I had a MRI today both with and without contrast my question is if they don't find anything on it does that mean I don't have TN? I have all the symptoms and have been diagnosed by both my pcm doctor and neurologist but just trying to figure out if the MRI shows nothing what does that mean for my treatment?
My MRI showed nothing, so for me it is just treatment with medication. I resisted the meds for a long time, but they weren't as bad as I thought. Many people on this site have stated that nothing showed on their MRI, and when they had the MVD sugery compressions were found. I have also learned on this site that there is another type of MRI, maybe someone else can help me with the name, but it's kind of like a 3D MRI that shows more than an average MRI (FIESTA MRI maybe?).
It has been said on this site that if your pain responds favorabley to the seizure meds, then it is probaly Trigeminal Neuralgia. I know you want answers, but an MRI that shows nothing can also be thought of as a good thing!
I wish you pain free days and the answers that you are looking for. Let me know if I can help. Catherine
I used one of the top surgeons in the world
He does not do MRI with contrast
He only goes by patient story and symptoms
He found 2 compressions while in my head 10 months ago
Now - pain free
Ok well that makes more sense to me I was just worried that if they found nothing on the MRI that they would stop treating me and then I would be left in serious pain!! Thanks for the responses guys I appreciate it :)
Hi Shindig, what did your spinal tap reveal? And why was it a terrible experience?
I have to go for one too.
Bella
Okay, thanks, same list for me I think.
Thanks for tip on headache. Advance knowledge good.
Most MRI's won't show a compression. The MRI is done mainly to see if you have a tumor or MS causing your problems. Even the really expensive FIESTA MRI doesn't show compressions very often.
I’m getting one because I had a hemifacial spasm during neurologist appointment last week. (And another on the way home). So now involvement of V, IX, VII. All present pain began over three years ago with deep piercing/ pulsing pain in ear, then smashing headache, then ear/ sinus infections. I live in the woods, checking out Lyme disease (which politically and medically British Columbia is in total denial about because of tourism ) and fungal disease.
I’ve had three MRIs. One just the generic to rule out tumours, etc. second a year ago, FLAIR, showed pathology, FIESTA in January (at a different institution) showed no pathology, which my neurologist thinks is very strange…
I’ve had head CTs, a barium swallow, a gamma camera scan…
It’s exhausting. I’m not “up” for it.
i had an mri with and without contrast. it showed a compression on my left side but the pain is on the right.
Oh they say that contrast dye does nothing but I felt it immediately like warm water flooding into my mouth. Sorry you got lightheaded. Do you have any results yet? The thalamus is pretty major.
Oh it’s all so weird! Do they think its a cross-over thing ( sorry for such medically poor syntax! I know the right word but it is temporarily unavailable in my s-l-o-w drugged brain :)br/>
Cookster said:
i had an mri with and without contrast. it showed a compression on my left side but the pain is on the right.
@ Bella - this is totally anecdotal as a fix for the headache from the lumbar puncture -It comes from boards I followed for MS and it did work for me. Drink a lot of Mountain Dew from the US - the Canadian version has less caffeine - both prior to and after the Lumbar Puncture. You should not have a headache if you do this.
I had my LP for MS diagnosis and I had it done by radiology in a hospital in Ontario. If radiology does the LP they monitor with camera and usually do it in a table that can tilt. If there is any issue in fluid not coming out in a timely fashion they can tilt the table to help with that.
Hope this helps you
my first mri showed nothing...my second which was a 3 tesla showed I have compressions on both sides... If you have compressions a neurosurgeon can do one of the surgeries but i have heard of surgeons who didn't find compressions and still went in to do a mvd I have met people that have had compresions and did not get relief and people who didn't have compressions who did it and got relief. Its really comes down to a coin toss If you have type 1 pain your chances of getting relief are better from the surgeries...You pretty much have to make your own plan of action depending on your specific story of tn
Oh my god, Shindig, I googled that and it sounds just awful awful awful. How do you manage? Let me know how it goes on the 7th. BTW, are you like a cool party shindig, or a kind of cool Japanese Shin something or other.
shindig said:
I go back on the 7th to get the results. I’m really hoping it is the thalamus so I at least have a reason for the pain. Been searching for a year and 5 months. The first MRI showed a lesion they diagnosed as tolosa hunt syndrome after a spinal tap, treated with steroids but the pain never went away, just got worse and spread.
