Hello, I have had a MRI and MRA, that showed no compression, my neurosurgeon has order a more indepth MRI, and I am afraid that it will show no compression. My question has anyone had no compression found in any testing that they have had done? If so have you had long term relief with just meds or had surgery that has found a compression. I am feeling that maybe it is not TN and something else is wrong or I am "crazy" or can't handle pain. I'm kinda scared that its just me and I'm grabbing at straws. Any answer will help
Thank You
I have the same thing, a fancy $$$ MRI (FIESTA, fast imaging) that showed no compression. Both my neurologist and the neurosurgeon who did my Chiari malformation surgery 7 years ago said that it is not unusual to not see any compression and when they open you up, they find some. I am meeting with a local neurosurgeon who does MVDs (plan to grill him on number, outcomes, complications) on Monday to find out more about this lack of compression on the MRI. I am also getting a second opinion in a large city where there is a chance of more MVDs being done. I truly want this surgery to get rid of this pain for good and get off these mind-numbing, sleep inducing, balance wobbling drugs! I will let you know what they say. Meantime, keep the faith and I hope you have a pain free day,
Mollycule
I had 2 MRI's that didn't show any compression ... my biggest fear was them opening me up and not finding anything .. but sure enough when they did open me up they were able to see a blood vessel compressing the nerve.. but from what
I also understand it's very common to not see any compression from an MRI. I had my MVD surgery just over 2 years ago .. I've been on and off of carbamezapine and gabapentin and I still have pain ... now have pain on the otherside. I meet with a new Neurosurgeon tomorrow hopefully for some answers. We all know this pain is the worst ever ... wishing you the best !!
I've had multiple MRIs and CT scans over the last decade or so, and an MRA to look for aneurysm. No sign of compression, but I still have TN according to my dentist, oral surgeon, and neurologist. Sometimes TN is not caused by vascular compression.
I thought I was crazy at first too, but the pain is undeniable if you stop to think about it. How do you handle more routine pain? Do you overreact when you stub your toe, or are your other pain responses normal?
As an example: TN pain drives me to extremes. However, after an incident involving me and an 1100 pound heifer that left me with several broken ribs and a dislocated elbow, I was able to get up and finish chasing cows around the pasture. I didn't even bother to go to the doctor until I was done with work... the next day. I screamed for a month every time I bent over to pick something up, but didn't even need pain pills. I can know that I'm not just being a wimp because I tolerate pain just fine in other contexts.
If your doc is like mine, you'll get a great chance to test this out when s/he schedules you for your first lumbar puncture to test spinal fluids for other possible causes.
I got ordered another MRI today too the one that suposed to show compressions im scared of the same thing …then what if they dont see them…
I have had TN for three and a half years. I had an MRI and it showed no compressions. But on September 12th my neurosurgeon went in on my left side and roughed up the nerve, like put cuts in it...with the idea that it would get rid of the pain. It did and I'm completely off all medication. He says he's the only one in the country who does that kind of surgery.
Whhattt? Never heard of that
What? Me neither. Cutting the trigeminal nerve and "roughing it up"? Sounds sketchy to me unless it is some new fangled way to stop the pain, but sounds like you'd get more pain????
Thanks for your response, I think I handle pain well, I’m not one to take pain meds, I have 3 different pain meds that my neuro gave me in July and still have them I think I might have taken about 10 pills since getting them filled July 25th, I'm kind of scared of them more so then the pain I don't want to be an addict so I only take one when it gets so bad that I start to feel like I'm at my breaking point. I once drove 6 hours with a kidney stone attack thinking it was just a back ache, when I got home I realized that it was more and went to the ER and was admitted to the hospital for 4 days till they pasts. I talk myself through the pain. I'm just afraid that the doctors think nothing is wrong if they don't see anything and the pain gets worse and I can't talk me self through then what is going to happen.
Tina S said:
I've had multiple MRIs and CT scans over the last decade or so, and an MRA to look for aneurysm. No sign of compression, but I still have TN according to , oral surgeon, and neurologist. Sometimes TN is not caused by vascular compression.
I thought I was crazy at first too, but the pain is undeniable if you stop to think about it. How do you handle more routine pain? Do you overreact when you stub your toe, or are your other pain responses normal?
As an example: TN pain drives me to extremes. However, after an incident involving me and an 1100 pound heifer that left me with several broken ribs and a dislocated elbow, I was able to get up and finish chasing cows around the pasture. I didn't even bother to go to the doctor until I was done with work... the next day. I screamed for a month every time I bent over to pick something up, but didn't even need pain pills. I can know that I'm not just being a wimp because I tolerate pain just fine in other contexts.
If your doc is like mine, you'll get a great chance to test this out when s/he schedules you for your first lumbar puncture to test spinal fluids for other possible causes.
Well, there you have it, you aren't crazy and you know you can handle pain just fine. Remember that, because you'll undermine your care if you forget it.
There is a chance that you'll have to deal with unsupportive doctors, and some of them might think you are faking it for pain meds.
