HI EVERYONE,
sis had her MRI to determine if she truly has TN. i spoke to her and she is about Lose her mind. MRI WAS NEGATIVE to TN! WHAT COULD IT BE WHEN ALL SYMPTOMS POINT TO TN??? HELP PLEASE TALK TO ME SOMEONE ANYONE. SHE IS STILL KEEPING APPOINTMENT WITH NEUROLOGIST.
I don’t think that’s uncommon, based on what I’ve read here. The definitive diagnosis of TN is typically made based on a positive response to one of the medications usually prescribed for TN.
Is your sister already taking medication? If so, is it helping?
oh Jeff, thanks for your response. Facts, short story her daughter-in-law said it sounds to me like TN as a women in an office spoke about her pain and why she was at the doctor that day. My sis was so overwhelmed, she just knew she finally had a diagnosis. my sisters son works as a PA (ortho), he spoke to my sisters PCP and a friend that is a neurosurgeon as a team they did put her on tegratol 100 mgs to start, then 200 mgs and scheduled her for the MRI so she was ahead of the game when she goes for her appointment the end of this month, (Neurosurgeon). yes to answer your question, she cried that the medicine was starting to ease the pain, not gone but better. what do ya think Jeff? She has been so ill for over 2 yrs. No one could identify it.
thanks
Deborah
Many (most?) people have pain for quite a while before diagnosis. In part I think that’s because the pain level/frequency is progressive, so what starts out as a periodic “what’s wrong with my teeth/jaw/etc” feeling eventually becomes so pronounced that people are more assertive in terms of seeking medical care. Unfortunately many people still don’t get diagnosed properly at the onset, and either go through unnecessary dental procedures or are prescribed the wrong medications.
I feel fortunate that when my TN finally reared its ugly head so strongly that I could no longer stand it, the first doctor I saw was aware of TN and put me on gabapentin right away. I subsequently tried various other medications because I didn’t like the side effects of gabapentin, but I eventually went back to the gabapentin because I disliked the side effects of the other medications even more!
I would say that if you sister can tolerate the Tegretol and it minimizes the pain, I would trust the TN diagnosis. I guess I should add on to my previous post that in addition to the positive response to medication, a competent doctor will also take history and do a basic neurological evaluation in order to rule other other possible problems. Seeing something on an MRI is not necessary to confirm a TN diagnosis.
In my experience, medications only minimize the pain; they do not entirely eliminate it. The pain is minimized to almost 0 but on occasion I can still tell there is something wrong. Then again, I hate the side effects so much that I take the lowest possible effective dose. Maybe I’d be entirely pain free with a higher dose.
I may be wrong, but I think that surgery for TN is typically only performed on people for whom medication is not working.
Ty Jeff. May I ask for Sis did TN show up on your MRI, if you had one??? Sis is picking my brain.
ty
Deborah
i didn’t have an MRI. My doctor didn’t recommend one, and given that a very low dose of medication is alleviating 95%+ of my pain I don’t feel the need to ask for one at this time.
Hi helpsis,
MRI is used more to rule out other causes such as MS or a tumour. It is not generally used to diagnose TN. I am glad that she has been referred to a neurologist. It sounds like her DR is taking all of the proper steps towards a diagnosis and treatment. I don’t know where you are located but you might want to research facial pain specialist/neurologists close to you or some teaching hospitals have facial pain clinics. Most general neurologists do not have a lot of experience with this and we need to search high and low for proper help. She is on the right track though.
Many, if not most, of us TNers have clear MRI’s. I have had TN on and off for over ten years and every single test I have comes back normal. Unfortunately it is fairly common for it to take years for a diagnosis as it is so hard to identify and find help.
Sometimes a compression of the trigeminal nerve will show up on an MRI but most times it does not. That doesn’t mean that there isn’t one though. MRI is not the best tool to look for that and often times a compression isn’t found until surgery is underway. And compression is not the only cause of TN. Many times we never find out exactly why.