Sounds like the tests are a bit of a coin toss too. Compression on both sides, jstarggrl, brutal.
jstagrl29 said:
my first mri showed nothing…my second which was a 3 tesla showed I have compressions on both sides… If you have compressions a neurosurgeon can do one of the surgeries but i have heard of surgeons who didn’t find compressions and still went in to do a mvd I have met people that have had compresions and did not get relief and people who didn’t have compressions who did it and got relief. Its really comes down to a coin toss If you have type 1 pain your chances of getting relief are better from the surgeries…You pretty much have to make your own plan of action depending on your specific story of tn
Mountain Dew, who knew! Thanks for the tip, Quest. My neurologist told me I can have the spinal tap done by imagining only if there is a failure first. I had an epidural when my first daughter was born, it must be a bit like that…but at least now I won’t be in labour!
So you have MS?/>
Quest said:
@ Bella - this is totally anecdotal as a fix for the headache from the lumbar puncture -It comes from boards I followed for MS and it did work for me. Drink a lot of Mountain Dew from the US - the Canadian version has less caffeine - both prior to and after the Lumbar Puncture. You should not have a headache if you do this.
I had my LP for MS diagnosis and I had it done by radiology in a hospital in Ontario. If radiology does the LP they monitor with camera and usually do it in a table that can tilt. If there is any issue in fluid not coming out in a timely fashion they can tilt the table to help with that.
Hope this helps you
I was happy I tried the Mountain Dew but will admit to doing it with some skepticism. In the end it worked. I am sorry your neurologist cannot arrange for an easier LP for you.
Yes I have MS. The TN came along with or as a result of the MS.
Honestly, I can’t take sugar or anything carbonated anyway, immediate trigger! But I could try coffee, something I don’t usually drink either.
So I see that you’ve run the gamut of pain meds. So sorry about the MS and that the meds have all failed. Hope meditation is working for you. Is it mindfulness, or single object…?
I have a very quiet graphite drawing practice that is like meditation. I hold my focus and allow thoughts to rise and fall and when i can stay on this track pain falls into the background. don’t know what I’ do without it. I am not “good” at sitting meditation:).
I am going to talk to my GP before submitting to the LP.
I was looking for the original posting to find out how much was before and after and found a number of other people who posted closer to this year had switched out coffee and lots of water before and after with some success. I hope this works for you.
The meditation works during the day. It is mindfulness based. Dr. Jackie Gardner Nix has worked mindfulness and pain control into her model. She has a book that can walk you through her method. I found that taking her classes was a great way to find the parts that worked for me and to use them. And she advocates movement based meditation for those who can’t sit 
And apologies to hcshmily for veering off topic. I would encourage you strongly to find the doctor who will work with you on this. The MRI is not the definitive answer as to whether or not you have TN.
Same thing with me. MRI and MRA several times over showed up normal. My TN started January 14, 2008 the day my son was born. Don't know if it was due to the epidural from my 4th c-section but that is another story. My life changed at age 36.
I was at a loss and I went to endcronologists, ents, maxofacials then to nuerologists who gave me pills, pills and shots in my head and neck. Dr after Dr and they all told me the same thing because I did not have the "triggers of TN". I did not have it. I went to a neuro surgeon and took my MRI and MRA and he empathized with me and said they did not see anything. Frustrated!!!
Finally, I found a dr who explained, educated me and gave me a diagnosis and my TN was Asymptomatic...stayed consistent with Dr. Charles Pomeneye, Nuerologists in Sugar Land, Texas. We tried kepra ivs, kepra pills, steroids, lyrica, triliptal, cymbalta, creams, gandualar procedures with pain specialist etc.
Finally, with the last ER visit for morphin because of pain and flare up, he said it was time for me to see a neurosureon. That's when I met my Super Hero and my husbands and boys hero too....Dr. Robert Pharrish, Nuerosurgeon from The Methodist Hospital in Houston, Texas.
I did the MVD (microvascular decompression) on November 2010. My trigimenal nerve was compressed by my major artery as well as nerves touching my ear. My life has changed! My boys have their momma back and my husband has his fiesty wife back.
It took all of 2011 for me to fully recooperate from surgery due to an infection (only 3% and I happend to be in the 3). Now, 2012 and 2013 I am trying to get my life back little by little! My TN pain leval was 9-10 before surgery sometimes meds help to bring level down. Imediatlely after surgery a 6 or 7. Once swelling went down 3 to 6 months, pain level 4 to 5. Now 0 but I do feel a little pressure. Flare ups can be a 3-5 but with right meds it subsides.
As for ongoing meds, I still take Lyrica 150ml 2x daily only because I am scared to let go. Scared thinking the Crazy Pain will come back but I am ready to start weaning off. I do get flare ups when stressed but no where near what I experienced before.
I am finally speaking out against TN and want to spread hope! Eventhough, it may come back I am trying to cherish my days with my babies and my husband. I thank God for my family and friends who tried to help and little by little I am making my way back into their lives again.
I am free for now and I see a wonderul future with my family and my life.
Isabel Rodriguez
TN Survivor