i finally got into the er and went to my current neurologist. now i know why my neurosurgeon set me up with a new neuro starting in december. my current neuro told me that there wasnt any way he could help me and proceded to tell me that he wasnt sure that i even have TN ( a diagnoses that previous neuros and drs had given my condition including dr fukushima and the reason i underwent MVD twice and gamma knife). why do you ask that he said that? it is because he says he had never heard of bi-lateral TN and wasnt sure that it is a true diagnoses and that he has never heard of any one having bi-lateral TN and occipital neuralgia. at least he did one thing and set me up with pain management. im slowly losing confidence in drs. it seems my neurosurgeon is the only one that understands and knows what im going thru. i hope the new neuro has some idea of what to do.
I’m so sorry you’re going through this. I hope it gets better for you and your next neuro will be more helpful and knowledgable about tn. Hugs
In 2002 newly diagnosed with TN just a few months…I saw a new neurologist ( one very well known in my city) who looked at me and said" you must not have TN, because bilateral is ONLY seen in persons with MS, and it is very rare, you’re too young" ( I was 30)
Never mind the fact that my original TN1 had triggers and responded well to Tegretol. And my pain description perfectly matched that of someone with tn, I was textbook.
Never saw her again…was lucky to have a great GP who continued treating me for TN, thank God…I have often thought about sending her my file and saying some not so nice words ! Maybe one day…
Keep shopping around for a doctor or neuro who is liking to work with you and support you.
No one in their right mind would make up having TN…
((( hugs))) don’t give up! Mimi
to make the situation more complicated i have type 1 and 2 TN and occipital neuralgia all on the right and type 1 TN on the left (although not nearly as bad). i really wished my pain on that dr and wanted to tell him it wasnt possible to have bi lateral TN type 1 and 2. im just so frustrated with him i could scream. my comfort is knowing that i have a new dr next month and i never have to deal with that guy again. ill let you know how the new dr is. FYI my TN pain started when i was 37 (at that time i didnt know what it was). i was diagnosed when i was about 40, im now 46. i was just recently diagnosed bi lateral
ATN pain can be described as heavy, aching, stabbing and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, including teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, "behind" the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.
Many TN and ATN patients have pain that is "triggered" by light touch on shifting trigger zones. ATN pain tends to worsen with talking, smiling, chewing, or in response to sensations such as a cool breeze. The pain from ATN is often continuous, and periods of remission are rare. Both TN and ATN can be bilateral, though the character of pain is usually different on the two sides at any one time check out the link http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia
I would go back to Dr. Fukishima if your new neuro doesn't help you. God bless and good luck to you!
ARRRGGGHHHH!!! This pisses me off..after all you have been through someone is going to tell you that you dont have TN?? Are you freaking kidding me? RUN DONT WALK!! If you like Dr. Fukishima go back to him.
I just this past week have a local doctor who specializes in physical therapy tell me I had MS even when I told him I had surgery with one of the top surgeons in the country. He told me that my neurosurgeon didnt know what he was doing!! UM...my TN pain is gone so I think he had a real clue!!! This idiot wanted to do a spinal tap to prove my surgeon wrong..nothing like using me as a human pin cushion to prove a point. Needless to say I will never go back there, and its a shame since he really helped my neck pain after a car accident, but now I cant trust him.
I eventually called my neurosurgeon just last week and he got me some help in my area so I dont have to travel for hours just to get care. Someone out there will help you.
Sometimes I cant believe the stupidity and arrogance of some doctors, but then again , nothing suprises me.....
Ok I'm done now, lol
Wendy
The problem is that dr fukushima is a neurosurgeon not a neurologist and he is 4 1/2 hrs away. I’m hoping the new neurologist that I’m going to see on the 19th can help. Ive also been researching radiofrequency rhizotomy to see if I’m a candidate.
You are not the first, thirty first or even fifty first person I have read who reports a Dr who has not heard of Bi TN, we have over a hundred members here with it! All the best in looking for a solution.
that ass of a neurologist that i wrote about said he was sending me to pain management. well yesterday i got a phone call saying that a referral was sent in not for pain management but for physical therapy... i refused the referral and didnt make the appointment what was that dr thinking?! i told him that i tried physical therapy before and it made the pain worse. why would he send me there again instead of pain management?! i hope that the new neurologist can help me. the 19th seems so far away and the pain is getting worse my meds arent helping very much sometimes they dont help at all. what do i do until i see the new neuro?
perhaps he can give you a very good referral? I got one for Hopkins, from my neurosurgeon in NY, which is the same distance for me as Philadelphia and a much more pleasant drive, since I cant seem to get a good one in Delaware
Wendy
ouchie-booboo said:
The problem is that dr fukushima is a neurosurgeon not a neurologist and he is 4 1/2 hrs away. I'm hoping the new neurologist that I'm going to see on the 19th can help. Ive also been researching radiofrequency rhizotomy to see if I'm a candidate.
Ouchie-booboo:
I'd love to hear more about your experiences having both type 1 and type 2 TN. I feel like that's my situation, as the Tegretol has completely eliminated the electrical jolts that I had (type 1) but has left me with this aching, pulling, almost constant pain (type 2?). The second one doesn't respond to anything except randomness, as I do find it goes away for about an hour or so for absolutely no reason.
Feel free to contact me on here if it's easier.
ouchie-booboo said:
to make the situation more complicated i have type 1 and 2 TN and occipital neuralgia all on the right and type 1 TN on the left (although not nearly as bad). i really wished my pain on that dr and wanted to tell him it wasnt possible to have bi lateral TN type 1 and 2. im just so frustrated with him i could scream. my comfort is knowing that i have a new dr next month and i never have to deal with that guy again. ill let you know how the new dr is. FYI my TN pain started when i was 37 (at that time i didnt know what it was). i was diagnosed when i was about 40, im now 46. i was just recently diagnosed bi lateral
As a side note, the doctor that wanted to do the MRI etc finally got back to me today, I didnt bother to answer I was so disqusted....the message was...we are calling to schedule an MRI to check for MS!! What about the fact that its been over a week since I was there?
grrrr....these doctors are trying to make me go postal, lol!!
wendy