Author Topic: TRIGEMINAL NERVE  (Read 9597 times)

Windsong

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TRIGEMINAL NERVE
« on: October 02, 2006, 08:08:27 pm »
Hi,

I've been scratching my head trying to figure out why anything regarding the trigeminal nerve always seems to come up with trigeminal neuralgia along withthe word "pain" and ways it can be treated plus all sorts of things connected with pain etc.....

I am now trying to find out why and what and how etc. this trigeminal nerve causes symptoms of ANY kind.....
so here's the first site i found that explains things about the trigeminal....

i figure one heck of a lot of symptoms aner's experience might be connected to this trigeminal "nerve"

and i personally do not feel humoungous pains are necessarily indicative of a trigeminal nerve problem...

Hopefully, some of us here have had some answers about this trigeminal thing.

http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm

Windsong
« Last Edit: October 02, 2006, 08:14:56 pm by Windsong »

mellowrama

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Re: TRIGEMINAL NERVE
« Reply #1 on: October 03, 2006, 06:45:23 am »
Hello Windsong,

Thanks for the information

Iit is a puzzle to me too, as I have many symptoms of trigeminal nerve being affected, but not the pain, whew!  The exact areas mentioned on the website (you posted) have numbness or tingling on one side of my head.

In fact, one of my docs recommended surgery over radiation because he was concerned that that nerve mignt be affected in the wrong way...which I never understood and no other doc had the same concern.

I guess what I really want to know is if the pain associated with TN should be anticipated next with these type symptoms.
melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

jamie

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Re: TRIGEMINAL NERVE
« Reply #2 on: October 03, 2006, 11:35:54 am »
i figure one heck of a lot of symptoms aner's experience might be connected to this trigeminal "nerve"

Here's a little more info from another site....

Quote
Trigeminal neuralgia pain caused by a lesion, such as a tumor, is referred to as secondary trigeminal neuralgia. A tumor that severely compresses or distorts the trigeminal nerve may cause facial numbness, weakness of chewing muscles, and/or constant aching pain (also see Trigeminal Neuropathy or Post-Traumatic Trigeminal Neuralgia).
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Battyp

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Re: TRIGEMINAL NERVE
« Reply #3 on: October 04, 2006, 05:06:31 am »
Thanks for the info, helpful yet depressing  LOL   ;D

Windsong

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Re: TRIGEMINAL NERVE
« Reply #4 on: October 04, 2006, 10:10:14 am »
Thanks for the responses! :)

Melinda, now I know I am not alone lol....one can go nuts with the episodic tingling, numbness, weird toothaches and etc.....

Jamie, what a marvellous site you posted. Beautifully designed, easy to read, with great graphics. Also it reminded me of of my own time at U of M taking some grad courses. Kudos to the U of M section that created that website! Also it was interesting to read about Dr. Kaufmann and his background what with Gk being offered in Winnipeg too.

Battyprincess, ah I am an optimist lol.... rather than depressing, the info gave me answers lol... i like to know the what and why as hate second guessing things. I suppose too, since I had radiation and they use that for trigeminal pain, I like to hang onto the thought that maybe my rads will kill any symptoms I have of trigeminal aggravation lol....

All the best to everyone,
Windsong
(who has some numbness in her cheek today lol)

marystro

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Re: TRIGEMINAL NERVE
« Reply #5 on: October 04, 2006, 02:53:55 pm »
Jamie, Great website.

Tirgeminal nerve pain is no fun!  I had that for a little over a week right before CK.  Praying everyday that it does not come back nor happens to anyone else!

Windsong, I am like you - the ultimate optimist!  That's the only way I can handle negative stuffs...

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Kilroy1976

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Re: TRIGEMINAL NERVE
« Reply #6 on: November 08, 2006, 10:21:30 pm »
Ok, I have really tried to find answers to these questions on my own so as to avoid asking them here, but here goes...

1. How does the trigeminal nerve fit in with what we have (the AN and the radiation or surgery)?
2. Is the facial nerve one of the branches of the trigeminal nerve or are they two totally distinct monsters?
3. If they are separate, how would an AN/radiation/surgery come to affect the trigeminal nerve?

