ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: mrgarlic on July 02, 2008, 10:44:40 pm
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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
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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
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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
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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
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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
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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
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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
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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?????
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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
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We definitely need spell check here!
I'm forever reviewing my posts before I post them ::)
Jan
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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
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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
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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
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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
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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
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Thanks for the definition, Jim.
In addition to needing spell check on this forum, I think we also need a thesaurus :D
I didn't think you were "dissing" me or anything, but I truly wasn't certain what inveterate meant.
Jan
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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
Heck, Jim, I didn't even know that one. ::) ;) And, btw, you BOTH are catching up to me in post count! Sheesh!
Now back to topic
Phyl
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Hi Larry-
Off topic, but I just noticed that you are also a lung cancer survivor and that caught my attention. First of all - huge congratulations to you on beating the odds and continuing to live a good life with only one lung. My wonderful, amazing mother is also a lung cancer survivor, although she managed to get out with only 1/3 of her lung gone. You'd never know it today, and she is my absolute hero.
I hope you find a "fix" for the nerve firing - you've definitely gone through enough!
Debbi
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Maybe Jan thought you meant Invertebrate ;)
Tammy
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Maybe Jan thought you meant Invertebrate ;)
Actually that was among my thoughts ;D
I'm wondering if I'm considered "inveterate" what we'd call Phyl ???
She's 1,000+ posts ahead of me and if I'm "confirmed or habitual", what does that make her?
Be nice now :D
Jan
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I'm wondering if I'm considered "inveterate" what we'd call Phyl ???
She's 1,000+ posts ahead of me and if I'm "confirmed or habitual", what does that make her?
Jan
!ncorrigible? Or, perhaps just dedicated, like you. :)
Jim being nice
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Jim (being nice) -
I'm actually familiar with the word incorrigible - in The Sound of Music one of the boys tells Maria he's incorrigible and then asks her what that means.
I'm a little disappointed with your response. I thought for sure you'd come up with a word that I've never heard before :D
I also look forward to reading your posts - not only because they are always insightful and well-thought out, but also because they help me expand my vocabulary ;D
Jan (being nice also)
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RE
This is a dumb question, however, There are many different choices on this forum, but no spellcheck? [/b] [/color]
I just compose everything in “word� ,first, and then run the grammar and spell check….From there I just cut–and-paste it into the post box… Sometimes I forget to do this and then my spelling skills (or lack of) get revealed to the ANA readers (gasp! :o ;) ;D )
Daisy Head Mazy
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I'm actually familiar with the word incorrigible - in The Sound of Music one of the boys tells Maria he's incorrigible and then asks her what that means.
Well, at least you didn't stop with Do-Re-Mi. ;)
I'm a little disappointed with your response. I thought for sure you'd come up with a word that I've never heard before :D
Sorry. My intent isn't to confound readers with esoteric words. Oops. I think I just did it again. :-[
I also look forward to reading your posts - not only because they are always insightful and well-thought out, but also because they help me expand my vocabulary ;D
Thanks for the compliment. You're very kind as well as droll and inveterate. ;)
I think we're all nice. Well, most of the time.
Jim
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I think we're all nice. Well, most of the time.
Jim
Speak for yourself... I'm not nice! ;D
I know the bloke has some adjectives to describe me... as well as some of my foreign customers. Too bad I can't post them here.
Ok, so this thread is going back on topic? ;)
Phyl
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Hi Larry
The first symptom-- and only symptom --I had before my AN was discovered was irritation of my trigeminal. Specifically electric shocks in my cheek, vague numbness in my chin and a sensation of wetness on the outer corner of my lips.
I think an MRI is in order. Could be scar tissue irritating the nerve and not AN regrowth or could be trigeminal neurlagia or something totally benign and will go away on it's own.
Tell your doctor and they can check it out!
Good Luck!!!!
