ANA Discussion Forum
General Category => Inquiries => Topic started by: Melissa778 on November 20, 2008, 12:26:54 pm
-
I had my (almost) 2cm AN removed via translab in May, with a follow up GK a month ago to zap the reaminder from my facial nerve area. I have since had horrible dry eye, which is slowly gettign better. BUt I have developed a new issue.....HORRIBLE, EXCRUCIATING tooth pain on my AN side. I thought for sure thsi was a dental issue. I went to the dentist this morning and my teeth are 100% OK......What's the deal? Is this all nerve pain? I have also been getting pain in the middle of my cheek on my AN side.
Melissa
-
Melissa,
these sound like trigeminal nerve symptoms. Dry eye is due to reduced sensation of the cornea. The trigeminal nerve can be also responsible for pain and/or numbness in the face and scalp. The nerve may have taken a hit from the radiation. If ibuprophen cannot relieve the pain, may be you should ask your doctor to prescribe medication for this.
I hope you feel better soon.
Marianna
-
Hi there,
I can tell you first-hand that it's probably trigeminal issues--I have this all of the time to varying degrees. It definitely sucks but I am in search of a new doctor with expertise in nerve pain. I've tried a couple of drugs with no relief yet. But, I am determined to find a solution. Hopefully this will pass for both of us!
Be well,
Marci
-
WOW, my pain got to be excruciating Friday. I ended up in the ER as my AN doc is an hour and a half away from me. They gave me a quick shot of morphine and sent me on my merry way with a script for darvocet. My AN doc, bless his heart, called me at home all weekend to check up on me and called in a script for Tegretol. SO far the Tegretol seems to be helping and I've scaled back on the darvocet and ibuprofen. But, WOW...that pain was intense and horrible!!!! I have a follow up MRI today to be sure there isn't some swelling going on. Thanks for the input.
Melissa
-
Melissa!
I have NO feeling on my AN side but for a good while, I would have pain in my teeth on that side...I thought it very strange. Nothing as bad as what you are describing though. Don't have it anymore...sorry you are having to deal eith this!!
K
-
I too have had teeth pain. I have a CK doc that says there is no way this could be related to the AN. Nothing is when is comes to him. Can you tell why I am a confused mess right now? I hope that you can get some relief somehow, Melissa. Hang in
Sher
-
I too have the tooth pain and been to the dentist X3 and there is nothing wrong with my teeth, sometimes I just want to have the back ones pulled.
-
Hi Mellisa!
I have had this pain too and I think it is because of the trigeminal nerve. I don;t feel anything around my mouth, cheek and forehead in my AN side but the strangest to my dentist and me is that I feel a dull constant pain in the front teeth! Probably my pain is not as hard as yours but I have taken this state for normal.
I am so sorry you have to go through this. Did doctors say would it disappear?
Best and hope the pain is fading away!
Happy Thanksgiving!
Hrissy
-
I've heard that trigeminal neuralgia can bring people to their knees with the pain that can be sudden and shooting. I hope that the meds work okay for you and that this is a problem of the past. Nobody wants this one!
http://www.emedicinehealth.com/trigeminal_neuralgia_facial_nerve_pain/article_em.htm
Take care,
Sue in Vancouver USA
-
It's no fun. It was the one and only symptom that lead to my diagnosis. The pain and discomfort that I'm dealing with now is nothing compared with TN.
Marci
-
Was unable to get in to see the doc, he's now off for the next month. I did speak to him via phone and email and he has for the time beign prescribed Tegretol for the nerve pain and it is workign WONDERS. THe paid is gone, what little paid I do have occasionally I am able to subdue with Advil. WHEW! That was soem intense, horrible pain. I hope to never experience again!!
Melissa
-
SO glad to hear it's better. Mine was awful all weekend but is better today. Any side effects with Tegretol??
Thanks,
M
-
Hello all,
I am curious as to what this "tooth pain" feels like to all of you. My back tooth on the AN side feels like the nerve is exposed only at certain times. It is NOT constant but when I chew on that side it lets me know its there. If I steer clear of chewing, then there is no pain. My dentist said it could be a cracked tooth but cracks don't always show up on x-rays. Not sure if it is AN related though it is on the AN side and I have had no treatment, still watching and waiting. When I do get the pain, I see stars!!
