Author Topic: 8 months post op, having a reverse brain? =)  (Read 8341 times)

sunshine16

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8 months post op, having a reverse brain? =)
« on: July 21, 2006, 12:46:07 am »
Hi Everyone, 

It's been a very long time since I logged in here or even post something.  I have not been feeling too good lately. 
8 months post op and I can't believe that I still feel very weak at times.  Still have the half facial paralysis (wuz up w/ that?, I was told in 6 months I should be able to move atleast the lip area?)  Still do feel pain on my AN side.  And oh yeah, I've been using lots of eye cream and eye drops....... 

Anyways,  I've been noticing that my memory got worse.  And has anyone had this?  I always say the reverse or opposite of what I intend to say like for example......  I'm thinking LEFT but then I would say RIGHT?  OR  I'm thinking of BIG but I would say SMALL?  OR thinking of HE but will say SHE?  Am I losing my mind or just careless me?  And sometimes I say something that I already said.  That's the most part that bothers me that is very, very hard for me to comprehend.  When someone talks to me, it takes a while to absorb what he/she is saying...... I don't know if it is because I'm deaf on one ear?  Is it my brain? I tried to exercise my mind by doing crosswords online, reading......  but everytime I do it, I get headaches.... 

so my biggest concern is the fatigue and my reverse mind or brain? he he he.


Windsong

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Re: 8 months post op, having a reverse brain? =)
« Reply #1 on: July 21, 2006, 03:26:06 am »
hey hi,


glad to see you posting with your own Hi...

i am sending you good wishes and all good things for better days.

i see you have had some months since your treatment and i see you would like to be farther along....

i am sending you really good super wishes, lots of energy, lots of healing....

 i am glad you wrote in and i saw your post.

be well and be better,
windsong

i

Raydean

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Re: 8 months post op, having a reverse brain? =)
« Reply #2 on: July 21, 2006, 04:46:01 am »
Hi Sunshine

I'm really sorry that you're going thru all of this.  Regarding the facial paralysis please consider having a EMG test done in the near future so you'll know the numbers on where you're at, at this point in  time with your nerve response ( or lack of response).  At a later date a second one can be done for comparison.  This will help provide you with the needed information enabling you to make the decisions
on what direction to take, or not to take.

I know that this is going to sound wierd, but my husband had a similar outcome as yourself.  Without his job, and as much interaction as he had with people prior to the AN treatment I noticed that his conversations were limited. Looking back at that time reading was difficult, few people to talk to, I think his skills just slipped.  I made it a point to watch the news and dicuss whatever,  I also put him on the computer.  PLAYING GAMES.   Just different ones, especially the ones that involved memory.
eye hand coordination, word games especially.  Anyway it really helped. Improved his memory. helped with small coordination, but all in all made a difference in his daily life.  Langage skills improved.
Feel free to write me direct and I'll share more.  But it's worth a try.  Stress and fatique also tends to increase the word reversal for Chet.

Sunshine, things will get better, just more slowly then we would like. Know that you aren't alone, others have and are facing the same issues as yourself.  Know how valuable you are, you are a lady of courage and inner strength to of face everything and still move forward. You haven't gave a inche!!!!  You've shown incrediable strength of spirit.
Most of all know how much we care and how much we missed you these past few months.  I was really excited to see your post and to have you back.

As I said write me direct.
Hugs to you
Raydean 
Do not go where the path may lead, go instead where there is no path and leave a trail.

ppearl214

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Re: 8 months post op, having a reverse brain? =)
« Reply #3 on: July 21, 2006, 05:39:56 am »
Myla,

Do you know the HUGGLES that I am sending your way?  You know I'm always cheering you on, hoping to hear updates and sending you such amethyst huggles!  Hang in there hun..... my cheerieading outfit is a wee bit tight (dang decadron) but know you will be fine...

Raydean, fantastic suggestions... huggles to you all and yeah, even Chet! ;)

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

vcschaub

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Re: 8 months post op, having a reverse brain? =)
« Reply #4 on: July 21, 2006, 01:46:54 pm »
During the first few months after my surgery, I also found that I was reversing words in sentences and struggling to come up with many words. I also would have a delayed reaction to what people were telling me. It has slowly improved, although I still struggle with certain terms or words. I'm not sure what causes it, but I am completely sympathetic to your situation. Hang in there!!
6mm
Middle Fossa November 8, 2005
Drs Brackmann and Hitselberger
House Ear

sunshine16

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Re: 8 months post op, having a reverse brain? =)
« Reply #5 on: July 21, 2006, 02:11:20 pm »
Thanks everyone.........  for all the suggestions, love, and thoughts....... 

Hey, Phyl..... I miss you.  How are you doing? 

I sent you an email Raydean......  But not sure if ur email add still works.  Anyways,  I wanted to know who do I go or ask to have an EMG done like you have suggested.  Does it hurts?  Do I ask a family doctor?  ENT doctor? Surgeons? Internist? 

Raydean

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Re: 8 months post op, having a reverse brain? =)
« Reply #6 on: July 21, 2006, 03:01:45 pm »
I emailed Myla direct but wanted to share part of my response for others that may be considering having this test done. Personally, for us we found the test very valuable.

I think the surgeon, or ENT could order this test for you, maybe even your family doctor..  I'm pretty sure a doctor has to order it, but you would have no problems in  being referred.  There are enough significant medical reasons related to facial paralysis that would warrent this test.  It's done by a neurologist and I think you'd want to check with your Doctor on which neurologist is best for this.  Chet's was done at a hospital, but that was because that's where the equipment was, it could very well be done in a doctor's office. 
 