As my doc told me, there are multiple causes of TN, and some of them leave very little evidence or possibly none at all. Compression of the nerve is always the first thing to look for, but MS and autoimmune diseases can also cause demyelination (and the lesions can be very small). He ordered lumbar punctures to look for that and evidence of infections that can cross the blood-brain barrier (advanced syphilis is an example). Heck, a relative on my husband's side was diagnosed with TN and it turned out that she had cancer that spread to her brain (very rare) and evenutally killed her.
My personal belief is that there isn't a one-size-fits-all answer, and surgery should be approached with great caution because of the potential complications. That said, they might find something if you let them cut you open.
Talk to your doctor about your medication concerns and follow whatever directions you get. I've had TN symptoms for around 12 years now, never had surgery, and manage my pain with medication when I have relapses. It's not possible for all people, but it might be for you too. Most of the drugs take time to work, so you have to take them on a schedule.
I really know what you're feeling, I found this site and joined today because my remission seems to be ending and I have no idea how I'm going to make it through again. But we will survive it somehow.
Heather said:
Thanks for your response, I think I handle pain well, I’m not one to take pain meds, I have 3 different pain meds that my neuro gave me in July and still have them I think I might have taken about 10 pills since getting them filled July 25th, I'm kind of scared of them more so then the pain I don't want to be an addict so I only take one when it gets so bad that I start to feel like I'm at my breaking point. I once drove 6 hours with a kidney stone attack thinking it was just a back ache, when I got home I realized that it was more and went to the ER and was admitted to the hospital for 4 days till they pasts. I talk myself through the pain. I'm just afraid that the doctors think nothing is wrong if they don't see anything and the pain gets worse and I can't talk me self through then what is going to happen.
Tina S said:
I've had multiple MRIs and CT scans over the last decade or so, and an MRA to look for aneurysm. No sign of compression, but I still have TN according to , oral surgeon, and neurologist. Sometimes TN is not caused by vascular compression.
I thought I was crazy at first too, but the pain is undeniable if you stop to think about it. How do you handle more routine pain? Do you overreact when you stub your toe, or are your other pain responses normal?
As an example: TN pain drives me to extremes. However, after an incident involving me and an 1100 pound heifer that left me with several broken ribs and a dislocated elbow, I was able to get up and finish chasing cows around the pasture. I didn't even bother to go to the doctor until I was done with work... the next day. I screamed for a month every time I bent over to pick something up, but didn't even need pain pills. I can know that I'm not just being a wimp because I tolerate pain just fine in other contexts.
If your doc is like mine, you'll get a great chance to test this out when s/he schedules you for your first lumbar puncture to test spinal fluids for other possible causes.
As promised, I got back from my consultation with a neurosurgeon (who, by the way has done a whopping 6 MVDs), and he said that of these 6, 3 showed nothing on the MRI, but clearly had compression of the nerve. He also said 2 of his patients became deaf in the ear on the surgical side. I am meeting with two other neurosurgeons recommended on this site in the next few weeks. Wish me luck. Six was not an adequate number for me!
Heather, I have TN. They said they found no compression on me either. To help I was given a Gamma Knife treatment in 2000. It worked for 10 yrs. Then the pain returned. So they gave me a CyberKnife treatment, which is suppose to be a newer version similar to GK. Both are radiation of the T nerve to kill the pain. Ever since the CK I have had lot of facial pain (possibly neuropathy - nerve damage pain. I also have episodes of TN pain, although its not as bad as before the treatment. I live on 900 mg. Trileptal, 225 mg Lyrica. Plus, half my face is numb from the treatment. Some days are good. Go for 4 or 5 days like that. Then it all comes back for 3 or 4 days. All this even though I had the CK treatment and taking the meds daily. I saw another neurosurgeon in Pa. He told me the T nerve had "shrunk" from the radiation treatments and he saw no compression and he could do me no good. If he had seen compression he would have considered the MVD. The MRI he had done showed compression on the OTHER side. But there is NO pain on that side. Go figure!! Even though there was compression showing on that side,there was no reason to do surgery since no pain was there. I am totatlly perplexed. So.....yes. I had no compression showing yet I have TN. I was told by the Pa. surgeon some surgeons believe in and recommend the GK or CK and some believe in the MVD. He did NOT believe in the GK or CK as a good alternative. My local surgeon believes just the opposite because it is "less invasive". Either way, I was told there is no guarantee. My local neurologist said that after an MVD the pain "can" come back. And sometimes an MVD simply does not work. I know of 3 people that it DID work for. They were elated. But, from all I've read it "can" return. Time will tell on those folks. I also know of one that had MVD and it did NOT work. My opinion, personally, is there simply has not been enough research in this disorder to find a 100% effective treatment. As is cancer, diabetes, etc etc. I have come to the non-critical summation that the drs and surgeons just do the best they can. Some believe one way (MVD), some believe the other (GK or CK)). I at least can function and can go on with my life. I just put up with heavy meds, days of barely tollerable pain, and go on. There are many times when I'm having ongoing pain and electricity running through my "numb" face when I wish I'd never heard of the CK and had an MVD-believing surgeon and had the MVD instead. I don't know. I just don't know. Jimmy