Author Topic: 3 months post-op  (Read 5523 times)

TastyKakeman

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3 months post-op
« on: November 25, 2006, 10:15:12 am »
9/19/06 2.0mm AN removed by Dr. Henry Brem and Dr. Michael Holiday at John Hopkins  Baltimore. Left side face paralyzed, left eye is open, left side of my mouth is hanging down . Tried speech PT and was told by doctors that it would not be any good because the nerve has to heal. Taking regular PT for my balance and coordination that don't seem to be working either. 3 months post -op I am driving but not far or on the highways. I guess what I am getting to is I have lost self control of my left side of my face. I have always been the one who had control of things either at home or work. I no longer own my own business. I am 60 years old. I am fatigue and don't want to do anything. I am going to a therapist starting 11/29/06. I am hoping he can help me. I just wasn't ready for all these set backs. I am sure their are worst scenario's then me. I just wanted to vent so thanks everyone.   Bob 
Bob

Jim Scott

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Re: 3 months post-op
« Reply #1 on: November 25, 2006, 01:25:56 pm »
TastyKakeman:

Venting is a large part of the reason for this message board so...feel free.  You are among folks who can emphasize with your frustrations. 

I don't have any specific advice for you as I didn't suffer facial paralysis, before or after my AN surgery.  However, as a guy who is close to your age and also likes to be in control, I can certainly understand your feeling of near-helplessness.  I would likely feel the same way in your shoes.  I'm not a doctor - but the fatigue you refer to sounds like it might be incipient depression, so seeing a therapist is probably a wise course of action at this point.

I am a firm believer in the philosophy that, in this kind of situation (undergoing major surgery with post-op complications) you have to do whatever you can to take back control of your health.  I would suggest that you try to realize that even though having one side of your face immobile is a very real problem - its not something that you can't overcome, if you choose.  Due to nerve damage your face may look different and be causing you problems but you can surmount most of those and adjust to whatever you cannot change.  Again, allow me to reiterate that I'm not a physician - but I know from reading the posts of folks with post-op conditions similar to yours that, in time, you may get some facial mobility back and can improve your balance.  As this forum demonstrates, there is always hope for improvement.   Know that, and let it give you courage in the days ahead.

I wish you all the best in your recovery.   


Jim[/color]

« Last Edit: December 04, 2006, 05:26:22 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Rc Moser

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Re: 3 months post-op
« Reply #2 on: November 25, 2006, 03:44:13 pm »
I'm no doctor either, but have read alot about AN's and remember what they told me. The 8th nerve if not severely damaged from the tumor or the operation take quite awhile in most cases to come back, it goes limp, for some of us it comes back pretty quick and others it take a year or more. I think it depends on how much the tumor sack was stuck to the nerve, if it was damaged, swelling,  and how long they had to tamper with it. I read one of Tony's post that said our brains now has to work twice as hard just to stand upright and we will get tired quickly because of the constant work it has to do.

 You can get  stick on weights to temporary help you eye to close at night I wouldn't do the gold weight inside the eye lid unless you will need if for some time. Reason is most of the time within a couple of months you eye will start to close at night and blink most of the time, plus it's another procedure you will have to be put under for, and you will have to deal with the eye lid healing and the problems the weight may create inside you eye lid.

IMO if  you have no severe head pain you focus should be on preventing you eye from drying out. You will find this is very important especially at night, outside in the wind, cool temps or inside when the air is being circulated. Any air movement IMO will dry your eye out quickly. I can't even today set under the Ceiling fan on low very long. hang in there and hopefully you get some others to respond, it will or should get better in a couple of months.
 
They are several side effects of a AN brain tumor. Feeling tired, or getting tired quickly, not feeling like doing anything, balance, vision, dental, hearing, and Headaches are just a few of them. This is our life now you have to make adjustments, push yourself to get going everyday and remember if could of been worse. Hopely in a few months you will start to see some major improvements.

I'm three years and a month out. I too had all the same problems, took me about 3 months to get any strength back. I lost 27 lbs the  week I was in the hospital. had to have the gold weight put in, My eye dried out quickly and bothered me for 6 months or more.  Suffer from Migraine's and have head pain everyday.  Today, My eye waters some, usually enough to keep up unless I am in windly or dusty conditions, no sage, but no lift,  left side feels funny most of the time. When I start getting tired the left side starts saging. I still suffer from headache's and normal noises bother me. speaking voice is a little slurred and I don't like being in crowds or eating in crowd. the noise is unbareable and Feel like everybody is looking at me and wondering whats wrong with me. So what I'm tring to say is there is a lot of baggage that comes after the tumor is removed. In my case I just hope it don't come back, everything else I can deal with so far. Hang in there and get on the road to recovery!!!
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

Jeanlea

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Re: 3 months post-op
« Reply #3 on: November 25, 2006, 04:03:08 pm »
TastyKakeman,

