Author Topic: Hoping this is just nervousnesss and not nerve  (Read 3397 times)

stoneaxe

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Hoping this is just nervousnesss and not nerve
« on: April 07, 2009, 08:47:53 pm »
Recently (last month or so) I've been experiencing same strange feelings in my face on the AN side. It started as a feeling like I had been sleeping on that side of my face....not quite numbness or pins and needles....but just a slight sensation. I've also been noticing that it feels like the outside corner of my eye is pulling and it seems to tear up without reason occasionally. Now for the last week (this may be completely unrelated) when I bite down I get pain in my jaw on that side. It also seems to come and go. I had to reschedule my MRI so I won't know for a bit exactly what is happening but when they looked at the last films one of the comments made was that the tumor was now close to the facial nerve. Do these sound like typical symptoms to you folks that have had facial problems?

My current understanding is that if it has grown close to the facial nerve that further radio-surgery would be ruled out because they couldn't do it without killing the facial nerve.

I hope I'm just getting nervous but I have a bad feeling about what is going to be found on this MRI. The facial issue isn't the only indicator/symptom that things may be going on in there that aren't good
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Sue

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Re: Hoping this is just nervousnesss and not nerve
« Reply #1 on: April 07, 2009, 08:56:03 pm »
Once that facial nerve gets messed with, all sorts of sensations can occur.  Mine started out as a noticeable numb spot right beside my ear.  Then it quickly spread out from there.  But, even as we speak, I have nervy things around my lips, and nose.  I'm guessing it's the nervy thing, but always wise to ask the dr.

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
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Kaybo

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Re: Hoping this is just nervousnesss and not nerve
« Reply #2 on: April 07, 2009, 08:58:43 pm »
Stoneaxe~
Let me get this straight because I think I missed something - I thought that you had already had treatment for your AN - I am looking at your signature and it sounds like you did, but now it is growing again??  Is that correct?

K ???
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)
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stoneaxe

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Re: Hoping this is just nervousnesss and not nerve
« Reply #3 on: April 07, 2009, 10:23:28 pm »
K,

I had radio-surgery (proton beam) 5 years ago. Last march I had an MRI that showed growth to 11mm...I had previously been at 6mm post treatment. Another in September confirmed the growth but showed no additional change. When the growth was first noticed was when it was mentioned that it had gotten close to the facial nerve. I told myself I wasn't going to worrry about it until we see what this next MRI shows but these symptoms have started creeping in. I'm calling tomorow to get the MRI rescheduled. The last couple of months I've felt and heard (tinnitus) some changes but wasn't sure if it was just due to a combination of headcolds and low pressure systems (both of which can mess me up) and wasn't too concerned. The facial issues are something completey new though that I've never experienced before. I guess I knew the numbness and the eye were symptoms but was unsure of the jaw pain.

Bob
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

sgerrard

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Re: Hoping this is just nervousnesss and not nerve
« Reply #4 on: April 07, 2009, 11:37:38 pm »
Grrr. I sure hope it is not a growing AN messing with your facial nerve, Bob. I thought the facial nerve was supposed to be fairly resistant to radiation damage? I also wonder if it something that could be smacked back down with steroids.

Don't let it eat you up while you wait to find out what is going on. Go do some more paddleboarding.  8)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

mk

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Re: Hoping this is just nervousnesss and not nerve
« Reply #5 on: April 08, 2009, 08:35:53 am »
Bob,

what you are describing sounds to me more like trigeminal nerve rather than facial nerve issues. Like Steve said, the facial nerve is pretty resilient to the pressure by the AN, but it is not uncommon for ANs to start pressing on the trigeminal nerve, causing numbness, odd sensations, altered sensation to the cornea (which can lead to dry eye) and/or pain. Having said that, I think it is a good idea to schedule your MRI earlier, to figure out if these new symptoms are because of new growth, or because of inflammation.
I was also feeling some weird sensations these last few days, and it just happened that my MRI was scheduled at the same time. I don't see any growth, so it is probably due to inflammation (or simply stress, as I was so stressed out). I found that high dose of ibuprophene and warm compresses to increase the blood flow help. If inflammation is the cause of all this, then a short course of steroids might help too.
I hope that your symptoms are simply due to stress and they will disappear soon.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

cindyj

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Re: Hoping this is just nervousnesss and not nerve
« Reply #6 on: April 08, 2009, 12:25:41 pm »
Hey, Bob - sorry to hear you're having some odd things going on.  I did have some jaw pain and tooth pain prior to my surgery.  I was told it probably wasn't related to the AN, however, it is gone now...

As Steve suggested, try not to worry too much - we know what a great attitude you have and I'm sure you'll use that attitude now.

Let us know what you discover,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

stoneaxe

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Re: Hoping this is just nervousnesss and not nerve
« Reply #7 on: April 08, 2009, 07:57:04 pm »
Thanks for the replies all.

MRI scheduled for tomorrow morning. Should know what the little bugger has been up to shortly.

The jaw pain has been explained...I need to have a super erupted wisdom tooth extracted (saw my dentist today for a cleaning and he took x-rays). Relieved that its unrelated.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Kaybo

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Re: Hoping this is just nervousnesss and not nerve
« Reply #8 on: April 08, 2009, 08:42:01 pm »
whew...that's good...in a way... ;)

K
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!

stoneaxe

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Re: Hoping this is just nervousnesss and not nerve
« Reply #9 on: April 08, 2009, 09:38:55 pm »
LOL....yeah...who would have thought that being told you need a wisdom tooth pulled would ever be "good news"... :P
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Kaybo

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Re: Hoping this is just nervousnesss and not nerve
« Reply #10 on: April 09, 2009, 07:24:57 am »
I just found out that my oldest daughter doesn't have ANY wisdom teeth (but she is smart!) - all I could think was, "YAY! no money for them babies to be taken out...& no pain for her!" ;)

K
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!

MissMolly

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Re: Hoping this is just nervousnesss and not nerve
« Reply #11 on: April 09, 2009, 08:56:06 am »
Hey Bob,

I have been experiencing the tearing and 'heavy' feeling on the left side of my face (AN side) as well.  I'm still new at this, but I can guess that its AN related.  My tumor is roughly the same side as yours.  Symptoms can be so confusing!

Let us know how the MRI turns out.

Miss Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.