Amy
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Greetings again. It has been over a month since last post. WOW, what a month ! I finally saw a neuroligist and was diagnosed with Trigeminal Neuraligia. She then made a big mistake. She put me on Tegretal and gave me a schedule from 200mg once a day to 1200mg twice a day and then left town for a vacation. Within three days my pain quit and I had other questions re the medication. Surprise! Her office had no other Dr to talk to and no way to contact her until she returns. No fax, no messages alowed period! I was advised to write her a letter. BULLCRAP ! Sorry, but I was angry. I went searching and found a TN specialist right here in Portland. I still have not had an MRI but it is coming soon. This past week the pain started again. This time very unusual. Like a sharp poke in the top of my head. It lasted for an hour, stopped and never returned ( yet ). My right side face is still all numb.My friends and family just shake their heads and wonder whats next. AN and TN and lung cancer survivor. All I know for sure is that God loves me and this too shall pass. Thanks for caring,-,-,-,-,-,=- Larry
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Hi Larry,
I may be the resident trigeminal forumite. I experienced TN as a symptom of the AN compressing the trigeminal nerve. In fact, my AN was really a TN since it originated from the trigeminal nerve and not the acoustic nerve. I am very familiar with that pain and I agree that it is debilitating. At almost 4 weeks post-op I have the facial numbness and heavy feeling but no pain yet. It is one of my biggest fears that the pain will return. Hopefully not, but here's what I've learned. Function returns much slower to sensory nerves than to muscular nerves so the trigeminal takes a LONG time to heal. And the trigeminal is an extremely finicky nerve, hence the misfiring and pain. I know they have drugs and other theories out there--after googling extensively I found out that marijuana is an affective analgesic to TN. Of course I'm not advocating illegal drug use, just reporting on the information that I have gleaned. Good luck.
Wishing you only good things and NO PAIN.
Best,
Marci
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Too funny Marci,
My 19 yr old was just telling me the other day that marijuana would to the trick for me! In Canada you can get a prescription for marijuana. Yeah, I'll just go down to the area where I work because I call it "crack alley and hooker ville" and see if I can get a free sample before I bug the Dr for a script. I do not smoke so smoking marijuana would be quite interesting.
Just wondering if my 19 could give me a tutorial :o
Anne Marie
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Hi Anne Marie,
Your 19 year-old and my 20 year-old can probably tell us way more than we need to know. But hey, you DO live in Canada. ;D
Marci
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Marci,
Yes I do! In between Toronto and Niagara Falls. Have you ever been this way?
Anne Marie
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Well, we lived in Montreal for a long time and made a few trips to Toronto and to Niagara Falls. Now live west of Cleveland, in Oberlin, a very sweet (and strange) college town. It's not a place I would ever have imagined I myself living, having spent most of my life in cities, Philadelphia, Rochester, Montreal.
Will you go to the ANA forum next summer in Chicago?
Marci
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Pardon my ignorance if I am way wrong, but can't you get medicinal cannabis in tablet form so you don't have to smoke it?
Sara
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I think you can but you can also smoke it through a vaporizer so that you don't hurt your lungs. I have a friend with MS who does this, and gets relief from many of her symptoms.
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Larry-Noticed your title "Fire in the face" and had to check and respond. I have had TN for the last year. Mine is from radiation damage after treating my AN. I am on 600 MG of Neurontin daily. It controls but weather (cold and rain) stress- being overworked- (who isn't) and certain spicy foods can bring mine on. Mine feels like you just got out of the dentist office. Never rally goes away completely. I sure would get an MRI too be on the safe side. I was told by my neurologist that it can get worse-Geez I hope not-before medication it was the worse pain I have ever experienced in my life. Good Luck on your outcome and choices. Just letting you know other's suffer from this pain also.
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Hi Marci,
I'm hoping and praying about Chicago next Aug. My husband and I are going on a 10 day Southern Caribbean cruise next July and than we are spending 4 days in Florida to celebrate our 25th wedding anniversary. I have to see what the holiday schedule is like at work. I really want to come.
I too take Neurontin. I have a lot of issues with facial pain, earaches and headaches. I'm weaning off of 900mgs a day to 600mgs. Weight gain is a nasty side effect :'( But if I need the med's I need the med's. I've been on topamax and tegretol and so far the Neurontin has worked the best.
I agree with Dealy, when the weather is bad like it has been nothing helps. Actually I'm stressed out about my possible return to work. My employer isn't all that understanding and I find the Neurontin leaves my slightly confused and my short term memory took a nose dive. Scary when you work in the financial industry. I'm making an appointment to see my neurologist so she can refer my to a pain specialist. My family dr isn't helping and I guess that's because this is way out of his league.
I'm telling you Marci, if you are in pain.....I'm in pain,
Anne Marie
P.S. Something else we have in common :P
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Hi Anne Marie,
Being stressed about work (I am SO stressed about this) will only make it worse, I think. Can you transition back before you go full-time? That's my plan. Of course, I am terrified that once back I won't be able to do my job and all I have worked for will be for naught but I'm trying to not worry about that one in advance. I am trying to be patient and hoping that some of my AN issues resolve. I did wake up without pain this morning which is a first. Small victories!
I would love to meet you (it's destiny I fear) so maybe at some point we can do it even if you don't make it to Chicago. We are about 5 hours from Toronto so perhaps once we are both feeling well, we can meet halfway? Just a thought.
Hang tough Anne Marie, for some reason we are both meant to be here and to get through all the difficulties. You seem to have more than your share...
Marci