Author Topic: Is anyone like this also?  (Read 5126 times)

phx

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Is anyone like this also?
« on: June 01, 2011, 08:29:14 pm »
My tumor is on the left side of my head. I feel some paralysis on that side, but the funny thing is that if I laugh, smile, frown, etc. (as long as I'm using the muscles in my face), I can feel the muscle below my left eye pull. Is that normal? There's no pain, but I  assumed that if I had facial paralysis on that side, the muscles shouldn't be pulling that much. If I look in the mirror, I can see the muscle move. It's not twitching. My left eye twitches and so I know when it is twitching. I'm wondering this this might have something to do with how I can't cry out of that eye anymore?

Suu

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Re: Is anyone like this also?
« Reply #1 on: June 04, 2011, 06:56:07 pm »
G'day PHX

Can you tell us a bit more about your AN?  Have you still got it or has it been removed?
If you've had the surgery, how long ago was it?  The time between having it removed and getting symptoms of reanimation of your facial muscles may have a bearing on what you're feeling now.
Will look forward to reading more.
Regards,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

phx

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Re: Is anyone like this also?
« Reply #2 on: June 04, 2011, 10:22:32 pm »

Reanimation? I would really appreciate it if you could explain more.

My tumor was orignally about 4x3x3 cm. I had surgery to remove it in Feb. 2010. Doctors managed to remove about 30% only because of the tumor location. After that it was about 3x2x1.9 cm. I had cyberknife done in August 2010 and then had a shunt put in just this past April. At my last appt., the doctor said the tumor was dying and might be shrinking.

G'day PHX

Can you tell us a bit more about your AN?  Have you still got it or has it been removed?
If you've had the surgery, how long ago was it?  The time between having it removed and getting symptoms of reanimation of your facial muscles may have a bearing on what you're feeling now.
Will look forward to reading more.
Regards,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu

Suu

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Re: Is anyone like this also?
« Reply #3 on: June 05, 2011, 01:27:17 am »
Hi again,
So you still have the face droop or palsy?  It still seems as though you are getting movement back into your facial nerve.

There are many facial 'reanimation' techniques and many people on here have had different ones done.

One is transplantation of the temporalis muscle and platysma muscle to the corner of the mouth. - if you put that into a search you should come up with some answers.
There's also the 12/7 nerve graft - where your tongue nerve is literally grafted to your facial nerve.

These depend on a heck of a lot of factors like time, if the facial nerve was left in tact etc

I'm going to have the 12/7 nerve graft done on the 16th if I can get rid of the cold that I've picked up and will write about it when I'm able. 

The best person to ask about reanimation is your doctor. 

Are you able to attend this --

ANA 20th National Symposium
 
Friday—Sunday
June 17-19, 2011
 
Hilton
Netherland Plaza Hotel
Cincinnati, OH

I would dearly love to wave a magic wand and be there (I live in Australia) but I'm going to save up my million questions for those that go and can answer them on here for me.

Kindest regards,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

nftwoed

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Re: Is anyone like this also?
« Reply #4 on: June 05, 2011, 01:01:17 pm »
phx

  You wrote: "I'm wondering this this might have something to do with how I can't cry out of that eye anymore?"  < Yes.
  But; You haven't had any treatment yet, have you? How large is the AN?

phx

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Re: Is anyone like this also?
« Reply #5 on: June 05, 2011, 07:44:12 pm »

The AN is about 1.9x3x3 cm. I had radiation last August. I didn't notice that I had no tears in that eye until  after my VP shunt was put in, which was just in April.

phx

  You wrote: "I'm wondering this this might have something to do with how I can't cry out of that eye anymore?"  < Yes.
  But; You haven't had any treatment yet, have you? How large is the AN?

Suu

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Re: Is anyone like this also?
« Reply #6 on: June 07, 2011, 12:40:22 am »
Hiya PHX
I had a look at some of the other threads you've written in so I could get a good understanding of what's been done and not done to you so far  ;D

So you've had a 4cm AN partially removed?  And have you been left with a 1.9x3x3 cm after the remaining part was shrunk with radiation and that you're having treatment for now?  Have I got that right? (I get a bit muddifuddled with reading so much sometimes :))

If this is right then your symptoms do sound like what most of us are going through post-op.

Some of us can't cry out of the affect side and that's why some of us need eye lube/ointments/fake tears etc to prevent the eye from drying out.
Do you have facial palsy (drooping of the AN side of your face)? 
If so have you noticed movement coming back or have you had movement all along since the original surgery?
Warm regards,

Suu
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

phx

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  • Posts: 91
Re: Is anyone like this also?
« Reply #7 on: June 07, 2011, 08:33:42 pm »
Yup, you've got it right! I actually think my face looks more droopy on the right. My left side (AN side) responds faster when I move my muschles (at least that's what I feel like). I just noticed this after radiation. I didn't notice much after my surgery besides my left side being a little weak. This actually got better before radiation.

Hiya PHX
I had a look at some of the other threads you've written in so I could get a good understanding of what's been done and not done to you so far  ;D

So you've had a 4cm AN partially removed?  And have you been left with a 1.9x3x3 cm after the remaining part was shrunk with radiation and that you're having treatment for now?  Have I got that right? (I get a bit muddifuddled with reading so much sometimes :))

If this is right then your symptoms do sound like what most of us are going through post-op.

Some of us can't cry out of the affect side and that's why some of us need eye lube/ointments/fake tears etc to prevent the eye from drying out.
Do you have facial palsy (drooping of the AN side of your face)? 
If so have you noticed movement coming back or have you had movement all along since the original surgery?
Warm regards,

Suu