As an observer i found it fascinating to watch and was pretty much able to follow the responses  Did it hurt, Chet said to tell you not really.  It just looks worse then it actually is.  I just checked with Chet and he said to tell you didn't  hurt, n
but he found it uncomfortable wben they were testing near the eye. (he doesn't like anything near his eye) At that point the Doctor stopped in that area.  He also said to tell you that it's important to get the best.  With a less experienced doctor he thinks it could hurt, or be uncomfortable.  Chet's doctor would only allow one particular doctor to do the test.  Told us if any other doctor was scheduled, to cancel and reschedule with  the one doctor.
 
By having 2 done 6 months apart we used the first test as a baseline, then compared the two tests results.  It really helped us to focus and decide on which route to take.

Hope this helps.

Raydean
 
Do not go where the path may lead, go instead where there is no path and leave a trail.

ppearl214

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Re: 8 months post op, having a reverse brain? =)
« Reply #7 on: July 21, 2006, 03:20:46 pm »
Thanks everyone.........  for all the suggestions, love, and thoughts....... 

Hey, Phyl..... I miss you.  How are you doing? 



Hey Myla!

Ok, how I am doing?  Read this...

http://anausa.org/forum/index.php?topic=1607.0

Other than that, hanging in there and staying strong.. .but most of all, sending you MASSIVE huggles!!!!!!!

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

sunshine16

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Re: 8 months post op, having a reverse brain? =)
« Reply #8 on: July 21, 2006, 04:15:55 pm »
Hi everyone again. 

Phyl, congratulations I'm so happy for you.  What a good news.  You and Ian should consider coming here to Vegas together..... 

Raydean thanks for the email.  Appreciate it ;)

And lastly just want to post this, incase someone is interested.  http://www.emedicine.com/plastic/topic218.htm

Take care everyone, and God Bless

Myla
   :) sunshine16 :) :)

matti

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Re: 8 months post op, having a reverse brain? =)
« Reply #9 on: July 21, 2006, 10:55:02 pm »
Hi Myla - I've been wondering where you have been, we've missed our Sunshine :-*

I can definitely relate to reverse brain. Very frustrating at times!!! I not only mix up my words when I speak, but also while typing. In my mind I know exactly what I want to say, but as soon as I start speaking, something opposite will come out. If I intend to say "hot", then I find I am saying "cold".  I also struggle to find the right words and quite often do not finish my sentences. My husband usually steps in and finishes them for me.

I also do crosswords and various other brain teaser puzzles :-\

Sending hugs!
Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

sunshine16

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Re: 8 months post op, having a reverse brain? =)
« Reply #10 on: July 21, 2006, 11:13:26 pm »
does anyone here knows the reason for this reverse mind? 

matti-  I do exactly....... 

tony

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Re: 8 months post op, having a reverse brain? =)
« Reply #11 on: July 22, 2006, 02:36:06 am »
I would just add that at 4.5cms - that was a big OP
(same size as mine)
Consider this : at 4 mths post OP I couldnt even walk.
The strength and stamina does return - it just takes time
We are dealing with nerves here, and 6-12mths  is the typical
repair time even where mere bruising or swelling is involved
To some degree you still have the OP drugs to consider
They are powerful (they need to be).
You might look at outdoor type activity that would help
with balance and/or co-ordination
At this stage make sure you have an escort
- you dont know if/when fatigue may reach you.
So if its country walks - build up slowly
and take a break if you tire.
Overtime you will notice the distances
get easier as will the normal
day to day stuff
Best Regards
Tony

ppearl214

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Re: 8 months post op, having a reverse brain? =)
« Reply #12 on: July 22, 2006, 11:20:34 pm »
does anyone here knows the reason for this reverse mind? 

matti-  I do exactly....... 

I wish I did, Myla... but I have a VERY tight-fitting cheerleading outfit on for you (trust me, not a pretty sight) and am checking into some cognative therapies myself... memory stinks....

Hang in there girlie... you know where the huggles are coming from here! :)
xoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

sunshine16

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Re: 8 months post op, having a reverse brain? =)
« Reply #13 on: July 23, 2006, 12:16:43 am »
I just want to say thank you so much everyone for all your inputs.  I really appreciate it.  I don't know why sometimes I feel, I'm the only one going through this.  I just don't like when sometimes my husband makes fun of me when I'm lost mentally, I feel as if I'm the dumbest...... he he he......  Atleast I can still translate my language in English...... he he he......  And atleast I still remember my name and where I live.  Just don't ask me phone numbers or ask me to repeat what you just said, coz can't remember that well anymore..........  Even doing Mathematical Calculaitions in head is such a struggle now adays.........   >:( >:( >......  good thing cellphones come w/ calculator...........he he he...... 

Kathleen_Mc

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Re: 8 months post op, having a reverse brain? =)
« Reply #14 on: July 23, 2006, 03:45:58 am »
Sunshine: Your husband makes fun of you when you're lost mentally????Does he have difficulty remembering you had brain surgery?? He should not being doing that. I wouldn't tolerate that. I remember when my husband and I had not been together too long, I think our son was around 6 months old so we'd been together around 18 months, I always kept the baby monitor turned up really high because I sleep on my good ear, I guess the "white noise" was bothersome to my husband and he got really frustrated and made some comment and got up and turned the monitor off. I told him them that I am hearing impaired and this is the way it is and that if he can't live with it that's his problem and that I didn't like his intolerance of something I can't help (I also turned it right back up).
Kathleen
« Last Edit: August 07, 2006, 01:27:03 am by Kathleen_Mc »
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)