I have something that feels very similar to what they call atypical trigeminal neuralgia. The constant dull ache and burn all day, every day. It's bearable, even more so with Neurontin. I have also had several instances of what sounds exactly like typical trigeminal neuralgia. I don't know how to describe those; they were like being shot in the face with a burning, electrified bullet. I mean UNHOLY painful. As long as the "shots" don't come back, I can deal with the aches and burns, so I'm asking these questions more out of curiousity than anything. Help?
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

ppearl214

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Re: TRIGEMINAL NERVE
« Reply #7 on: November 09, 2006, 09:33:19 pm »
I have to admit, I have not had facial "pain", but have had intermittent numbness. I do know my trigem took a small hit of radiation as I ran into dry eye a few months post CK, but it only lasted about a month (knock on wood it stays that way).

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

marystro

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Re: TRIGEMINAL NERVE
« Reply #8 on: November 14, 2006, 10:17:37 am »
I asked my doctor about Trigeminal Neuralgia.  Here's his response which has helped me tremendously in subsiding my fear.  I hope he doesn't mind me posting it here.  I think it will help many of us.

"We have had patients with facial pain on the side of their acoustic neuromas both before and after treatment.  The primary issue here is whether your pain is mild, or if there represents true trigeminal neuralgia.  It is not uncommon for the acoustic neuromas to your take the trigeminal nerve as they are growing.  This can cause intermittent facial pain, and in rare instances can cause actual trigeminal neuralgia.  True trigeminal neuralgia is severe pain rated 10 out of 10 on a pain scale, and often prevents the patient from eating.  This is not the typical pain that acoustic neuroma patients usually experience.  After radiosurgical treatment, as the tumor undergoes inflammation and dies, the trigeminal nerve may also be irritated resulting in occasional pain.  Again this is typically different than true trigeminal neuralgia pain.  In the case of the intermittent facial pain resulting from tumor inflammation, that usually settles down once the tumor dies completely from the radiosurgical treatment.  In my expense, I've not had a patient develop true trigeminal neuralgia after radiosurgery treatment.  I have had occasional patients developed the more milder form of intermittent facial pain but this is typically been self-limiting and usually resolves over time."

My understanding is the inflammation of the tumor from radiation lasts anywhere between 3 months to a year.  Most of my facial pains are gone.  I still have some occasional residual mild pain near my nose but very tolerable.  And most importantly I CAN EAT!!!

So, you see, let's keep thinking positively and like Phyl's mom said "yes, this, too, shall pass"... and it will!  Look at the results from Phyl and many others!!
« Last Edit: November 15, 2006, 12:24:57 pm by marystro »
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Kilroy1976

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Re: TRIGEMINAL NERVE
« Reply #9 on: November 14, 2006, 10:22:03 pm »
Very kind of you to post what your doctor had to say. It's reassuring to read that this pain is a temporary condition that usually resolves itself. :)

I also wonder if irritation to the facial nerve, as may result from a tumor or from radiation or surgery, couldn't cause a similar sensation to that experienced by TN sufferers. I've been dealing with sporadic "shots" of sciatic nerve pain for about 15 years, and that is about the closest I've ever felt to the "shots" that went through my face. To over-simplify, what I'm getting at is "a nerve is a nerve is a nerve." If pain from the sciatic nerve in the back feels similar to pain from the facial nerve, then it seems reasonable that, since both the facial and trigeminal nerves control facial sensation, pain from the facial nerve would be even more similar to pain from the trigeminal nerve. Discuss.  ;D
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

marystro

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Re: TRIGEMINAL NERVE
« Reply #10 on: November 15, 2006, 12:34:04 pm »
The doctors on the CK forum said that they usually do not see neuropathic pain from radiation of nerves.  If they see anything, it is usually loss of nerve function.  However, neuropathic pain is still possible.

I agree with you that "a nerve is a nerve is a nerve".  I tell my son that it's like your funny bone (actually a nerve) on your elbow which is the closest I can describe nerve pain to an 8-year old.  It is also like nerve that is exposed when you have gum recession.  But I think the facial nerve pain is sharper and more contained.
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Kilroy1976

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Re: TRIGEMINAL NERVE
« Reply #11 on: November 15, 2006, 02:36:06 pm »
Yes, the facial pain is definitely sharper and more concentrated than the sciatic pain, but I can kind of tell that deep down they're the same "type" of pain. Heh, I don't know about that "funny bone" comment; there's very little that's "funny" about real nerve pain. ;)
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

 


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