We are patients living with Trigeminal Neuralgia, here for your support.

New Doctor - New Diagnosis!!!

Okay, went to a new neurologist today and he completely contradicted the other neurologists and neurosurgeons that I have seen. He said I did not have TN because my pain was also in my ear and the right side of the head - not just in my right cheek. I also told him that I have been having (in the last couple of weeks), strange, intense headaches in the top and back of my skull. He said ATN was just a term that "other" doctors used when they have no idea how to treat you and basically, it means, there is no treatment for that condition. He felt I had more going on with my pain and gave me 2 nerve blocks in the back of my head, behind each ear, into the ocipital nerve. He said that if these nerve blocks prevented the pain in my cheek, upper right jaw, that it proved that I did not have TN. He pretty much refused to acknowledge that a condition called ATN exists. He was looking at my MRI and did not even mention the blood vessel that was touching the trigeminal nerve! I am totally confused, frustrated and numb all over the back of my head. Also, had to pay for the nerve blocks right then because my insurance doesn't cover them. I am sooooo tired of seeing different doctors. Geez. Why do all these doctors have different diagnoses? This doctor was a referrel from the neurosurgeon that confirmed that my pain was ATN!!

Tags: ATN, block, nerve, neurologist, ocipital

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Permalink Reply by Richard A. "Red" Lawhern on February 7, 2012 at 7:15pm

Your doctor needs to read the classification system for trigeminal pain that has been developed at OHSU in Oregon, by Dr. Kim Burcheil, a member of the TN Association Medical Advisory Board. You may also have occipital neuralgia (back of the head) and geniculate neuralgia (icepick pain in the ear). Nerve blocks can be a useful diagnostic tool, but they don't work in most trigeminal neuropathic pain patients. A positive response to anti-convulsive meds or low doses of a tricyclic antidepressant like Amitriptyline is a much more reliable diagnostic indicator.

Suggest that you drop this neuro like a hot rock and find someone who has been properly trained.

Regards, Red

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Permalink Reply by D McGinnis on February 7, 2012 at 9:34pm

Red - amazingly it was after I asked this doc if he would put me on Amitriptyline, that he went right to the nerve block. Is there something "special" about this medication that sends my doctors to look for another solution to my problem? Getting pretty discouraged here, but will keep trying. I go back to this doctor on Friday as a followup to see if the nerve block affected my pain. So far, in the last 5 hours, I am still having some breakout pains, and still having the weird inside of the head deep pains. If my head is numb (which it totally is) from my ears to my neck, why would I still have these severe pains? I so want to print out your response and hand it to the doctor on Friday, but I won't. He had a pretty big ego and I don't think he would appreciate it. (I appreciate it!.)

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Permalink Reply by Min on February 7, 2012 at 9:45pm

Wow D. That's all I can say.. Wow ...Good luck. Wait I can say more. This neuro... I agree with Red Iwould drop like a hot potato!!! Best wishes to you. I hope for some relief with this procedure. Min

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Permalink Reply by crystalv on February 7, 2012 at 10:37pm

Amitriptyline is an old drug, so some doctors don't use it because they think the newer meds are better. But there is nothing narcotic about it that would raise a red flag.

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Permalink Reply by Lisa (iamrite) on February 8, 2012 at 3:17am

I want to PUNCH doctors like that! Do they seriously think that the "experts" in the area are dumb? He does not sound like an expert but a man on an ego trip. Dr. Burchial is one of the leading most experts in the area and he and his department are quite clear that ATN exist and is very, very real. They may not know what causes the pain, but it is nonetheless, real.

If this nerve block doesn't work, is Dr. Ego then going to tell you that it's all in your head (pun intended) and you need a shrink?

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Permalink Reply by Stevie R. on February 8, 2012 at 6:10am

I also have this intense pain in the top and on the back of my skull...along with the other areas of course. For me it's pressure and burning...wich feels like I've been whacked over the head basically. How would you describe yours D ?

sorry for this bs you're going through with this neuro. Makes me so mad...been there more then one times. Shake it off and try to keep thinking for yourself and stay positive as much as you can.

