MRI and diagnosis - soooo confusing!

This is so weird. Hopefully, someone can explain this to me. I was shown my MRI by the ns in oregon. He showed me on this special 3D view on his laptop the point at which the artery was resting on the trigeminal nerve. I requested the radiologist’s report, and when I got it today, it said "there was no evidence of of structural lesion identified along the course of the left trigeminal nerve to explain the patient’s symptoms. The left superior cerebellar artery courses jus above the root entry zone of the left trigeminal nerve. " Now, I don’t know where the superior cerebellar artery is; but, the fact that I read there was no evidence of tn leads me to wonder what both of the
ns were seeing, and why did both radiologists’ reports say there was nothing. I don’t understand what I’m missing.

Also, has anyone had tooth pain on the opposite side of the facial pain? is that possible to have it be part of tn? I’ve had two root canals and one surgery on a tooth that still has a great deal of pain. The dentists and endodontists were unable to find a crack in the tooth despite many xrays and visualization during surgery. They are all talking about extracting the tooth. But, I don’t want to do that if the problem isn’t a tooth. I think I may have read about a dentist that specialized in TN? Anyone know of that? The pain was so intense today when I bit a small crumb that my top molar has been hurting as well. Can the tingling, burning and numbness travel from the top lip to the bottom lip? chin?

Left a message for ns to call next week to explain. I know, lots of questions above, but now, I feel like a malingerer. Maybe it’s really all in my head??? I feel crazy…

The artery resting on the nerve is TN… Sometimes , more rare it’s a lesion .

Don’t pull any more teeth

Get a new NS. That has done hundreds of MVDs…even , especially if you can leave your state.

You don’t have to see it on film to get MVD,!

My tragedy started when going under , for wisdom tooth procedure… 4 hours later, I had TN on the OPPOSITE side of where he dug and pulled. To the best of my knowledge, while I was under, he gave me whiplash, to a gun that was already loaded, on my nerve.

TN is a mystery, and only top 10 NS with YEARS of MVD. Are woth a damn!
I got lucky. Don’t stop researching till you get what you need!

Wow! that’s a terrible story. I’m so sorry. Thank you so much for responding. You seem to have a true handle on the reality of the situation. I will email the dr in Michigan that you mentioned. when you emailed him, did you also attach the reports? Have a good evening!

Thank you for the referral. I looked him up. He’s a retired periodontist turned dental malpractice lawyer on Bush st. San Francisco. Is that the right one?

Camia,

The radiologist who interpreted your imagery needs to be retrained in assessment of facial pain. Detectable lesion on the trigeminal nerve isn't required for the pain to emerge. The overlay and contact of any artery or vein on the nerve in the region near its emergence from the brain stem can be enough. Confounding this picture, however, is the reality that many more people will have such a contact but not display TN symptoms. One rather dated post-mortem study in Rochester NY suggested that up to half of all people in that vicinity have detectable compressions of the trigeminal nerve, but only a tiny fraction of those will display TN symptoms.

Because of effects like these, one of the more reliable diagnostic measures is to administer a short course of either an anti-seizure med or one of the tri-cyclic antidepressant meds. If the patient shows improvement in pain within a week, that's considered a strong indicator for some form of neuralgia (nerve inflammation).

When we did a general demographic study at Living With TN a couple of years ago, we learned that perhaps a fifth of all our members have bilateral pain. As far as I know, there is no accepted medical evidence that root canal on one side can directly cause TN pain on the other. But there are qualifications for this observation. During root canal, the jaw can become hyper-extended, exerting a pulling tension somewhat analogous to whip lash on the nerves which exit both sides of the brain stem. If you already have a blood vessel in close proximity to the nerve, it's at least plausible that hyper-extension could bring it into closer contact, affecting the other side of your face. Note: at this stage of research, mine is a plausible surmise, not an accepted medical "fact".

The trigeminal nerve has three main branches in the face. When pain seems to "travel" between the areas you have identified, the most plausible mechanism is that the site of compression has slightly shifted or broadened, in the segments of the nerve which are closest to the central nervous system, "above" or "behind" the ganglion where the three branches spread out to the face. This kind of shifting around is quite common in trigeminal nerve pain.

