Author Topic: Any good news on this site?  (Read 12699 times)

Joe_L

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Re: Any good news on this site?
« Reply #15 on: February 03, 2015, 08:41:41 pm »
I have a scleral lens from BFS due to no eye blink. Without this, My eye gets irritated very quickly.
With the "device", I feel mostly "normal". It's really just a special contact lens, lots of people have contacts.
I hope the paralysis goes away and I don't need the lens forever, but who knows. It's early for that.
Taping the eye shut at night does kind of suck, my wife always does that for me.
My numbness is zero, funny taste on my tongue sometimes though.
Hope this helps.

Joe
5/29/2013 4.8 cm retrosigmoid tumor debulk (Dr. Maurer-Rochester, NY)
4/29/2014 retrosigmoid surgery to fenestrate cyst (Maurer)
5/23/2014 translab removed tumor and cyst grown to around 6.5 cm (Friedman/Giannotta)

feline

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Re: Any good news on this site?
« Reply #16 on: February 03, 2015, 08:45:59 pm »
I don't have a blink either and my doctor advised me to have a permanent taroplasty done which is suturing the eyelids have way closed for several months will see what happens
Feline
Walnut size AN removed on June 30 2014 at Stanford with Dr Chang and Dr Blevins facial paralysis, no blink ,no hearing but otherwise feel good otherwise

Kristena

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Re: Any good news on this site?
« Reply #17 on: February 04, 2015, 09:09:20 am »
Feline, I'm not sure why the doctor is recommending permanent suturing, especially since you aren't even a year post-surgery. Many people have a stitch or two put in, and they can be removed at a later date if warranted. Hopefully you can go with the temporary type. Best of luck to you! I wish I had opted for the eyelid weight. I seriously think it might have lessened the synkenesis I am experiencing now around my eye--but I'll never know!
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

Mimispree

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Re: Any good news on this site?
« Reply #18 on: February 04, 2015, 11:30:27 am »
Joe_L:

The tape on the eye does suck!  I tried it and because I toss and turn a lot, it was constantly waking me up.  In search of a better way to close my eye at night, I devised a comfortable eye-patch for sleeping and I urge you to give it a try.

Get a wide stretch hairband from the drugstore--the cheapest ones are the best.  Put it around your head so that it covers your bad eye.  Then put a piece of folded soft cotton gauze or clean cloth on top of your eye.  Your eye will stay closed and it will be protected from middle of the night scratches or pokes.  The hairband headband comfortably stays in place too.

It's goofy, but it's been a life-saver for me.  It will keep the ointment in your eye too.

Be well,
Mimispree

2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

NotTheSame

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Re: Any good news on this site?
« Reply #19 on: February 06, 2015, 11:07:44 am »
Feline, as mentioned above you may not want to go down the permanent route unless necessary. I went with a temporary tarsorrhaphy and luckily after a few weeks I was able to remove it as my eye can close when laying down. Still no blinking though. I was fitted with a soft contact lens though to help with the dryness (even though my eye is numb I can't even feel it being dry).

feline

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Re: Any good news on this site?
« Reply #20 on: February 06, 2015, 03:07:02 pm »
Well it is a temporary permanent tarrsoplasty eye  does blink when I think about it has a 4mm gap from closing all the way since I wear glasses I did not know I can still use a  lens is this true?
Feline
Walnut size AN removed on June 30 2014 at Stanford with Dr Chang and Dr Blevins facial paralysis, no blink ,no hearing but otherwise feel good otherwise

mr. neurinom

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Re: Any good news on this site?
« Reply #21 on: February 11, 2015, 04:32:22 pm »
Hello

I've had my AN surgery when I was 25. Tumor on the left side with the size of 4,2 x 3,1 cm. Kind of big for my young age but luckily I've survived the surgery and overcome most of post-treatment issues etc. Currently I'm 13 months after my AN surgery but still with facial paralysis (my facial nerve is intact). I see some small improvements (for example I can hold air in my mouth and inflate my cheeks) but I can't make any movement on the left side. I still have 3 mm gap when I try to close my eye.  Few months ago I've started to feel twitches here and there. Now I can feel them almost every day. My doctors said that it will take 12 months to recover well ...

My doctors also said that it is very important to start with face rehabilitation ASAP which I did. Face massage, ele. stimulation, acupuncture. (face massage with ele. stimulation on daily basis) etc. But as I'm reading more and more on this forum many of you did the opposite. No face training for 6 or even 12 months after the surgery. My question is. Was I doing it right ? How come that some doctors are saying you should start with rehabilitations right after and some of them that you should wait some time ? How did/are you managing your face paralysis ? (I mean face rehabs etc.) Currently I'm having face rehabs 3 x a week and my first skype session (I'm from central Europe) with Jackie Diels.
thank your for your answers and heads up !

Mimispree

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Re: Any good news on this site?
« Reply #22 on: February 11, 2015, 05:58:17 pm »
Wow, Mr. Neuronom, thank you for this subject!  I have been wondering whether or not Jackie Diels did Skype sessions, so now I'm so excited that "Yes" she does.

As far as when to start rehabilitation, I'll be eagerly reading the responses to your posts.  I have read that you have to wait until there is some tingling, or ability to do something with your face. 

Can you get the electric stimulation machine for home use because I live in a very remote place?

Thank you again and the best of luck on your recovery.
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Unjaded

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Re: Any good news on this site?
« Reply #23 on: February 12, 2015, 09:47:05 pm »
My surgery was November 27, 2012.  My facial nerve was severed during the surgery.  I'm happy to say that the nerve regenerated and I began having movement October 31, 2013,  It's slow, slow, progress with facial movement and many times it seems like nothing is happening but even if you can't see improvement that doesn't mean it isn't happening.  By May of 2014 my face looked completely normal at rest.

I think some are reluctant to post "good" stories because the rate of healing and improvement is so varied and they may feel that it will dishearten those whose improvement isn't as rapid.  It's all just a giant waiting game.  I'm just past 26 months post surgery and I still have a crooked smile and occasional eye issues.  I'm not back to the way I was before the AN and likely will never be, but  I take what I can get and tell myself everyday that it could have been so much worse.  Just keep plugging along and you will get better.....it may not be the level of better you want, but you'll adjust and live a great life anyway  ;D

BTW: my physical therapist says the single best thing I can do to get continued improvement is stretch my facial muscles and keep them moving so they don't atrophy from lack of use.

Joe_L

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Re: Any good news on this site?
« Reply #24 on: February 28, 2015, 07:48:52 pm »
Neurinom, I have been seeing improvements for a couple months on my facial paralysis, and I have a smoothie with protein powder (vegan, organic) almost every day.  Maybe it helps.
5/29/2013 4.8 cm retrosigmoid tumor debulk (Dr. Maurer-Rochester, NY)
4/29/2014 retrosigmoid surgery to fenestrate cyst (Maurer)
5/23/2014 translab removed tumor and cyst grown to around 6.5 cm (Friedman/Giannotta)