Also: He was looking at my MRI and did not even mention the blood vessel that was touching the trigeminal nerve!

I didn't know this can be seen on a MRI..Isn't this a clear sign? Red, would you maybe shine a little of your light on this for me ??? I'm going to see my neuro next week..could use some input. Thank you so much!!!

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Permalink Reply by Kay May on February 8, 2012 at 8:09am

I had occiptal nerve block injections also... It did not make a difference for me... just made my head and neck really sore :(

I've had many "different" theories and treatments... I understand how frustrating (and expensive) it can be. I agree with "Red." Find another specialist. Do some research before you see them to see where they practiced and their specialties etc. That's what I did before I saw my doc now... and she is great!

I have a LOT of pain in my ears as well. My neurologist now believes its a combination of TN and Glossalphyrengeal Neuralgia.

Also... sometimes some health systems offer financial assistance. Call the biling department and ask if they have any type of application for financial assistance. (I qualified for one and didn't have to pay anything!! And they did a whole bunch of tests.. a CT etc. ) The worst they can say is "no." lol.. But it's worth a shot!

Here are the different "theories" I've been told/treated for with no relief:

Non-Allergic Rhinitis (Nasal Sprays)

Allergies (Allergy Meds)

Eustachain Tube Dysfunction (they put in ear tubes)

Longing Ear Infection (5 rounds of antibiotics later.. still pain)

"Facial" Migraines (huh...?)

"All in your head!" (ER doc... thanks....)

Jaw Hypermobility (Physical Therapy)

Lingament Laxity in the Neck (Chiropractor)

Nothing Neurologically Related (Said Neuro 1)

Not Sure! (lost count how many people said this...)

Don' t let this doc get you upset. Find someone else :))

Good Luck with everything and God Bless <3

*Hugs* Katie :))

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Permalink Reply by Richard A. "Red" Lawhern on February 8, 2012 at 8:10am

Stevie: a detected compression of the trigeminal nerve is not a 100% confirmation of trigeminal neuralgia in either of its primary forms. But it can be a confirmation for some patients that MVD may be a useful procedure for addressing part or all of the pain. In post-mortum hospital studies of the 1980s, many people were found to have such compressions who otherwise had no facial pain at all. The symptoms you are describing seem to involve more than one nerve and might possibly involve some form of central nervous system sensitization. Some form of cluster headache is another possibility to be investigated.

Amitriptyline is an "old" drug and it can be a mixed blessing in some patients. In some people it is associated with suicidal ideation, even though it is a tricyclic antidepressant med (look it up, please, at http://www.rxlists.com). Clearly if it is prescribed, it should be tapered up gradually, with frequent monitoring of outcomes by the prescribing doctor. If your doc doesn't think it is useful in your case, then he owes you a thorough explanation of why not.

Regards, Red

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Permalink Reply by Jackie on February 8, 2012 at 9:49am

D it is just this sort of thing that makes my blood boil!!!! Don't you have enough going on in your life without having to suffer this fool??? You have my sympathy. Is it any wonder that ATN/TN patients are often at their wits end? If you don't have it then there are several hundred others on here who "don't " have it, and we all know they do. He could do worse than read what is written on here by members and Red, They do seem much better informed.

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Permalink Reply by Cleo on February 9, 2012 at 2:12am

Anyone MD can claim to be an expert on TNA aka FPA for a membership fee... It is just a website....

Become a Member | Facial Pain Association

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Permalink Reply by crystalv on February 9, 2012 at 3:10am

Cleo, there's a big difference between being a member and being a board member. Not sure why this came up....

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Permalink Reply by Richard A. "Red" Lawhern on February 9, 2012 at 7:27am

Actually, the Face Pain Association (FPA) allows physicians to list themselves by specialty and location, but does not label them as "experts". I would agree with Crystal, however, that being a member of the Medical Advisory Board is normally a substantially stronger recommendation. However even that isn't perfect. I've heard several complaints from members here at LwTN, concerning two of their neurosurgeon members. So checking out the various online doctor rating services on a practitioner you intend to see, is a very good idea.

Regards, Red