A physician’s assistant ordered my MRI and was the only one to review it. At my neurologist appointment she just read a letter from the PA saying it was normal. Would it be out of line to request that my neurologist actually review my MRI? The PA wasn’t even looking for TN. Are there other things that I should ask of my neurologist in order to get the best care possible? I’m not on anything for pain and on a lower than normal dose of Gabapentin because I was having trouble doing school work with the side effects of Gabapentin. Is there anything I can take to help with the pain that won’t leave me foggy? Any advice for a newbie is welcomed! I’ve only been suffering with us for less than a year and just diagnosed in Feb. I’ve read a lot of stuff on line but it’s not the same a someone’s personal experience. Thank you 
From my understanding, Neurologist do not read MRI's, that is a job for a radiologist.I know that does not answer your question but I hope it helps.
I'm with Jackie on this one. MRI is always interpreted by a radiologist. Wiser neurologists realize that image interpretation is a job for somebody who does it every day.
There are medication options to discuss with your neurologist, however. Some patients do better on a combination of Gabapentin and a mild muscle relaxant like Flexeril, or a tranquilizer like Valium in low dose. However, be advised that "fogginess" is a frequent side effect of just about all of the available medications for treatment of chronic trigeminal pain.
Sorry to rain on your parade, Sara... it's a one day at a time business.
Go in Peace and Power
Red
Hang in there.. it's a bumpy ride.
dear Sara , (are you by ANY chance from Israel?) you look familiar to a girl in israel with TN :)
i , for this time disagrees with Jackie and Red which their knowledge is huge, from my experince.
first - in our condition - it's not Rude to ask anything i think. i was 'too nice' for too long.
second - i've seen many doctors and the specialists of them insisted on they'reselves to see the actual MRI disc.
it came to the point that several doctors already saw my MRI disc - and i insisted for new doctors not to review it - cause i already now - nothing's wrong with my MRI. but i know some doctors (for example a Raumatologist - insisted i'll give him the MRI so he can show in his hospital so that they can check bone problem for example. he said the most Radiologists look for a tumer pressuring.. and he was looking for something else - change in the bone or something.
what i want to say - that i think you are right in your thought that even when there's 95% the radilogist know his job - in our rare condition it's need someone who really willing to TRY and see what is the problem. even if in the end - you'll go back to the place where understaind nothing can be seen wrongly in the MRI.
good luck
Nir,
I would caution you not to generalize too far from your own experience. While it is of course appropriate that a neurologist become involved with his or her patients in a constructive relationship, very few neurologists are trained appropriately in the interpretation of MRI imagery -- whereas all radiologists are. The smart neurologists realize that their expertise is not universal, and rely on the findings of a radiologist. They will review both the images and the specialist findings and case notes with the patient, explaining the terminology. The not so smart docs may rely on their own instincts and sometimes get patients into a world of trouble because they don't have the appropriate background to recognize what they are seeing.
A radiologist may look for several different issues in an MRI with a patient who has pain in the trigeminal distribution:
-- Tumor
-- Arterio-Vascular Malformation
-- Cyst
-- Distributed enhanced high-reflectance regions typical of calcium deposits in white matter
-- Evidence of past aneurysm or stroke
-- Vascular compressions near the brain stem
-- Bone irregularities
-- Dental abscess
-- Cracked teeth (not always easy to detect, but still apparent in many cases)
-- Sinus abnormalities
-- MS plaques (special cases)
And there are probably quite a number of additional signs that will be checked -- to eliminate causes for trigeminal pain, and help narrow the diagnosis.
Regards and best,
Red
I absolutely agree with Red. I was even trying to find out who the good radiologists are in my area so I can ensure my scans are red properly.
When I had my second appt with my facial pain doctor, he called for the results of my scan, and specified to the receptionist that it had to to be a particular radiologist, none of the others would do. He was also the first doctor to give me a copy of the radiology report. I never knew to ask before. This is what made me realize how important the radiologist is. It makes perfect sense now -- radiologists read scans all day. Naturally they're the best at it.
Thanks for all the replies.
I agree that a radiologist is the one that reviews my MRI, obviously. My question was more that, if no one was looking for TN when the MRI took place but now my neurologist thinks it is TN can't she review it for signs to confirm it or perhaps have a radiologist look at it again with TN in mind? I got the MRI before I was ever referred to a neurologist. To check to see if anything was pushing on my temple where the pain seemed to originate. TN was never bought up everyone kept referring to my pain as a headache even though I told everyone that ever held my chart that my face hurt more than anything.
In fact even after my TN diagnosis I went to my primary doctor for my follow up and the nurse there said "so are your headaches all better then?" and I said it actually turned out to be Trigeminal Neuralgia to which she replied "well, they have a fancy name for everything these days."
I know its not possible in all causes but I've read that people get diagnosed by their MRIs because of the way the nerve and the artery intersect or the size of the artery. I've done a lot of research about TN after my diagnosis but I admit it has mostly been online so I may be misinformed about this issue.
