Author Topic: fire in my face  (Read 13771 times)

mrgarlic

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fire in my face
« on: July 02, 2008, 10:44:40 pm »
Greetings, My first time posting, I am four years out from surgery. I have watched this site for a while, but never had a reason to ask for help. For me, my tumor was removed by Dr Brackmann in Los Angeles in 2004 .I am now 67 years old. I have a weight in my eye and my smile is mostly gone but that is cosmetics and I am content with that. Now I have a new problem that is most intolerable. I am getting firey nerve spikes in my face. Kind of hard to describe but it feels hot and tingly?? It is a lot like electrical wires fireing shots. It only lasts for about 15 seconds and slowly goes away. I have been trying to determine what gets it going and I think it is narrowed down to standing up. It has happened at other times but mostly standing from a sitting position. I also have some constant pain mostly around the eye and worse around my temple. I would appreciate any thoughts on this. Thanks a bunch,,, Larry
I am not the person I used to be,
 I am becoming the pereson I am.

AN surgery 2004- Trigeminal Neuroma  surgery scheduled    Nov 2oth 2008

sgerrard

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Re: fire in my face
« Reply #1 on: July 03, 2008, 10:18:33 am »
I think this is the trigeminal nerve (the fifth cranial nerve), but I'm not sure about that. If it gets pinched, or something, it can cause the fire or needle like pain. You might search on the forum for other posts about this. Hope you find something...

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.

mrgarlic

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Re: fire in my face
« Reply #2 on: July 05, 2008, 09:16:32 pm »
Greetings Steve, I want to thank you but I don't like that word you used." trigeminal nerve "
However, you sure are on the money. I googled the nerve and I guess there is help out there. It can be as easy as massage or can lead to surgery. My biggest fear is the tumor growing back. They were not able to remove all of mine due to possible permanent damage to my facial nerve. I have another puzzle, I see that over 40 people on the forum read my post but only you responed. Is this nerve problem that rare or did my login name make people stand back :)  :)  :)   Thanks Steve,,     Larry
I am not the person I used to be,
 I am becoming the pereson I am.

AN surgery 2004- Trigeminal Neuroma  surgery scheduled    Nov 2oth 2008

leapyrtwins

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Re: fire in my face
« Reply #3 on: July 05, 2008, 10:05:38 pm »
Hi Larry  :)

I am one of those who read your post and didn't respond.  Sorry  :-[

The reason I didn't respond the first time was because I know absolutely nothing about the problem you are asking about.  I was hoping that some others would answer your post.  I'm glad that Steve responded and I'm sorry more of us didn't.

You say your biggest fear is your tumor growing back.   My tumor was completely removed and I was told my odds of regrowth were only 1 to 2%.  I'm not sure what the odds of regrowth are if a part of the tumor is left behind.  Do you know the odds? 

I would assume (although I generally try not to assume  :D ) that if regrowth was a big concern, your doctor would have had you do radiation on the part of the tumor that was left.  IMO if you didn't have to have radiation after your surgery, regrowth isn't a very big concern. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

TLC719

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Re: fire in my face
« Reply #4 on: July 06, 2008, 08:28:28 am »
mrgarlic,  I get that pain in my right side & don't know what to do about it.I also get eye pain&my pupil stays dilated for some reason.I  hope Steve will tell us what nerve is messed up there.My balance is terrible even though I had lots of therapy.I think it's got alot to do with my AN eye .  always,TLC
« Last Edit: July 06, 2008, 11:22:43 am by TLC719 »
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

Debbi

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Re: fire in my face
« Reply #5 on: July 06, 2008, 08:29:40 am »
Hi Lary-

Actually, I like your "handle" - McGarlic - catchy!

I don't have any experience with this, atlhough one thought that did occur is - is it possible that your facial nerve is trying to refire this long after surgery?  Have you contacted your surgeon, Brackman, to ask him?  

On the fear of tumor regrowth - I'm only two months post op, so haven't fully addressed that myself.  However, I did ask my surgeon, Golfinos, what the odds were since he had to leave a little bit of the tumor behind on my facial nerve - he said less than 5%, probably 2 or 3%.  It is his policy in these cases to follow the patient with annual MRIs for at least 5 years.  

I hope you get some more responses here, Larry.  in the meantime, if you haven't called HEI, certainly do so as they can probably help.  Let us know how you are doign, okay"?

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Karen

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Re: fire in my face
« Reply #6 on: July 06, 2008, 07:15:49 pm »
this is in reply to mrgarlic.  I had my surgery a little over 4 years ago.  My trigeminal nerve was damaged            so I don't have much feeling, just a constant uncomfortable achy, heavy feeling.  The only time it doesn't bother me is when I am asleep.  Have you had any relief or help for yours?  Karen
Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

mrgarlic

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Re: fire in my face
« Reply #7 on: July 06, 2008, 09:42:33 pm »
Greetings Karen, My eye was the only problem. At one year out they put in a gold weight and it works fairly well. A whole lot better than tapeing my eye shut every night. My right side of my face doesn't work so well but I am not concerned about that. My smile is now a smirk. BUT ! I am alive and happy. Now the nerve thing.There has been no pain since 2004. Now it is constant. Mostly around my eye socket. I can even live with that if necessary, but this nerve fireing business is deadly. The pain is short but very very sharp. I did e-mail Dr Brackmann and am waiting for an answer. This is a dumb question, however, There are many different choices on this forum, but no spellcheck?????
I am not the person I used to be,
 I am becoming the pereson I am.