Go in Peace and Power,

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

Thank you, Red. Your input and explanation are very helpful. I think they focused on the left nerve during the most recent MRI. According to the ns, he was going to have this VERY specialized radiologist read the results. She was touted to be a leader in looking at the fifth (trigeminal) nerve on these very state of the art mri s. However, I don’t see her name anywhere on the report.

I have tried anticonvulsants and tri-cyclic depression meds. I got some relief with tegretol, but could not tolerate the side effect of being extremely fatigued and falling asleep on the job. Lamictal has been helpful in reducing the intensity, but that was inconsistent with increasing break throughs of flare ups that were increasing. Did nothing for the lip numbness. I have been titrating off the lamictal, again because of side effects (increased anxiety and irritability, tremors in hands, and other effects). Since decreasing it, I have noticed an increase in symptoms and have had a couple of flare ups. Many (5 or 6) neurologists have closed their files on me and wished me luck because of my failure to tolerate side effects of any of the meds. However, given that there was some significant reduction in severity and number of flare-ups, I think it is likely that I have tn. The third ns is highly convinced of it, and suggested that my cluster headaches which have increased over the past few years are really tn.

thank you again for your insights. Have a good day

I had 2 MRI/MRAs done and both times, the radiologist said nothing was found. I then saw 2 neurosurgeons here locally and only one said he just saw something suspicious. Then I consulted with Dr. Casey in Michigan (the same NS that KC Dancer used) and he saw two compressions clearly and even showed me. One was obviously twisted around the nerve. I then had my MVD done by this surgeon and just as he saw on the MRA, one artery was compressing and the other was compressing and twisted around the nerve. TN is very rare and as quickly as radiologist look at MRIs, I can believe that they would miss many if not most. It take the eyes of a very experienced, seasoned surgeon in TN to see that. And then even sometimes, it cannot be seen.


I respectfully disagree with your comment that only neurosurgeons that have years of practice, and have done a lot of MVDs are worth a dam. My first neurosurgeon had a very limited TN patient base, as I had my surgery at the local Veteran's hospital, which is not a public hospital. He did only 25 MVDs a year, but I have had no pain along my V3 branch in 4 years. When he moved out of state, I requested a neurosurgeon at OHSU, that has only been in practice for 18 months. Because he was newly trained, he is up on all the latest surgical techniques. I no longer have pain along my V2 branch, and the pain along my V1 branch has been greatly reduced, though not totally gone, as to totally remove the pain, would also numb the tear glands, and put the sight in my eye at risk. I have heard a lot of stories of people that went to neurosurgeons based on the reputation you mention, and had horrible outcomes. One of the well known TN neurosurgeons, that I hear the most complaints about is right in my home town. He is my neurosurgeon's boss. Reputation, and time in practice does not always mean good outcomes, just as a short time in practice, and limited MVD experience will mean a bad outcome. I am living proof of this.

Kc Dancer Kc said:

The artery resting on the nerve is TN..... Sometimes , more rare it's a lesion .

Don't pull any more teeth

Get a new NS. That has done hundreds of MVDs.....even , especially if you can leave your state.

You don't have to see it on film to get MVD,!

My tragedy started when going under , for wisdom tooth procedure..... 4 hours later, I had TN on the OPPOSITE side of where he dug and pulled. To the best of my knowledge, while I was under, he gave me whiplash, to a gun that was already loaded, on my nerve.

TN is a mystery, and only top 10 NS with YEARS of MVD. Are woth a damn!
I got lucky. Don't stop researching till you get what you need!

Kc, Camia went to a well known TN neurosurgeon. The same one I mentioned I would not go to due to all the complaints, I have heard about him. This totally shoots down the only go to the well known TN neurosurgeons for the best care ideal.

I have had TN for almost 40 years and have gone through hell and back while trying everything. It is still here and still hell most days. I show more small lesions each time a MRI is taken and I wonder if others have this issue? Does TN cause lesions? Anyone else dealing with this issue?

Hi Camia. There is a dentist that specializes in TN. It’s Dr Graff-Radford in Los Angeles at Cedars Sinai. I have an appt. with him May. I’m really hoping he can help me. Good luck.

You are not crazy Camia. When you get the pain under control you won’t feel crazy. Don’t have any more extractions. I was ready to have my 2nd extraction when I went to my doctor for something to control the pain so I could back to the dentist. She diagnosed me. I want my health tooth back that was extracted.