MRI came back clear and I'm frustrated

Background. I’m 27. The facial pain and tingling started late April 2015. Has my neurology appointment in Nov. and was diagnosed with TN. Had an MRI on February where they were looking for either a blood vessel or lesions. There was NOTHING in the scan. Nothing. I know I should be happy but this tells me nothing about the pain I’m dealing with. Tonight I went to see an optometrist as there’s pain and pressure behind my eye. And so far she cannot see anything wrong with my optic nerve. I’m not crazy. There’s something wrong me! Other people out there feel the same way???

I am older but when first diagnosed my mri was clear too when I finally had surgery they found three small veins rubbing against nerve. You are not crazy the fact that you are in pain is the proof HOPE you find some relief!

Mallory, as witnessed by "Hanging In There", MRI is useful but not conclusive in figuring out the sources of your pain. Likewise, not all MRI machines are created equal. The "gold standard" in this field is Magnetic Resonance Angiogram with specialized real-time processing done both with and without contrast agent. You'll find it referred to in literature as "FIESTA" - Fast Imaging ... etc.

A couple of neurosurgeons have told me that when they do an MVD, perhaps 10% or more of patients who have had no confirmation of compressions in the best resolution MRI imaging available, will prove to have compressions that weren't seen in the images. That said, up to half of the population have evidence of compressions in imagery, but do NOT have chronic face pain. So there seem to be confounding factors in the physiology.

Some physicians believe (and publish) that the most reliable confirmation that you are dealing with TN or ATN is a positive response to a short trial of one of the anti-seizure meds or a tricyclic anti-depressant. If you don't respond to either one, then there seems to be a developing trend toward assigning a diagnosis of "trigeminal neuropathic pain" as a default umbrella term to describe your pain. In that unhappy event, you may be in for a protracted process of trial and observation as your physician seeks a combination of meds that works for you.

Some of our members have expressed reservations concerning drug cocktails which haven't been tested for interactions. I've talked to enough patients during the past 20 years to understand the reservations, but not to be convinced that such cocktails shouldn't be tried with careful observation of outcomes and side effects. This is a matter for detailed discussion with your care providers. If they are going to recommend a drug cocktail, then two questions are pertinent: (1) How many of your patients have had good results on the cocktail you recommend? and (2) How will you monitor me for untoward reactions or side effects?

I wish you well. You're certainly not crazy. Your pain is real, though not yet fully explained. It might NEVER be fully explained, but as long as you are getting individualized care and active oversight, the medications route is worth trying. Many patients do well for years on one or more meds that have been found to work after the patient has been worked up to therapeutic levels.

Go in Peace and Power


Hi Mallory-

I also have had clear MRI's for the last 6 years, but both times they went in to do the MVD they found compressions.

What is the plan for handling your TN pain? Have they started you on any medicines, or were they hoping to see a compression on the MRI and do a procedure?

Stay strong!


Hi all! Thank you so much for replying! The scan was looking for compression as well as lesions and demyelination. I’m currently on Lyrica as I had a bad rash reaction to the carbamazepine (as well as I felt high allllll the time). I’m currently investigating the eye pressure and pain. I don’t see the neurologist until May 2nd so my pain management will stay the same Until then. I’m also going to as my GP about testing for shingles and Lyme disease. I just want to know what is causing this but I guess it sounds like there’s a possibility that I may never find out. And that sucks.

Hi Mallory,

I understand your frustration completely. Every test I have is normal and I hate it. I actually stopped looking for answers after two years because it gets to be exhausting. Like the others have said it is "normal" to have a normal MRI. I guess stop for a moment to be thankful that there were no lesions or tumours and remember that it is NOT used to diagnose TN. It also depends who reads the MRI--unless it is a neurosurgeon versed with TN then they are likely to miss any problems that show.

It sounds like you are being a good advocate for yourself and pushing forward to find answers. You are not crazy and there is something wrong with you. If your Drs in any way treat you like you are making it up or suggest that it is psychological then you need to look for a new Dr. Finding proper help isn't easy but there are Drs and specialists out there that are up to speed with what is happening and can work with you to manage your pain or look into procedures if that road is chosen/suggested.


With or without a 'positive' MRI scan for vascular compression, it is disappointing that folk don't consider their neck more as the cause of their TN.

There are many coexisting complaints that are connected to TN as demonstrated by research,

Occipital neuralgia, migraine, and TN have all been shown to be connected in many cases as have autoimmune/ connective tissue disorders which many suffer in conjunction to TN and also have a neck implication in many cases particularly of note rheumatoid arthritis.

A relatively cheap 'find out' ; pressing on the structures of the neck self/ or preferably by a therapist aggravating/ relieving symptoms, postural changes to symptoms, stress related symptoms, diagnostic cervical blocks, daily changes in pain patterns, symptoms indicating connective tissue issues Though not 100% conclusive an indication worth pursuing prior to constant meds/ destructive surgeries. Cheaper still, there are possible self help exercises/ lifestyle changes which can benefit.

Medical insurance can often distance you from these answers.

Wishing everyone better times.

I understand your frustrations completely every time I had a test done I WANTED them to find something so badly so I would finally have an exact answer. Its so frustrating when the test come back with nothing wrong but on the other hand I guess we should be greatful. Its a catch 22. I know how you are feeling…its so hard. I gave learned recently just the past couple of weeks just to remain positive as you can…easier said then done. Wishing you the best

Yes. I feel the same way.I have TN. MRI is Monday . I am so sad if they don't fiND any thing. Pain in head and on right side of face. Constant pain in right eye.