Thanks again for all the replies. I have my 2nd appointment with my neurologist in May and I want it to be as productive as possible. :)
Nope, I live in Upstate NY.
Nir Morita said:
dear Sara , (are you by ANY chance from Israel?) you look familiar to a girl in israel with TN :)
i , for this time disagrees with Jackie and Red which their knowledge is huge, from my experince.
first - in our condition - it's not Rude to ask anything i think. i was 'too nice' for too long.
second - i've seen many doctors and the specialists of them insisted on they'reselves to see the actual MRI disc.
it came to the point that several doctors already saw my MRI disc - and i insisted for new doctors not to review it - cause i already now - nothing's wrong with my MRI. but i know some doctors (for example a Raumatologist - insisted i'll give him the MRI so he can show in his hospital so that they can check bone problem for example. he said the most Radiologists look for a tumer pressuring.. and he was looking for something else - change in the bone or something.
what i want to say - that i think you are right in your thought that even when there's 95% the radilogist know his job - in our rare condition it's need someone who really willing to TRY and see what is the problem. even if in the end - you'll go back to the place where understaind nothing can be seen wrongly in the MRI.
good luck
Sara,
MRI is helpful in confirming a diagnosis of TN, but it's not conclusive. At least 10-15% of people who go through an MVD after no vascular compression is found in imagery, are still found to have compressions characteristic of Type I TN. A better confirmation of the diagnosis is a positive response to a short course of one of the anti-convulsant meds.
Regards, Red
I've certainly seen a difference since I've been on Gabapentin.
Thank you. :)
Richard A. "Red" Lawhern said:
Sara,
MRI is helpful in confirming a diagnosis of TN, but it's not conclusive. At least 10-15% of people who go through an MVD after no vascular compression is found in imagery, are still found to have compressions characteristic of Type I TN. A better confirmation of the diagnosis is a positive response to a short course of one of the anti-convulsant meds.
Regards, Red
Sara,
To answer your question about shouldn't the Neurologist go back and look at the MRI, the answer is yes and no. I had my MRI through my Neuro, who just read the radiology report. When I found my facial pain doctor, I brought my MRI with me and he reviewed it himself, and didn't just rely on the radiology report. But that's because he works with TN all day long, so he really knows what to look for -- your average doctor, even a specialist, won't know.
Glad to hear the Gabapentin is working. That's great news!
Sara, there must sometimes be room for doubt as my neurologist did request a second opinion on my MRI. It was proven to be the same as the first. However I did appreciate her asking, especially as it was her idea.I liked how thorough she was, especially as she had a renowned expert take the second look. I now know a good neurologist is worth their weight in gold.
For what it's worth, I can tell you my experience. When my gp referred me to the neuro she went ahead and ordered the MRI since she knew I'd need one. My first appt, my neuro sat down with me in front of a computer and went over the disc with me. He told me that basically what he was looking for was any kind of tumor or deformity and if I had MS. Since both of those were neg, he went ahead and diagnosed me with TN (even tho he couldn't see a compression) and started me on tegratol which worked almost immediately, but I couldn't take the side effects. Several months later he told me that he thought I should have the MVD surgery and sat down again with me and googled it to show me what it was all about. (I had already researched it to death, but it was nice to have him sitting there for me to ask questions). He referred me to a dr at Duke University and gave me my MRI disc to take with me. ONce I met my surgeon I asked about the MRI. He told me that he did look at it but the resolution to the standard MRI didn't show enough to be conclusive. He offered up the FIESTA MRI which is a little more in depth but told me that he has seen it wrong so many times that he felt it was not worth time or money. He said there is really no way of knowing what he will find until he is in there. All that to say, I don't believe the MRI really holds the golden key. If the meds are working, you probably have it. And it's rare enough that alot of medical employees ( aka nursing staff) don't know about it. I was so blessed as my GP knew right away what I had because her father suffers from it. I know a lot of people go years being undiagnosed.
I do hope you find relief soon. Praying for a pain-free day!
Tinah and Sara,
In a demographic analysis performed from about 200 of our members, I found that at least 20% of chronic face pain patients went a year or longer and saw multiple practitioners before before getting a definitive diagnosis. At least four members of that limited sample had suffered for five years or more without diagnosis.
The training of dentists in particular with respect to recognizing this class of disorders, is simply abysmal. Even given these stats, however, the training of doctors seems to be gradually improving. A significant part of the improvement can be attributed to sites like the TN Association, facialneuralgia.com and Living With TN. Since 1997 when I first got engaged with this field as a patient advocate, the number of hits at google on the term "Trigeminal Neuralgia" has increased from approximately 4,000 to over 2.5 million.
But there are still general practitioners and nurses who don't recognize what they are seeing when a TN patient comes into their offices.
Regards both,
Red
Thank you Mr. Red. :D