Jackie
-
My side effects with the Tegretol are some mild drowsiness. But I seem to be tired everyday anyway :) It's a chewable tablet, which I dislike, but at least its working!! It's one of those that you gradually work your way to taking a full dose over a period of days. I am only up to taking about 1/2 a dose and I seem fine with it so doc says to stop here and jsut continue with amount that is working and not go any further.
The pain in my jaw and face has subsided, however....I do know what you are saying Jackie about the nerve feeling almost "exposed". I was seen by a dentist to completely rule out any dental issues, but I am still avoiding chewing on that side because it is somewhat sensitive.
Question for anyone else who has had trigeminal nerve pain......Was your pain at all triggered by sinus pain, pressue, and/or infection?? I have the WORST sinus infection and I'm wondering if that didn't trigger some sort of irritation? I am only congested on the AN side.
Melissa
-
Melissa-
Wow - this is weird. I have been having intermittent jaw pain for the last few months - saw the dentist a couple of months ago and he said there was nothing wrong. The pain escalated in the last few weeks and is so bad today that I could scream. I made another appointment with my dentist for tomorrow, and am taking percoset (which is only helping a little). Just read this post and now wonder if it is all nerve-related. It feels like there is a dagger in my lower jaw right now - yeow.
I have had a lot of "random" pain all over the right side of my head for months, and my face is very tender when I press on it. And now the "tooth" pain. I am now wondering if this is all trigeminal related? Is there any way to know for sure?
Melissa, I am so sorry that you've had to deal with this - but SO glad that you posted! I was starting to think that I was losing my mind and becoming a hypochondriac! Now, at least if the dentist can't find anything wrong tomorrow, I'll know where to look next. First time in my life I've ever hoped for a cavity or a root canal...
Debbi
-
WOW ladies welcome to MY world. Reading what all of you are going through makes me very emotional. I've been living with this for the last two years. I also get brutal headaches to make matters worse. I've been on Tegretol, Topamax and now I'm on Neurontin, Toradol and Tylenol 3's when I can't bear the pain(s) anymore pain. I also take Ativan to remain some what calm. Believe it or not but I had a root canal two years ago that was not necessary. Some days I cannot even apply face cream or blush. You can actually see that the left side of my face is swollen.
Sometimes I feel like someone has used the left side of my face as a punching bag and they have their fingers in my mouth trying to rip my cheek off. At times I feel like my cheek bone and eye socket are going to explode. Oh yeah the teeth feel heavy all the time, but when the jaw also starts to ache I literally hold my face. My sinuses are always a problem. Gosh I sound like a hypochondriac!!! Okay ladies, how does it feel to lift your eyebrows or to smile too much. I find putting mascara on to be tortuous, but a girl has to do what a girl has to do!
Oh, I'm so full of good cheer here. Sorry Ladies I had to add my two cents. Please keep a journal so you can keep your Drs updated. I really, really wish I was the only one going through this. Its kind of like when your babies are hurting and you want to take on their pain. It really is too bad the medical community isn't all that informed about our issues. My family doctor calls it idiopathic pain. Idiopathic, maybe because I'm a certifiable idiot ;D
Anne Marie
-
Hi Anne Marie,
Idiopathic my **s! It's the trigeminal nerve which has a mandibular branch that involves teeth, gums, and other parts of the mouth. It is NO picnic. I just hope and pray that it will get better over time. For now, it just changes; some days it's the tongue, other times it's the teeth and gums. Aside from being painful it is maddening. New doc on December 16. I am hoping he can help me. I'm sorry Anne Marie and Melissa and Debbi; we are having no fun!
Marci
-
Anne Marie-
I don't know how you deal with the constant pain. I wish I could give you - and everyone else with intractable pain - a big hug (gentle, of course.)
It is kind of weird to me to think that the pain I've been having might, in fact, be trigeminal neuralgia. It would explain a lot. And, in a strange way, it would make me feel like less of a baby.