Diagnosis of TN is usually made by ruling out other causes of pain, your clinical symptoms and history as well as your reaction to medication. If Tegretol is helping then that is a clear indication that her pain is neurological.
Jane
Hello,
I had an MRI before I was diagnosed with TN. The neurologist said nothing about TN at that point. I don’t think an MRI is used as a diagnostic unless MS is involved? Not sure but the same neurologist treats me for TN and never said a word about my MRI. I believe the most common diagnostic is simply symptoms. Maybe research more but if the medication works then I would take it and maybe get a second opinion.
hi cj,
thank you for your reply, i am kinda getting the same from a few, thank so much for your input it is appreciated.
deborah
A lot of MRI show nothing. It is diagnosed by how meds work, symptoms, and lack of evidence on MRIs. Good news is that MRI came up negative then that means no MS. Which TN can be the first symptom of MS. Deep breaths. There is some positives in negative MRIs.
Hi thank you,
i am trying to gather as much info as i can. this is good news.
hope this finds you well.
Deborah
My husband has TN2A and it has never shown on an MRI. He had an MVD and it confirmed the diagnosis. He had much relief from the MVD in April 2014, but symptoms are worsening again. Scheduled for oral surgery tomorrow (has an absess) and we are hoping that is the source of the recent increase in pain.
LeeAnn,
Thanks so much for your reply. I am learning with each reply.
I am not sure what TN2A is. My sis has had some success so far with tegratol but she did not have a good day yesterday. She was given this med by her PCP until she goes to her Neurosurgeon this Thursday.
Hope all goes well with hubby, prayers to him.
Deborah
Mine didn’t show it but had all symptoms. Had some kind of an mri before my MVD surgery with the markers on my head and forehead. You keep your sis with you if you can because it takes persistence and she needs you as an advocate. Hope you get the help you need.
Jeff this is an awesome response to helpsis. You are spot on
I thought I had TN. First MD I saw regarding it “confirmed” and Rx some Oxy and something else for nerve pain - I can’t remember what it was. Had a follow up a few days later with another MD at the same practice. He said it sounded like cluster headaches and Rx Verapamil, 80 tid. That was on a Tuesday afternoon. I took the first dose of Verapamil that evening and … gone. That was a year ago. I’m off Verapamil and no more clusters. You might ask for an Rx for that and give it a try. I did have MRI and CT later which were both negative. Verapamil is worth a try - it will lower your BP but it was surely worth it.
Thank you for your reply. I know tomorrow she see the NS for the first time. Hopefully he will be able to shed some light.
He come highly recommended??
So happy to hear you found the help you needed.
Deborah
Just asking have they checked for fibromialgia as they thought i had this then mri confirmed trigeminal neuralgia type 1 and 2 both sides of face and all three branches of face and migraines.
Thought this may help you can only ask
Hi Susan 12,
thanks for your response.
how do you check for fibro?? I have it and was diagnosed by Dr. touching painful trigger points. To answer your question about sis, no they have not check for it. her MRI didn’t show anything. Her neurosurgeon said it was occipital nerve. This is so frustrating. We don’t know? she is just going from Doc. to Doc. These are to be reputable Doctors? She will be going to a neurologist then to a pain clinic for nerve block. The tegratol seems to be helping, 200 mg.
We just don’t know yet.
We are lost and at the mercy of the Docs she is going to.
Did you get treated for you TN 1 and 2? Hope you are feeling better.
thanks
Deborah
Hi
Um just had mvd on left side of brain that fixed stabbing but not the rest 1200 mg oxycarbazine and anti depressents have to get right side done but they have to get migraines under control first
Just like your sis it took 12 to 18 times to hospital then three months later neurologist found both compressions
Even if you cant see no compression the trigeminal nerve could have lost its sheath which is the outer covering of her trigeminal nerve itself so neurologist can sort that out or see a neurosurgeon please keep in contact i know how she feels i just went to pain dr this week and they cant help me so now foing to another one hopefully pain dr can help her
Kind thought susan