I just had a MRI. Came back normal. Still don't know why I have headaches on the right side of head. What a waist of money. I am so sad. Does the MRI show everything ?Why do I have TN and nothing showed up. Maybe it's not tn. Maybe the docs were wrong. So confused.

It doesn't always show on an MRI or an MRA. Tell your doctor you talked to others and you are interested in trying medications. Gabapentin and Amitriptyline have been life saver for me. I am 2400 mg of Gaba and 50 of the Ama. Miracle drugs for me. It took a while to work, but I live most days with just a few pain attacks, and they are not as intense or as long as they were before the meds. I feel so bad for you. I know how horrible the pain is. It is hell. I wanted my dentist to pull out all the teeth on my right side. I was in so much pain. I cried when he told me that my teeth were perfect and he couldn't pull them. He made me call my GP right then and they set up an appointment for me immediately.

Even the best resolution and contrast possible (FIESTA Angiography) doesn't always show all vascular compressions. These procedures are best regarded as means of eliminating dangerous conditions like arterio-vascular malformations, benign tumors, and aneurisms near the Trigeminal nerve. Miss M is quite correct that response to medication is a more reliable indicator for the diagnosis. Tegretol and Trileptal are also on the list of medications which often help, and for which a positive reduction of pain can be an indicator for the diagnosis. Knowing that you are sensitive to Tegretol, you still might be able to taper it up slowly and get acclimated as you do. If you're having prolonged "headaches" on one side, rather than sharp electric-shock stabs, or 24-7 burning, throbbing pain, another discriminator drug that could be tried is Indocin, which is often helpful in migraine and some other forms of Cephalgia.

Regards, Red

Jean said:

I just had a MRI. Came back normal. Still don't know why I have headaches on the right side of head. What a waist of money. I am so sad. Does the MRI show everything ?Why do I have TN and nothing showed up. Maybe it's not tn. Maybe the docs were wrong. So confused.

I was diagnosed with TN .shooting pain on right side of face.It feels like a knife.. While I am typing this I am holding my head. Still don't know why . Sometimes stabbing pain on chin and it feels like my right eye is going to jump out from the pain

My headaches are on the right side of head. It's not a migraine. Hopefully my new doctor can figure this out.

What is going on with pain in right ear?? Sorry I am new on this page. Thanks for your input.

Deep, stabbing pain in the ear can be associated with a different form of neuralgia: nervus intermedius of "Geniculate" neuralgia is sometimes treated by applying MVD to this nerve branch which stretches between two other primary Cranial nerves. It is a difficult operation and even doctors who regularly do MVD on the 5th cranial nerve near the brainstem, may hesitate to try it.

My MRI came back with nothing showing. The Neuro said I have a very healthy brain, which at 63 I am happy. Neuro said mine probably caused by virus. I am in the best shape of my life at this time and can't believe that this has happened to me! I can live with my pain at this time with no meds only acupuncture but I always have the thought when will it get worse. I still am in denial of what I have, I am very stubborn. You are not crazy just look at this forum and see how many new people sign up every day! The problem is it is something no one can see and unfortunately only you feel the pain.

I am 25, ATN pain started Nov 2014, I didn't get a diagnosis till Feb 2015, and it almost killed me from stress and lack of sleep. Even with having tried almost all the medications and finally finding a good mix in Oct 2015 I have not had a totally pain free day since I woke up in pain a year and a half ago. My first MRI was in April last year. It came out 100% clean. I went out to my car and called my mom. I cried for over half an hour. I REALLY was hoping for a small brain tumor or aneurysm that could be fixed quickly with surgery. I am sure most people don't have a breakdown when they learn they DON'T have a brain tumor, but the clean scan meant there was no known way to fix this, and it would likely be life long. Sitting in my car with no working medication, and no high success surgeries recommended it felt like a death sentence. Even if I didn't die, that was the first time it sunk in that my entire life would be different now, forever. It is big, and scary, and I still don't deal well with it many days. A clean scan doesn't mean the pain isn't real, it just means the machine can't see the problem, which in many of us it doesn't. Docs don't like things they can't see, it scares them too. Good luck finding treatments and convincing Doctors of what you need. Don't be afraid to push them a bit, or find an advocate that can do it for you when you can't. *hugs*

I am nervous to be told the same result. I have my MRI and MRA on friday. I am 28. This came out of nowhere just over 3 weeks ago.I have seen my doctor who initially diagnosed me after the dentist cleared me. The pain just kept getting worse where I would be crippled over in pain and crying.So I went to the ER and because it was the same network the ER doctor basically walked in and said I agree with your Doctor here is a different medication have a nice night. Seriously? I was fed up and went to a neurologist who set me up with my tests on friday. I am left very frustrated. I come on here and only one person will talk to me.

Hi Sid,

Sorry you have not gotten a great response yet. The best way to get some conversations going on here is to post a Discussion introducing yourself and asking your questions. Good luck with your tests, even if it comes back blank, this is real, and this is hard to deal with, but I believe you are up to the challenge.

-Erika, 25 yr old, 18 months with TN

Hi i also had severe pain behind my eye so i understand. In my first mri they found nothing on my second they did find compressions on both sides I thought i would be relived knowing that but im not. Im on nortriptyline 75 mg a day which keep alot of my pain away. To actually go through the surgery with atypical pain …ive read i dont have a great chance. Its a major surgery to me if they have to cut out part of my skull …not sure its a risk im willing to take. If you think you would want to go through with that surgery try gettin a better mri 3tesla or feista mri