This morning, I would have sworn that I had a tooth ache in one of my front teeth; now I would swear it is in one of my molars. Do you ladies experience this as well? I also have pain, fairly constant, right at the joint of my jaw, by my ear. I was really thinking it was TMJ, but the symptoms weren't quite right. I was diagnosed years ago with TMJ and have worn a night guard for about 10 years - but I never had pain on this side, always only on the left side.
Anne Marie, I haven't had the facial sensitivity to the degree that you have it. But, since I started to lose some of the numbness in my face, I've notices that if I press on my cheek, chin, temple, etc, on the right side, it feels sore - almost like it would feel it if were bruised. Does that sound familiar? Both heat and cold help to a degree, but nothing gets rid of it. I have the same sort of tender spots on the top of my head, on the right side.
What I am not sure of is how this can be related to the AN surgery? What I've read is that the trigeminal nerve is the 5th nerve, which is a ways away from the 8th - or at least I think it is.
Melissa, again, thank you for this post - it is such a relief to be able to talk about this.
Sue, the link you shared was great - thanks.
Marci, I am getting the impression that I should see a neurologist for this - is that the type of doc you see?
Debbi, hurting in NJ
-
Hey Marci,
Did you read my signature?
Anne Marie
-
Hi,
Anne Marie, that's why I said we were having no fun! Debbi, what you describe is exactly what is going on with me. There are sore spots (at least it's feeling!) and itinerant pain. And remember, those cranial nerves are not really far from each other. Yes, the doctor I'm going to is a neurologist and yes, this is nerve pain. Could just be the nerves regenerating but I wish they would regenerate quietly. I also feel like the inside of my mouth (right side) is swollen, though it isn't, and so am having lots of problems speaking clearly. Massage therapy is keeping me sane until I can find drugs that work without awful side effects. I'm about fed up but I'm trying to tough it out. On the other hand, I'm greedy: I went through the surgery and recovery, so now I would like to be back to a somewhat normal state thank you very much. Unfortunately, this is not up to me, so I'm coping as best as I can.
M
-
Debbi,
I never had any major problems like I've described prior to my surgery. I did wear a night guard several months after surgery but at the moment it kills my teeth. I think for me I seem to have so many symptoms because it is my facial nerve. The nerve has the tumour with smaller little dots of neuroma running along the nerve. When I saw the MRI and CT scan that was after my first surgery, it was like looking at a night sky, with the moon and stars dotting the nerve. I also feel that any type of cranial nerve damage effects the other nerves. All that swelling after surgery must cause a strain on the other cranial nerves.
You know some days I spend on the verge of tears because I can't tolerate all of my aches and pains. I've always been weather sensitive. I also find these short dark days do not help with my sunny disposition ::) I forgot to mention I'm also on Effexor. Effexor and Neurontin are not too figure friendly :'( Mind you my appetite isn't what it use to be and my weight gain has really been minimal, but when you have been naturally slim all your life, the extra pounds aren't impressive.
My Christmas wish is for Santa to take away ALL of our aches, pains, symptoms and to restore hearing to ALL. Virginia is there really a Santa Claus? Help Capt Deb, I need to know!!
Anne Marie
-
What I am not sure of is how this can be related to the AN surgery? What I've read is that the trigeminal nerve is the 5th nerve, which is a ways away from the 8th - or at least I think it is.
Hi Debbi,
It is true that the branches of the trigeminal nerve are further than the 7th and 8th nerves, but for those of us with the larger ANs, they may impinge on the 5th nerve at its root entry to the brainstem. This is why trigeminal symptoms (ie. numbness, odd taste, dry eye) can be presenting symptoms leading to diagnosis (at least they were in my case). So it is not unlikely for the trigeminal to take a hit either from surgical removal, or from radiation, giving all these fun symptoms that you ladies are describing.
