaO
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Pembo

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Re: Be prepared...
« Reply #3 on: November 16, 2006, 09:21:12 am »
Marjoryb, I don't think anyone can really prepare you for the ups and downs after surgery. Some days I was just angry at the world. We have to go through a period of greiving after surgery and it's different for everyone. I really hate the words be patient and it takes time, but it does. My surgery was over 2 years ago and I remember those tough days but take heart in the fact that things do get better and yes this forum is a wonderful place to just vent away.

Stay strong..........
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Gennysmom

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Re: Be prepared...
« Reply #4 on: November 16, 2006, 09:41:37 am »
I'm about the same distance out that you are Marjory and I can totally relate.  I am "doing really well for 4 months out", and I know I am, but some days I want out of my head.  I'm lucky, no headaches....my face is about 60% back....I can work, I can generally function, but some days I just give myself "bad day" permission.  I went in so knowledgeable, knowing it could take a long time and that various things could go sideways, but I wasn't prepared for the 24/7 fishbowl head thing.  I don't think you could ever really imagine it until you experience it, no matter how well we describe it.   I think it really helps to notice the small things that tell you you're improving.  The next thing I'm working on is trying to get the straw to work past the middle of my lips. 

This forum is so invaluable in helping to work past bad days.  Good luck on continuing improvement!!!!!!!!!!
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

marjoryb

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Re: Be prepared...
« Reply #5 on: November 21, 2006, 07:50:11 am »
Gennysmom

Thanks for the response - it seems we are somewhat parallel in our recovery (except for the headaches).   I have an appointment today with my doctors.    I have been keeping a daily log and have a list of questions - most of which have been addressed by this forum but it'll be nice to hear what they have to say.   It'll be the first time I've been back to them with a follow up MRI to show.     

I know what you mean about the straw.  I'm trying to get to the point of drinking from a glass - preferably a wine glass - without dribbling all over the front of my shirt!    Is it socially acceptable to drink wine from a straw?
I have holiday parties filling up my calendar!


Marjoryb

Marjoryb

Palace

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Re: Be prepared...
« Reply #6 on: November 21, 2006, 08:50:45 am »
THE LIST:


November 27th, 2006 Stanford, Fractionized Steriotactic Radiosurgery (Palace here)  FSR 11-29, 30 & 12-1
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness