trigeminal nuralgia

[darbyday]

Can anyone please give me any tips in the management of pain from trigeminal nuralgia.I suffer severe long lasting bouts the last one lasted over 4 hours with no relife whatsoever.

[Joyce K Lee, MD]

Dear darbyday:

Thank you for submitting your question.
I will answer your question/ concerns to the best of my abilities, I am limited in not having the opportunity to perform a full neurologic examination on you, nor am I able to review the pertinent imaging.
This is solely for educational purposes and should in no way be a substitute for a formal evaluation by a certified physician.

Regarding managment of TN, there are both medical and surgical options which may be available, depending on the severity of the facial pain, as well as the exact cause of your facial pain. There are a number of medications available for the treatment of TN-related pain, including tegretol, trileptal, neurontin, valproate, and elavil. For severe pain, or pain that does not respond to a single medication, your physician may combine two or even three of these medications together in attempt to limit TN-related facial pain. Over time, it may become evident that medical therapy alone is not providing adequate pain relief or is not limiting the frequency of painful attacks.

With regard to surgical therapy, there are several options available for TN. The surgical treatment of facial pain syndomes, including TN, would be performed by a neurosurgeon experienced with these techniques. Each of the surgical techniques employed has some degree of success (not 100%) and attempts to reduce pain signals generated by the trigeminal nerve, which transmits painful sensation from the face (hence the term trigeminal neuralgia). First, there is a procedure called glycerol rhizotomy, whereby the surgeon injects glycerol directly into the nerve under x-ray guidance. A second procedure, called balloon compression, is another option whereby a deflated balloon is passed to the nerve base and (again under x-ray guidance) inflated to effectively compress the targeted portion of the nerve. A third option, called radiofrequency ablation also exists, whereby a small focal lesion is created in a portion of the nerve. If facial pain persists after one of these treatments, many surgeons may offer one of the above additional surgical treatments.

A very small proportion of patients with TN will have a vascular-related cause. There may variations, or extra loops, present in small blood vessels supplying a portion of brain called the brainstem. One of these abnormal loops may compress the trigeminal nerve as it exits the brainstem. There are several tests which may  be used to identify this "microvascular" etiology- one widely used test is called an MR angiogram (MRA). If you are found to have a vascular cause of TN, you may be a candidate for a procedure called microvascular decompression (MVD). The MVD procedure is also performed by a neurosurgeon, and it involves the placment of a small telfa pad between the offending vessel loop and the nerve root itself.

The above discussion is meant to serve as a general overview of TN treatment options. For specific management and/or further diagnoistic testing related to TN, I would recommend close follow up with a neurologist who specializes in headache and facial pain.

Thank you,
JKL,MD

[csfleaker]

I suffered from TN.... the best medication if you can tolorate it in my opinion is tegretol.  Unfortunately I am not able to take those meds... so I went for the most severe operation a MVD.  It has helped a ton with the TN facial pain (which is the worst).. but has left me with a csf leak that can only be "blocked" so it still leaks from time to time depending on how active I am (4 corrective surgeries later).  Thank goodness the csf leak responds well to laying down, caffiene and pain pills but I am still unable to work or function as a family member.  With me shocks of pain it was more painful to deal with but I was still able bodied enough to keep a job and a family.  Think long and hard before taking the steepest measure and remember that 5-10% is a not a risk I would take again.In new pain,csf leaker

[tomsch]

I wont be very technical, hopefully you'll understand: My wife has a history of face pain, mostly in the cheek and upper gum area on the left side of her face. it was diagnosed as atypical trigeminal neurelga. She tried many different medications. Wind and cold were the worst and stimulating the pain. We opted for surgery after medications didn't help. She had a rizodomy of that nerve, and in fact   she is no longer experiencing symptoms in that area of her face; instead, she now has continous pain from her jaw to her ear. The surgeon went in a second time to work on that area with the same type of procedure, it did not help. this situation has gone from bad to worse and we do not know what to do next. We meet with the surgeaon again this week, but we have lost faith in him. We don't know what happened in the first surgery to have made this so much worse.

[mysterypatient]

have you tried to get nerve blocks? I get the pain right in my temples..it goes along my eyebrows..I was not diagnosed with TN but I go to a Pain Management Doctor for headaches and he gives me a shot right in the temples...it works great...it doesn't always last long..but they day I get a shot..my temples and eyebrows feel numb..it feels soooo good for that day...it takes awhile for the steroid part to kick in..by it definately helped. GOOD LUCK

[bampa]

sorry to hear about your TN.  I have suffered from it since shortly after being dx with Multiple Sclerosis 9 yrs ago.  I have had 6 procedures on my Trigeminal nerve. 5 where Trigeminal gycerol rhizotomy - 1 worked for about 18 months to stop the pain the other 4 didn't and I have had gamma knife which was horrendous and did nothing.