Author Topic: Where do I start?  (Read 5985 times)

marg

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Re: Where do I start?
« Reply #15 on: December 29, 2008, 01:17:55 pm »
Samantha,
    I think the first 3 months were the hardest.   I have some facial paralysis too (but it is much better than it was  even a year ago).... and my left eye wouldn't close all the way at first. It still doesn't quite close all the way when I blink - but  I can make it close all the way when I think about it.  The most important thing is to keep your eye moist with eye drops or gel.  I couldn't focus well out of my left eye for about 3 months (seems like forever but it does get better) I did check with my eye doctor which was a good thing - you might want to have your eye doctor look at your eyes. 
     I know that this is all VERY difficult but it will get better.  Hang in there,
marg
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

LADavid

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Re: Where do I start?
« Reply #16 on: December 29, 2008, 04:09:15 pm »
Hey Samantha -- as a positive person to another -- stick with it.  If I look at my progress from a week ago -- even a month ago until now, I see no progress.  But when I compare it to a year ago, I see a huge difference.  The changes are so small.  And I too live alone.  There is no one to vent to or to look to for encouragement.  But I have found through regular involvment with the folks on this forum, I have been able to stay away from negative thinking.

And for the neck issues, I think they break our necks during surgery and forget to tell us that they did.  I use an herbal neck wrap that I throw in the microwave for a few minutes.  It does wonders.  If you want to check it out, here's the website www.herbalpack.net

And I didn't happen to notice where you live, but you may want to check around to see if there is a support group in your town.

Wishing you the best

David
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

1cANAdian

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Re: Where do I start?
« Reply #17 on: December 29, 2008, 07:44:15 pm »
Hello Samantha,

Lots of "dittos" on the comments that have already been posted.  The folks on this forum have a great capacity to provide good information and good feelings. 

For me, it has been three weeks since surgery.  The most frustrating issue I have to deal with is the clarity of vision in my AN side eye.  Post surgery I had double vision.  Then after 5 days it went away.  If my vision stayed as good as it was that day, I believe I could have stopped wearing glasses!  But alas, the next day the vision in my right eye was bad again (not technically double vision, but blurry like really bad astigmatism).  Then it was ok.  Then not.  It has varied a bit each day since.  Never great and glasses don't help.  Like you, I'm waiting patiently for signs of permenant improvement.

Before I was disharged from hospital, I did have an opthamologist check me over.  He said the eye itself is fine, which was good news.  He did indicate that I needed to keep it moist (wasn't fully closing at the time).

As mentioned by others, we each respond to surgery differently and heal at different rates, so keep up a postive outlook, and be patient. 

Cheers!  (and Happy New Year!)

Ken
Right side trans lab surgery on Dec 8th, 2008
4+ cm AN removed
Post Op Symptoms: SSD, tinnitus, facial numbness, minor balance issues, weakened facial nerve
Attitude: POSITIVE

Kaybo

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Re: Where do I start?
« Reply #18 on: December 29, 2008, 08:53:29 pm »
Hi Samantha~
Once again, this site is not showing me all of the "unread posts" correctly so I didn't see this thread until tonight.  You have received some WONDERFUL responses already but I wanted to throw my hat in the ring too because I DID have most of what you are talking about, including the hand.  However, mine was the WHOLE right side, not just my hand.  They said that I had a stroke on the table but not a regular stroke, a "surgery induced stroke" so it was all on the same side as my tumor.  I don't know what all that means, I just know that I had to relearn EVERYTHING (I even had to relearn speech as I had reverted back to my childhood - didn't even acknowledge my sweet hubby b/c he wasn't around when I was a little girl!)!  As the others have said, you are still not very far out and even though the recovery REALLY STINKS, it WILL get better.  You can go to my blog if you want & see what my life is like now 13 years later - I was only 25 when I had surgery - the address is below.  I went back to teaching 1st grade (high energy) in 3 months - even though I didn't feel like it! - and then on to have 3 daughters.  I still get tired, lose my balance, and have a paralyzed face but I am alive and I have a GREAT life!

On the eye issues (this is for you too, Ken) - PLEASE keep your eye very moist at all times - even when you think you don't need to.  I went for 7 years before I got a gold weight and so I used Refresh PM 24/7 - therefore, I did not really have any vision in that eye b/c the salve distorts it (& I had horrible - 20/400 - vision in that eye to begin with).  I drove and did everything I needed to with only seeing with one eye.  After I got the weight, I only put the Refresh PM at night and used a drop of Systane in the mornings (or if it got red).  My vision improved, but it is not constant because if your eye is not blinking ALL the way, it is not getting the moisture it needs all over the surface of the eyeball.  I have 1/100 of a second where I might see perfectly clearly, but then it goes away.  Does that make sense?

Please do not despair that you will end up with the "problems" that I have (I don't even think they are problems anymore!), I had a very large tumor and it was 13 years ago.  Modern medicine has progressed so much, even in that amount of time.  Most people today do NOT have the lasting effects that I have.  I would LOVE to chat with you on the phone - please send me a PM if you would like to talk!


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!

epifania74

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Re: Where do I start?
« Reply #19 on: January 21, 2009, 06:28:02 pm »
Hey Samantha!!

Welcome to this site!!! I too lurk around in the background on this site, but your post has compelled me to come out into the light and to stop playing with the backdrop.. ;D ;D ;D I know if only you knew what you do now.

I had a 6cm ACN, I was still young well if you can call 33 young..Fit healthy and active, only went to the drs for flu shots, and the odd sniffle.  So imagine my surprise when my face began to get numb..I started walking into doors..it was even hard to write..hey my penmanship is not too bad..but my handwriting was atrocious..

I remember the first year was hard..in that I felt so depressed about my facial paralysis, I guess its just something we all have to deal with.  A hurdle although King Kong like, we are all faced with..You have to relearn things like walking and talking..it does get easier..Know that we are here for you!! If I had known about this site earlier it would have lessened the load alot, knowing that there are people who are going through the same thing.

Please know we are here for you!! You are not alone!! Drop me a line or even pm me.
« Last Edit: January 21, 2009, 08:17:06 pm by epifania74 »
Tumour size 6 cm.  Operated Feb 2007
Central permanent Tarsorrhaphy  x2 performed Feb 2007 and May 2007
Radiation March 2008
Right facial palsy and total loss of hearing in right ear.