Marianna
-
Well all we are quite the Painful Princess'!! My issues of late started about a week after my GK. I ended up with severe dry eye, which is doing well now. My pain started in my lower jaw, and has moved all over the right side of my face from front teeth, to molars, to my ear, and even scalp. I have a scar neuroma, they think, also at the base of my scar (bottom of my ear)....so I of course attributed my initial pain to the scar neuroma......but I woke one night in the middle of the night in pain worse than anything I have ever felt.....and I've been through some pretty painful stuff....meningitis, shingles, kidney stones, two kids.....And this pain was HORRIFIC. Leaving the house to go to the doctor was HORRIBLE....the wind hit my face like a mack truck......Hot and cold only seemed to irriate it more. Now that I've gotten some relief with the Tegretol I don't have nearly as much pain, and some days literally no pain at all. So I do feel a bit fortunate.
Hang in there Anne Marie.
Debbi, I would almost venture to say your safe skipping the dentist and calling your doc. COuld it be from facial nerves regenerating? Maybe? But best to get it figured out before your in so much pain you can't take it.
Somedays I wonder if it is all form irritation from the GK??? My doc says my sympotms were "too soon" after the GK for it to be the GK....but I'm not so sure.......
Melissa
-
Well, I've got the dentist appointment this morning so will go ahead just to rule that out. In the meantime, I sent an email to Dr. Roland (I think he's in Israel this week doing surgeries) to bring him up to speed. Last night the pain was so bad that two percoset didn't even put a dent in it, which points to nerve pain, not tooth pain. I ended up taking double doses of advil a couple of times during the night and this morning.
In truth, it is such a relief to know that this isn't "all in my head" (pun intended) - I've been trying to ignore the increasing pain over the last 3 or 4 weeks. Every time it seemed like I couldn't ignore it any more, I'd get a couple of pain-free days, then the pain would come back, only worse. Ugh.
I will ask about the tegretol, Melissa - sounds like it is helping you.
Debbi
-
Debbi,
Souds like me.....I was taking 2 Tylenol 3 and 3 advil all at once......Trying to get rid of the pain and it didn't even touch it. My relief came with my trip to the ER, because it was Friday evening and my doc could not be reached.....I got a nice shot of morphine and a darvocet prescription which got me through the night until I was able to talk to the doc and start the tegretol.
Goo luck to you, Hope you get some relief somwhere.....keep us posted.
Melissa
-
Well, back from the dentist. He didn't even both to x-ray my teeth (since I was just there two months ago) but went straight for TMJ. He said that the symptoms for TMJ and TN are very similar and can cause mis-diagnosis. He wants to start treating me for TMJ first and see where we go - Dr. Roland agreed. I just got fitted for a new bite plate (my current mouth guard is 10 years old) and a prescription for vicoprofen for the pain (thank you, thank you, thank you.) New nite guard will be in next week and then I need to give it another week or so to see if there's an improvement. The dentist also said that tylenol and percoset have virtually zero impact on this type of pain. :P
I have been reading up on both TMJ and TN and the symptoms are frighteningly similar, although TN seems to involve more non-pressure generated pain. I was encouraged to read that severe TMJ can cause neck pain, both front and back, which I've had for three or four months - maybe this is the explanation!
I will say that the last 48 hours have been the most intense pain I've ever felt - this actually made the first post surgical day seem relatively calm (although maybe all that morphine they pumped into me in the hospital helped!) I have already popped the first vico pill and it seems to be helping the stabbing pain.
Once again, I find myself being so grateful for this forum and all of you. I've always been healthy and dealing with things like this are overwhelming to me. Don't know what I'd do without you.
Melissa, it was so wise of you to go to the ER when you did - and thank goodness they gave you the right drug cocktail.
hugs to everyone - especially Marci, Melissa and Anne Marie
-
Hi all,
Because my tumor originated from the trigeminal nerve, I know that's what's going on. Doctors are in agreement. Regular painkillers don't even touch this but Clonazepam (which I take to sleep) does seem to help so that's what I'm living on until Dec. 16. Today has been better (first time I could say that) but I know that tomorrow will be another day...
Best
M
-
Marci-
I wish I couldn't say this, but I FEEL your pain! This is the worst pain I've ever had. And, I'm now eating only oatmeal, pureed soups and yogurt - what I really want is a fuge brownie with walnuts... >:(
Debbi, creaving something chewable...