Author Topic: Questions ...Always Questions  (Read 4658 times)

Soundy

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Questions ...Always Questions
« on: October 28, 2008, 08:10:11 pm »
I had some mild (although at the time seems extreme) facial issues...
Dry eyes ,droop to mouth , drooling ,tingly to numb face , eye that would close without
permission or refuse to close , and when not dry my eye would run... not just a few tears
but a river ...and the ever popular the metal mouth taste  ....

Most all has resolved with only enough left for me to notice... nothing usually visible to others...
but I am noticing that with my increase in headaches that when a headache is active , some of
these things come back... mostly the metal taste and facial numbness...

I took a straight pin today and was showing my mom the extent of the numbness by sticking my face ...
even closed my eyes and let my son poke as my mom said I knew when it was coming and so didn't flinch ...

my right ear is numb and I could add another hole in it if I wanted to... pinched it with pliers to prove to
husband that it didn't hurt... he isn't concerned as everything looks right ... says I am making too much of it ...
I rather nip anything in the bud if something is going wrong ...

My thoughts and that of my PCP is that there is some swelling going on but I have not been able to
get my appointment on November 19th moved up... my worry is that repeated swelling will cause
permanent problems ...

I guess I don't have questions ...just thinking in type... I am having a hard enough time getting help
due to insurance and want to prevent anything that will require additional treatment and for past several
months have not been able to get anything done ...

Been not saying anything about this because compared to many of you it is so minor ...

my vent is done ...just frustrated and bit my tongue too many times today and my face has been leaking
as my eye runneth over...

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

4cm in Pacific Northwest

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Re: Questions ...Always Questions
« Reply #1 on: October 28, 2008, 10:13:18 pm »
Ok the leting the family make a pin cushion out for your face is freaking me out-  Soundy.  Pliers as earrings- now that IS a fashion statement…

Get someone to observe what side of your face you are sleeping on- when on your side at night?

What happens when you apply 20 minutes of heat (not too hot) to that numb part of the face?

What is your daily caffeine intake?

What quantity of vitamin B12 are you taking daily?

If you can give us some more information maybe we can help look up some answers for you.

(My weird face thing today is that my Bells Palsy affected side of my face has been SOOH itchy all day- and not the other side…???)

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

jazzfunkanne

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Re: Questions ...Always Questions
« Reply #2 on: October 29, 2008, 03:12:45 am »
Hi how far are you post op, my face is still numb and am coming up for 2 years post op, i think if you lie on it at night it can become number i found this.
over 4.5cm AN removed dec 06

Soundy

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Re: Questions ...Always Questions
« Reply #3 on: October 29, 2008, 05:03:25 am »
I am 16 months out

very little caffeine and most days none

I sleep on my back with head cradled in soft pillows because if I lay flat or on side I get
a headache... this gives me a back ache but that is easier to deal with than a headache

Heat or cold does not seem to change it either way...

I do take vitamin B12 liquid under the tongue will have to go see what strength it is ...it is what
lupus doctor put me on

The facial numbness is always there but is worse as is everything else when I have a headache and
just figure somehow they are related...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

jazzfunkanne

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Re: Questions ...Always Questions
« Reply #4 on: October 29, 2008, 05:45:40 am »
when was your last mri, try and get a apt with your consultant to put your mind at rest, take carex
over 4.5cm AN removed dec 06

rsteph

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Re: Questions ...Always Questions
« Reply #5 on: October 29, 2008, 09:23:27 am »
I am 2.5 months post op. Facial nerve intact. Rt sided facial paralysis, eye weigtht w/ no blinking problems.  What effect does caffeine and Vit B-12 have on recovery?  I do drink 3-4 cups coffee a day and a glass of vino in the evening.  I can feel my face and have tingling.  Any advice would be appreciated.
3.7 cm AN Translab Aug 08' 100 percent removal UT Southwestern - CSF leak, Bacterial Meningitus. Rt side Facial Paralysis.  Partial facial movement returned 11 months post op.  Still healing

CROOKEDSMILE

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Re: Questions ...Always Questions
« Reply #6 on: October 29, 2008, 01:00:59 pm »
rsteph,
Hi I also have facial paralysis. I get Vit. B12 injections monthly. This is believed by some to assist in nerve regeneration which is what we need of the facial nerve. So any little bit helps! As far as cafeine...I'm not sure if it affects healing or not other than to say that it is a vasoconstrictor and may impede circulation. That is why many will drink coffee when they have a throbbing headache. The headache is from the dilation of vessels in the head causing the throb and the caffeine in the coffee constricts those vessels hence curing the ache. I would imagine that we need all of the bloodflow that we can get to the facial nerve while it is healing and need to give it any chance that we can so I would limit my intake somewhat if I were a heavy coffee drinking but wouldn't think that you would have to cut it out all together. Just my take on it....you will need to ask your doctor. The wine would be okay in moderation....great for relaxation and red wine good for the heart/vessels.
Angie

4cm in Pacific Northwest

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Re: Questions ...Always Questions
« Reply #7 on: October 29, 2008, 02:57:42 pm »
Here is a link on the vitamin
http://www.bellspalsy.ws/treatment2.htm

Caffeine
http://faculty.washington.edu/chudler/caff.html

I am not sure how “scientifically accurate� this advise here is but it talks about caffeine
http://www.naturalstandard.com/monographs/conditions/condition-bellspalsy.asp

This book talks about caffeine and the facial nerve
http://books.google.com/books?ct=result&id=5hcR9EZEfJQC&dq=facial+nerve+caffeine&pg=PP1&lpg=PP1&sig=ACfU3U2Vvr23u4XpUAGjtyyPG2tBN6wdKw&q=caffeine

It is my understanding that too much caffeine can also interfere with the proper absorption of the B12 vitamin.

I also read about reducing caffeine intake on the Acoustic Neuroma Association Canada (ANAC) website- however now they do not have that link and you have to order the facial nerve booklet: “The Facial Nerve: Possible Damage and Rehabilitation�
http://www.anac.ca/links.html

DHM
(Librarian wanna-be  :D ;) )

Post -post modification here
re "scientifically accurate?"... here are their contributors so perhaps it IS scientific...
http://www.naturalstandard.com/
go to "about us" ...they are with the University of Kansas Medical Center in the Program of Integrative Medicine

« Last Edit: October 29, 2008, 03:01:51 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Soundy

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Re: Questions ...Always Questions
« Reply #8 on: October 30, 2008, 08:36:05 pm »
I used to chug a Dr Pepper to help get a migraine under control ...sometimes the caffeine
was enough... have went decaffeinated in an effort to see if headaches were cause by the
caffeine or rebound from going a period of time without ... even decaffeinated I still get the
headaches and so it seems to make no difference with me if I have it or not...

I tried to take a nap laying on my right side but started getting a headache before I could see if
it was going to make facial problems worse... not as extreme as my pin cushion test ... and didn't
learn much except I am still gonna be a back sleeper for now
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery