I returned to my Neurologist today after a nasty, nasty and bizarre attack of pain two weeks ago which left my doctor and I at odds with my diagnosis.
To sum up to those who don't know the situation: I had my first true TN I type attack of dagger like electrical shocks along my left mandible which was caused by me chewing food. My bodies stress response was to seize up and I felt referred pain in my neck and, throat and non TN affected side of m face.
The worst thing I could have done was say the word "bilateral" to my doctor when describing the pain and I did just that.
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Well, today I met her face to face and she proceeded to explain to me though I have TN pain it is in the wrong place which is low on the mandible. Last I checked (with internet research and people on the forum) the Trigeminal's 3rd branch IS the mandible? I listened to politely and informed her I can actually feel the Trigeminal turn on like a light switch and then moments later turn off. It is the most bizarre feeling I cannot explain to anyone. The feeling happens 30-50 times a day all across the Trigeminal branch V1,2 and 3. Sometimes with shocks and searing pain and sometimes it is just...on.
When the darn thing turns off it is extacy like a pleasant long bath. I just feel like Ahhh heaven.
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To cut all this short (sorry for length)
She shrugged her shoulders, said this is all Atypical but Atypical does not mean bad nor that I am crazy. The plan for treatment is the same such as medications. But, she has cancelled my MRA yet I can still have my MRI of my neck. But the treatment is NOT the same. If I have TN I ultimately could have surgery options.
Why would a Neurologist with many TN patients say Mandibular TN pain is TN pain in the wrong place??? Am I the one in the wrong here?
BTW I did get some muscle relaxants and anti-anxiety medications which have already calmed me down. But I had to nearly bawl like a baby for them. Completely unnecessary for someone to have to behave that way for treatment. I am a stoic person by nature but to receive treatment, at this point, I would have licked her damn shoes.
I am sorry to hear that this is happening. I too am left confused because I feel pain in the mandibular and have had the referred pain in my neck. I have wondered if the referred pain is from muscles tightening up from the face pain because it is more of a dull feeling in the neck for me instead of shocking and sharp.
Oh my. Coqi that sounds just awful your visit. I cried on the phone to the nurse one day and got a phone call back from the doctor that evening. Shocked me. So I get what you mean about practically crying to get meds. Its not right. Man you have both one and two symptoms it kinda sounds like to me. That sucks. I am really sorry for you. It makes sense that if you have it in the lower branch it could radiate down into you neck tho. I tighten up all kinds of places from the pain and catch myself doing it and force myself to relax as I know it's not helping. Did she give you Baclofen then?? Wishing you to feel better!! Min
I would say you need to find another doctor. You are the patient and she is supposed to be helping you, not making you beg for treatment. I am fortunate that the doctors I have seen have been very empathetic and want so badly to find a treatment that works. However, my neurologist seems to be very conservative in his treatment. Said any kind of procedure would be last resort and just wants me to live on drugs forever. I'm not up for that if there is a surgery or procedure that can bring me relief. I have 2 boys to raise and do not want to be drugged up and loopy if I have other options. So, I will be seeing a neurosurgeon next week and hopefully getting some options. Also, all of my pain is in the mandibular branch. To be specific, my pain is located deep under bottom right teeth. I have never had a doctor tell me that could not be TN. To the contrary, that's the only explanation they have been able to offer b/c all dental tests have been normal and my pain has followed the pattern for typical TN. I hope you can find relief soon. I know how frustrating it is.
I know it's already been said, but wanted to underscore. I think you should find a second opinion. My pain is in the mandibular and maxillary branches on BOTH sides of my face. I can't imagine what your doc would be thinking to say that is not TN. I feel like my teeth "vibrate" from the pain sometimes. I also feel like someone is trying to put a cigarette out on my face in several spots around my jawline and up around the bottom of my nose. I have been blessed with an awesome neuro that listens very intently during my visits and lays out all my options on the table and lets me talk thru them to find what works for me. He kinda acted funny when I told him I have it on both sides and kept saying that it "was so rare" which made me feel like I was imagining it. But aside from that he has been great. Good docs are out there, I hope you find someone who is willing to help you out. No one deserves to live in pain when it is not necessary. Good Luck!
I have pasted this here for all who may have concerns about their TN. It is from the Face Pain Info tab at the top of the page. As you can see the Mandibular is included. Maybe your Dr needs to come here for a few lessons Coqi! I have had pain there and my neuro has said it was definitely TN and it responded to my TN meds.
Jackie's observations are not at all out of line. Your neurologist doesn't seem to have much of a handle on the physiology of the trigeminal system. She might learn a few things here. Besides which, if she has reservations about pain being "too low" on the jaw, then all she needs to do is consider the possibility that in addition to involvement of the 5th cranial nerve, you might also have involvement of the 10th -- glossopharyngeal nerve. Compressions can occur on either, and they exit the brain stem only millimeters apart.
FYI: angiogram might not prove particularly helpful. But if you decide to consult with another neurologist, you might inquire concerning sub-millimeter thin-slice MRI done in FIESTA mode (there are specialized magnet weightings in this procedure) and focused on the brain stem. The procedure should be done both with and without contrast agent, and the images post-processed to do a 3-D construction. If anything is going to be found compressing either nerve, this is the procedure most likely to see it.
Thanks for the replies everyone. In my life, I was raised doctors were gods and what they said was Bible. You did what they told you and if you continued to feel bad well...too bad.
In this day of mass media, the internet and information at our fingertips, the veil is being torn a bit and exposing our doctors as simply human. I've been extremely lucky to have many wonderful doctors in my life but none of them can know everything.
But on this topic I surely expected mine to know the three branches of the trigeminal and not argue with me about it. I know her heart goes out to me but I don't think she understands the Trigeminal Community's need to know a source or as close to a reason as possible for the debilitating pain we must live with.
Red: I have taken down the information you've given me. I am pretty certain I will be seeing another neuro and will want another MRI. After my recent episode and symptoms, I would not doubt if I have compression on the trigeminal and/or glossopharyngeal. The entire thing was brutal and involved teeth, tongue, esophagus, ear and neck.
tinah: Just an FYI for giggles. My doc said teeth don't vibrate and I needed a sedative =P My teeth vibrate all day lol
Min C: I was given Flexeril. I've heard Baclofen is best for TN. I have a feeling I'll be with a Pain Management clinic soon who might have more insight.
I have a question in a similar vein as this. I need to go to the Dr but am putting it off as long as possible. I hurt constantly for the previous two days and about 9:00 last night it just quit. Except for about an hour this morning I have been pain free. I know it will start again. Anyway, my one trip to the DR about 6 weeks ago, he diagnosed me right off. I had already read about it on the internet and was pretty sure thats what it was. If I go back to him he will want to treat me with drugs and I don't think he will refer me to a neurologist. If I go to my other Dr he will refer me to a neurologist. The reason for 2 doctors... I work 75 miles away from my house, so I have one in my home town and one in my work town. Would you go to the one that will refer me to the neuro or let the other Dr treat me. Both are competent.
A neurologist would probably have more experience in the treatment of TN and the various options you have to deal with it. Where is your pain? I tried to deal with the pain without drugs for a good while, but have been in such a bad flare for the past few months that I had to go on an anti-convulsant. I am taking Trileptal and it is helping maybe 60% on knocking out the pain. Tegretol just made me too loopy/forgetful, but many people take it. I just could not tolerate the side effects. Trileptal is easy for me personally to tolerate. Good luck!
My TN hurts around my ear at times, like my ear is out of joint, and somtimes it hurts around my eye and top of the head and sometime my jaw and teeth, and sometimes it is my sinuses, and then sometimes my whole side of face and head and then sometimes it even feels like my left jaw hurts along with it. I also hurt down the side of my neck. I have even had a hard pain or two that has hurt down into my ribs. Is this normal?
Competence is relative, Bullit. A neurologist much more often works regularly with medications used in trigeminal neuropathic pain, and may be significantly more attentive to side effects and blood toxicity issues.
