Today I had my neurology appointment, such fun, my Primary Dr. Was the one who diagnosed me with Type 2. From the second the neuro walked in it was like doing battle, my pain started five months ago with ice pick like ear pain in my left ear but in the last few weeks it has moved to my jaw to the point where I can barely open, chew its like a migraine in my jaw or a vice its debilitating, hes sending me for an MRI but hes just convinced its Type 2 he basically didnt listen and said theres no way pain would go from my ear to my jaw . I told him how excruciating it is and how its never stopped hurting, then he said he might be wrong he'll see what the MRI shows if it shows a blood vessal pressing etc. And go from there. I'm so tired, I'm so sick of this pain and having to advocate and explain things to doctors they should know. What do you all think??
Hi,
I’m sorry your neurology appt. went so bad. I have had so many appt. like yours where I walk away so discourage and feeling like I will never be in less pain. I know you are going to an MRI, but have you thought about finding another neurologist. Personally, he doesn’t seem like a neurologist that you want managing a painful life changing condition. Do you live by any teaching hospitals as I know they usually have at least one neurologist in there neurology dept. that knows something about TN. I have found that the doctor makes a huge difference in managing this journey.
I wish you all the best and sent you a friend request
Hi Beth, I'm not far from OHSU in Portland, unfortunately my insurance probably will only pay
for me to see certain providers, I think I can at least get another referral to a new neuro.It was so
weird it was like he hadnt heard of type 2 and he didnt like my use of the word atypical and because
I don't have the stabbing pain and electric shock type pain it therefore isnt any kind of trimengial. He wants
to refer me to a jaw specialist which I don't even know what that is, and my jaw has just recently become the
problem. Idk.. meanwhile in pain cant eat, think ive had maybe choc milk or something its horrible. Thanks for
listening! How are you? What has helped you? Thank you for your concern and friend request :)
Coffeehouse, yes absolutely the pain can be in the Ear & the Jaw…it’s extremely frustrating that “we” need to continue to educate our medical professionals…don’t lose heart…advocating unfortunately is part of our journey…most doctors refer to TN2 as Atypical (atn) regardless of the name your pain needs to be addressed properly.
MRI rarely shows a blood vessel Unless the MRI is a special fiesta type MRI ( sorry I can remember the exact term) or the Neurosurgeon (rarely the radiologist) who deals with TN compressions regularly is reading it…
You can definitely have TN without electric shocks! Ugh…
Time to look at your provider/ insurance ( sorry I’m from Canada) and see if there’s anyone on the list who is knowledgeable about TN or willing to learn. I’m going to send you a link to a paper you need to print off…have the doctors ( who may not be receptive) or even family and friends read it.
You know your body best, trust your instincts, be open to considering other possibilities but trust your gut.
First things first your pain needs to be addressed as soon as possible…sending positive thoughts,
(( hugs )) Mimi
Hi Coffeehouse, I know exactly how you feel. My neuro has never even heard of TN, but it seems the one who does, doesn't have any bedside manners, so I'm going to educate the first one! He does seem at least to be willing to learn. I had my MRI results read to me on Tuesday, and I go for a lumbar puncture this coming Tuesday, but my MRI didn't even pick up the TN nerve because the table was shaking so much! The only way my current neuro realizes that something is wrong, is because I had an episode hit me while I was in his office....red face, clenched jaw, couldn't talk, and was reduced to making hand signs to my mother so she could speak for me. If you can get someone to go with you to your appointments, maybe they can speak for you, since you're having trouble talking. I know I just want to curl up into a ball when mine hits. Don't give up hope. Someone will listen to you, even if you do use their medical terminology! They'd just prefer we stayed clueless, but in our case, we cannot.
Mimi, thank you for the information, I was afraid of that with the MRI that it wouldn't show a blood vessel. .. guess I will have to wait and see, Sorry no link came up and I would like to bring the neuro some info when I go back. Thank you :) Ellissa
Hi,
Hope your pain is doing better today.
It is too bad that you cannot go to OHSU as usually teaching hospitals have neurologist that specialize in TN, but even if you can go to a new neurologist, I think it would be worth a try. When do you find out the results of your MRI? Is the pain getting any better, so you can eat? Are you currently on medication? Are there any surgical options that work for TN 2?
I’m doing okay, but last evening/night was night so not so good. I am on Tegretol 1000 mg, Baclofen 80 mg, and Clonidine patch 0.1 mg which has me at a six most of the time, but there is times when the medication doesn’t even begin to touch the pain. I was on 400 mg of Lamictal and for me that was game changer. I don’t know if it helps with TN 2, but is worth trying. Unfortunately I could not stay on due to the side effects, but it was the difference between not being able to make it and feeling like I could live. I was so disappointed when I had to go off it. While I was having surgery at UCLA in 2012, my anesthesiologist recommended clonidine patches as he said they help with TN. I have been using them for the past year and a half and they really help.
I hope you are able to find something to help and please keep in touch