I’m new to this group. I was given a TN diagnostic 1 year ago. I was recommended to see a Dr. Friedman in Gainesville, FL at Shands Hospital. He is a neurosurgeon. I saw him last week with MRI CDs and reports, nerve tests and an evaluation from my neurologist. He said based on my description of my pain I don’t have TN. I described my pain as throbbing and stabbing pain on the left side of my face, eye, nose stinging and pain and sore teeth pain. It is continuous and can go on for 1 - 4 days. Sleep only helps. I wanted a procedure done but he refused to do it because he didn’t believed I had it. I don’t know what to do now. Start again. Can someone tell me that they have this same pain and what diagnostic you have. What should I do next. My neurologist is with Cleveland Clinic in Florida and recommends for me to have a procedure done. I’m not sure what to do
Perhaps what he meant is that you don’t have a “classic” case of TN. What you are describing sounds more like “Atypical trigeminal neuralgia” (ATN) or “glossopharyngeal neuropathy” (GPN) (sp?). Unfortunately the atypical cases don’t respond nearly as well as the classical cases to neurosurgery. So he may be hesitant for that reason.
Is your neurologist recommending a certain procedure? MVD? Have you tried any medications yet? Do you have any definite compressions or other abnormalities that show up on the MRI?
What Ziggy said…
Atypical TN is a different animal. It’s still technically TN, but the cause usually can’t be determined (typical cases are an irritation or a compression of the nerve which can be identified and corrected). The pain is also slightly different, with more deep, throbbing, constant pain wheras typical TN cases are generally sharp, electrical, zapping attacks, triggered by touch, that in most cases literally stop you in your tracks and there’s nothing you can do.
First course of action would always be to try some of the drugs… I used Gabapentin, which worked wonders. I also had no side effects, but that of course is different for everyone. I have since had an MVD procedure with an internal neurolysis (splitting the nerve) and so far, so good… but its a major operation and you’d be best to try the drugs first, especially if you have atypical TN, as surgery will have a very low chance of helping.
Good luck in your searching…
Red is a good source of information about this stuff. You might try sending him a note to see what he can suggest. Good luck this stuff is a real horror. Don’t let them tell you that you have all this in your head. I had that and is sucks. It’s not in your head it’s for real and there and it hurts. Do try to use drugs first though. But I wouldn’t have the gamma or cyber knife if you ever plan to have MVD. They cause problems when you have MVD procedure.
I had all of these same types of pains and I was diagnosed with TN ~maybe if you went to another Dr. they might say yes it is TN. But with a diganosis or not you want to be pain free.
I believe we have to get to the root cause of our illnesses, not just treat the symptoms blindly.
Please go to a functional medicine doctor or one that does nutritional response testing. A hair analysis is also cheap and showed all the heavy metals in my system causing all my pain!! I had pesticides (specifically Roundup ) alumimun, copper, mercury, nickel and cadnium at all very high levels. So many toxins affect our bodies.
Thank you all for your responses. How do I get in contact with Red? Also I don’t know what my next step should be. Should I go to another neurologist or a neurosurgeon? Any recommendations for South Florida? I can’t take medication because I am having liver problems due to all of the medicine I take. I was recommended to get a procedure done by my neurologist but not by the neurosurgeon. I feel stuck.
Just keep pushing.I have been struggling for almost 2 years now.
If I could get a diagnosis then I could target better what to do.Maybe a moderator could get you in touch with Red.or look through old posts until you see his name and then private message him.Good Luck
I haven’t seen anything on Facebook from Red for a few weeks so perhaps he’s on vacation somewhere. You do seem to sound like me, I have ATN with bouts of TN. My teeth hurt A LOT!!
Red has been on vacation until a couple of days ago.
If you are on Facebook, just type in Red Lawhern and you could possibly get a hold of him there with a message. Are you in any facial pain groups on FB? If not, you can join my TN, ATN, ON Sufferers Group. Red is a member of that group.
You can look up Atypical Trigeminal Neuralgia on Wikipedia. It is an excellent article covering both types of TN. Most of it is written by Red.
Hi. I went to Doctor Friedman and he told me the same thing. I have type 1 and 2 TN. It never goes away. I had an MVD in 2009 and it worked for 3 monrhs. Then it all came back. Get a second opinion. MVDs work for some people with Atypical TN too. Good luck. Cathy
How did you get detoxified and did that then cause your pain to go away?
I’ve had TN2 for 10 years. I have recently found that the lidocaine patch helps relieve my pain, that may be worth trying since you have liver issues. I’m concerned you’re looking for a procedure as your first course of action as over the years my research has kept coming up with the statement that TN procedures are they closest thing to brain surgery without actually cutting the brain (scary!) and the fact that they often don’t work or hold. You may want to consult more about the use of meds before leaping into brain surgery. Also, get yourself a second, third, forth opinion! I live in Ohio so I can’t help you there but I do know you need to find someone who understands TN and TN2 – they can present very differently.
Agree sounds like TN2,that’s what I have.Pain can be days ,weeks months without a remission.