I have a situation similar to yours.  After my tumor was removed I was left with left-side facial paralysis and numbness.  I had absolutly no movement on that side for the first 3 months.  I started to get a tiny, tiny bit of movement shortly after 3 months.  I had the gold weight put in my eye shortly after surgery for the tumor.  I've also had my lower lid lifted and the corner of my eye has a stitch or two.  It actually made my eye look better.  It's been over 14 months now and my eye still doesn't blink.  I'm hoping that in the future it will tear and blink again.
I had about a month and a half of PT for my balance with a person who treats vestibular problems.  He was amazing.  The first time I went to therapy I used a cane to help me keep my balance.  I had to do a lot of work with my eyes.  The more I moved around the better I got.  Today I was out hiking around waterfalls on tough trails.  It was no problem for me. 
Having no control of your face is tough to deal with.  I still have some days with it.  I think it made me work on my balance that much harder.  Even though that was difficult at least I could see some progress. 
People say it could be worse, and I suppose it could, but I can't help but thinking it WAS better.  But this is what we are left to deal with.  We have a choice in how we deal with it.  Most days I try to deal with it in a positive manner. 
This a great place to vent which helps us to deal with the results of AN adventures.

Best of luck to you.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Boppie

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Re: 3 months post-op
« Reply #4 on: November 25, 2006, 04:23:06 pm »
Bob,  Hang on there.  Venting is the best thing to do sometimes.  You can read about me below and see that we are alike in some ways.  I am 65 this month.  I had translab 10 days before Christmas last year.  

Your friends and family are 100% happy that you are still with them.  So, let your doctors help with the depression and know that by one year post op you will see much improvement.  

Remember that Christmas and holidays are stressfull for lots of folks, so you can be proud that you have come this far.  You will get the controls back!

 Ã‚   

nancyann

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Re: 3 months post-op
« Reply #5 on: November 25, 2006, 06:20:04 pm »
Hi Bob

I can sure relate to your situation.  I'm 5 months post op with right facial paralysis.   I had the gold weight & lateral tarsal strip to the right eye 1 month after surgery.  My eye burned so much from the dryness 'cause my eyelids wouldn't close - the eye surgery was the best thing I could have done for myself.     
The balance problems cause alot of fatigue, so rest frequently, your allowed.  I'm also going for balance therapy, it takes awhile to adjust.
 The emotional aspect of it?  well, what can I say, it's a rollercoaster;  some days are great & other days aren't so great.

Best wishes on your journey,  Nancy
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

Windsong

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Re: 3 months post-op
« Reply #6 on: November 25, 2006, 09:51:39 pm »
Hi Bob,

Venting can be good, and all the advice posted already, i am sure, is helpful.

Am wishing you slow and steady healing over the next months as I am thinking things will improve.

Was that a typo or the correct size of your An btw? I see 2 mm..... i'm sorry such a small An can cause those kinds of after effects. Maybe it was a typo and you mean 2 cm???

Best wishes,
windsong

Obita

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Re: 3 months post-op
« Reply #7 on: November 27, 2006, 07:50:47 pm »
Hi Bob:

Sorry about your post op troubles. 

Will you see your surgeon again to talk about how you are feeling?  We can loose so much when we are treated for an AN that it is real easy to feel down.

My drs. told me the best therapy was walking and looking from side to side.  Your good side will learn to keep you upright, it just needs to be challenged (alot).

Every day post op should be just a little bit better than the day before.  It is just so slow, we don't notice it. 

Hang in there Bob.  Kathy

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

jts

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Re: 3 months post-op
« Reply #8 on: November 27, 2006, 10:05:13 pm »
Hang in there.  As you can see from the various posts, no two of us are alike.  I am 5 months post op.  I had significant bruising to the facial nerve.  At first I had total paralysis of the left side.  I like to talk about my symptoms as a journey that has had numerous "stops" along the road to recovery.  First, balance was the challenge, then that switched to eye pain, then hearing loss, then tinnitus, then loss of sleep, back to balance and now the annoying thing is a runny nose and a tearing (crying) eye.  At the time that each item was at the forefront of my symptoms, it seemed like the worst was yet to come.  But, all of these things are gradually improving.  At this stage, I would say that if I never get any better, I can live with myself.  I'd like better balance, no tinnitus and to not have a drippy nose, but after reading what a lot of other folks have been through, I am just pretty happy that none of my conditions are debilitating. My local doc (referring doc) tells me that what I have in 6 months is most likely where I will stay.  My surgeon says improvements could occur throughout a 12 month period.

I have been very lucky - often the posts that we read are not very encouraging.  Progress can be slower than we want.  Just wanted you to know that at least some of us are doing OK!  In time perhaps you will also.  So I wish you the best.  John
58 year old male
Surgery June 8, 2006  Middle Crania Fossa
Dr. Bruce Gantz at Univ IA Hosp
13 months post op tinnitus AN side, mild unstable balance, slight lack of facial muscle control AN side, slight lisp, 10% hearing loss, eye and nose run when eating. Doing really well!