AN surgery 2004- Trigeminal Neuroma  surgery scheduled    Nov 2oth 2008

sgerrard

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Re: fire in my face
« Reply #8 on: July 06, 2008, 09:46:33 pm »
There are many different choices on this forum, but no spellcheck?????

If you read more than a few posts, you will realize there must not be. Just blame the typos on your AN. :D

By the way, I use the Firefox browser, which has a spell check built into it that works when posting to the forum.

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.

leapyrtwins

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Re: fire in my face
« Reply #9 on: July 07, 2008, 07:07:37 am »
We definitely need spell check here!

I'm forever reviewing my posts before I post them  ::)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: fire in my face
« Reply #10 on: July 07, 2008, 01:41:07 pm »
Larry:

I feel a need to jump in here and offer an apology for not responding to your original post, which I did read, as I read almost every post as part of my assigned duties as a messageboard moderator.

Like our droll, inveterate poster, Jan and a few others, I didn't immediately respond to your message because I had nothing to offer you.  Now, sometimes that hasn't stopped me from posting anyway, but when it comes to more serious issues, such as the kind of nerve pain you're experiencing, I prefer not to post a reply unless I feel I can offer more than a greeting and some sympathy.  I would guess that you would rather receive replies that have some real information instead of just pleasantries or, worse yet, information/advice based on ignorance.   

I hope you'll realize that some AN related questions cannot always be easily answered long distance.  Although we may have one or two physicians as members, no one that posts here is going to offer any actual 'medical' advice.  Sometimes, doing a web search - as you did - is quicker and more productive when a specific medical question arises.  That you contacted your doctor is the obvious reaction to this flare-up of facial nerve pain you're experiencing and I trust you'll receive a useful answer and eventually, relief.

By way of explanation, Larry, most of the folks on this forum (and all the forums) are either AN 'veterans' or are in the process of undergoing or choosing treatment.  As you'll soon realize, they can be a valuable resource but they visit the forums on a voluntary basis and are not always immediately available.  Unfortunately, on occasion, some posts do get overlooked.  I try to check every new post but I miss a few...that's why we have multiple moderators.  I'm pleased to see that Steve was able to reply to you and you've received even more replies over the past few days (which is typical).  I'm confident you'll find them helpful, as most people do. 

We'll look forward to your update on this issue and whatever else you may have to contribute.  :)

Jim



« Last Edit: July 07, 2008, 03:08:04 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mrgarlic

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Re: fire in my face
« Reply #11 on: July 07, 2008, 07:17:58 pm »
Greetings to Jim and  " ALL "    I think I need to repair some unintended words. I wasn't complaining about lack of responce on my post. My first thoughts were that nobody has been through this nerve fireing and that it wasn't AN related. Secondly, I was showing a little humor with my login name. Thirdly, it was a holiday weekend. SO,,,, I am sorry for giving you all a guilt trip. That was not my intention.  - - - - - - - Nextly, don't you just love my grammer.:)  :)   Then I googled trigeminal neuralgia and really didn't see a connection to AN. The closest it comes is saying that the trigeminal neuralgia is sometimes caused by a damaged nerve. That would cover most every one on this forum. Now that I am on here seeking answers, I am the one feeling guilty. I had my surgery 4 1/2 years ago and I was in a position to help many others. I have also went through menieries disease and had surgery for it as well. I am also a lung cancer survivor. My cancer had a 12% chance of finding it oin time to survive. I have one lung. I didn't need any further treatment. That surgery was in 1999. I am living proff that there is a God that loves me and has more plans for my life.
                                                                                                  Thank you all    -    Larry
I am not the person I used to be,
 I am becoming the pereson I am.

AN surgery 2004- Trigeminal Neuroma  surgery scheduled    Nov 2oth 2008

mrgarlic

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Re: fire in my face
« Reply #12 on: July 07, 2008, 07:49:14 pm »
Greetings again, I made a tiny little mistake here. I "searched"   trigeminal neuralgia, but I did the search on the "facial issues" forum and came to the ( wrong ) conclusion that there are not many AN people with TN problems. I just searched at the "home page" and found many many more of us. Maybe this note will help others to find more answers. Thanks for all your patience.  Larry
I am not the person I used to be,
 I am becoming the pereson I am.

AN surgery 2004- Trigeminal Neuroma  surgery scheduled    Nov 2oth 2008

leapyrtwins

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Re: fire in my face
« Reply #13 on: July 07, 2008, 10:19:56 pm »
Larry -

no need to apologize for the guilt trip - I didn't think you were taking us on one  ;) 

Sounds like you've had a few ups and downs over the years, but it's wonderful to see you're a survivor.  God certainly does have more plans for you  :)

Jan, the droll inveterate poster

(since Jim's already told me what "droll" means, can anyone clue me in on "inveterate"?  :D LOL
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: fire in my face
« Reply #14 on: July 07, 2008, 10:42:01 pm »
Larry:

No apology needed.  You're an AN patient who has endured other serious medical problems and we're pleased to have you as a member.  I meant it when I stated that we look forward to your contributions.

Jan: inveterate is an adjective meaning 'confirmed' or 'habitual'.  I use it as a salute to your dedication to the boards shown by your high post count, generated by your response to almost every new post.  You are a very dependable poster and valuable member of these forums.  My use of the word 'inveterate' (as applied to you) meant nothing but respect and admiration.

Jim   

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.