A new Mayo Clinic study found that posterior fossa exploration surgery provided significantly better pain relief than stereotactic radiosurgery for patients with trigeminal neuralgia. This study was presented at the American Association of Neurological Surgeons Annual Meeting in San Diego on May 5, 2009.
Trigeminal neuralgia is characterized by episodes of intense, stabbing, electric-shocklike pain in areas of the face which have branches of the trigeminal nerve (lips, eyes, nose, scalp, forehead, upper jaw and lower jaw). The trigeminal nerve carries sensation from the face to the brain. In trigeminal neuralgia, the nerve function is disrupted. Approximately 15,000 patients are diagnosed with trigeminal neuralgia each year in the U.S.
“Medical therapy eliminates or significantly reduces the pain for 75 percent of patients with trigeminal neuralgia, but the effectiveness generally decreases over time and surgery becomes necessary for patients to maintain their quality of life,” says Bruce Pollock, M.D., a neurosurgeon at Mayo Clinic and the lead author of this study. “In posterior fossa exploration surgery, the hope is to find a blood vessel pushing onto the trigeminal nerve that can be moved or displaced. We consider this to be the gold standard of trigeminal neuralgia surgeries. Stereotactic radiosurgery, on the other hand, directs radiation onto the nerve with the hope of creating a mild degree of damage to relieve patients of facial pain.”
Dr. Pollock and his team reviewed the records of 149 patients who had posterior fossa exploration surgery or stereotactic radiosurgery for trigeminal neuralgia between June 2001 and September 2007. Prior to surgery, patients were informed that posterior fossa exploration surgery was most likely to relieve facial pain without causing numbness. Sixty-one percent of patients chose to undergo posterior fossa exploration, while 39 percent opted for stereotactic radiosurgery.
The researchers found that patients who had posterior fossa exploration were more than two times more likely to achieve and maintain pain relief without the need for medications. Additionally, posterior fossa exploration surgery was found to be safe, and the incidence of facial numbness was much lower after posterior fossa exploration surgery than after stereotactic radiosurgery.
Below is a link to an edited youtube video with Dr. Pollock .
I’m a 51 year old woman and have been suffering miserably with the intolerable pain symptoms of Trigeminal Neuralgia in my lower right jaw. I also have a Perotid mass growing in front of my right ear. After having root canals in nearly all of my teeth, a molar extraction, a bite plate made for the potential of TMJ – none of which provided any relief, my dentist finally recommended I see an Endodontist… who referred me to an ENT and/or Neurologist. I just saw an ENT who ordered a CT Scan, is the one who identified the very obvious Parotid tumor and told me it must be removed. He claims he has performed more than 400 of this type of surgery … But my concern is that he did NOT acknowledge the association with my Trigeminal Neurology symptoms nor whether the removal of the tumor would relieve my pain. Is it that he wouldn’t know until he sees the results of the CT scan or actually got inside and was able to identify if the tumor was the cause, OR should I be concerned that he isn’t the right kind of doctor for my particular case?? I’ve lost a lot of weight (which I can’t afford to lose – I’m 5’4″ and down to 105 lbs) because I’m terrified of the pain when I eat, I can barely get through brushing my teeth or washing my face, and sometimes am unable to finish a sentence without having an “attack.” BUT, here’s a strange twist that I’ve never heard of with either of these two “conditions”: Sometimes certain foods will trigger an attack “on contact” in my mouth BEFORE I even chew. Could this be a saliva gland reaction/trigger since they all somehow seem to be related? This is the one symptom that appears to be unique to my situation. It’s difficult to find reliable facts from cases I’ve read about on the Internet, so I’m frustrated, scared, angry, depressed and to make matters worse or shall I say seemingly hopeless, I do not have health or dental insurance. Where does one turn under these circumstances and hope to get the best care necessary?
Thank you for your comment. It has been forwarded to the doctor’s attention.
My symptoms are very similar. However, I already underwent microvascular decompression twice and my pain is still unbearable. I recently stopped all of the heavy opiates and narcotics because of the significant symptoms and depression and of course my pain is “out of control”. Without pain medications I am in so much pain, with them I have a very difficult time concentrating! This situation is very difficult, I too have lost a lot of weight I cannot afford to lose and continue to ride the roller coaster with no end in sight. I have been to Mayo in Rochester and had follow-up to no avail. The diagnosis of TN was agreed, however, treatment is always in question. The pain and depression are so significant I am questioning my future. What is the latest treatment post MVD X2 with severe pain and depression?
Thank you for your comment. While we cannot provide medical advice online, I reviewed your comment with Dr. Pollock and he said that if there is ongoing pain, several surgical options may be available. You should contact your physician to discuss the best way to proceed.
I was diagnosed with TN 3 1/2 years ago. For me, all three branches are affected. An MRI showed nothing; no tumors, etc. They saw nothing that could pinpoint a cause. Neurontin and nightly amitriptyline make things tolerable, though there is rarely a day without pain. About eight months ago I noticed something new: When the upper branch is involved and hurting, I can feel what seems to be a periodic bulge of blood surging through the blood vessel that runs up along my temple beside my eye. It does not occur on my right side, just the left. When I rest my fingers along the vessel, it feels like something is holding it back, and then suddenly releases, and a ball of blood surges through. Have you ever heard of this? I am a bit concerned about a stroke. My physician said he didn’t think there was cause for concern, but then again, I am the first patient he has ever had that suffers with TN. Any thoughts?
I would like to add to my original post: Since posting I have reserached for hours (and hours and hours and…) and found information about a study conducted at University of Maryland School of Medicine in 2006 which linked neuralgia with a 75% greater chance of suffering a stroke in their lifetime. The study indicated that this could be due to the neuralgia affecting the veins surrounding the brain by pincing off circulation or weakening the walls of the veins. Can this “balloon bulge” of blood that I feel be causing the weakening of my temporal vein(I really have no idea what to call it)? It seems to me that a vein is not supposed to have big bulges running through it – how long until the frequent bulging will weaken the walls? I seem to be rather uninsurable, so I know that treatment other than medication is not likely to happen. I just would like to have a better idea what I am facing. Thanks for any info you can provide.
Thanks for your comment. As I’ve noted previously, we cannot provide medical advice online. You should contact your physician to discuss your concerns, or you can call one of these numbers to request an appointment at Mayo Clinic:
Arizona: 480-422-1646
Florida: 904-494-6487
Minnesota: 888-509-8773
I wasn’t asking for medical advice. If you read what I wrote you would see that I was asking what you might or might not know about surging blood vessels and/or stroke connection to TN. I did not ask for advice. Generic information about weakening of walls would have been helpful. Clearly you did not understand what I was asking. DID NOT WANT MEDICAL ADVICE. I asked about any thoughts you might have about the subject matter, not ME. Websites that deal with the subject matter of strokes in relation to TN, or weakening of walls. Or maybe contact info to obtain the Maryland study. I thought the Mayo Clinic would actually have information that was helpful. My mistake. If not to suggest further reading or websites, or what have you, exactly what are you here for???
What is involved with posterior fossa exploratory surgery. That is, how does it compare, for example, to what a patient undergoes with microvascular nerve decoompression surgery?
I should have explained that I have already undergone in glycerol injection treatment for trigeminal neuralgia.
Hi Gloria,
Microvascular decompression is a type of posterior fossa exploration surgery. More information about treatments for Trigeminal Neuralgia can be found on the Mayo Clinic web site at: http://www.mayoclinic.org/trigeminal-neuralgia/treatment.html.
I have had TN many years. Lucky, family Dr. and dentist diagnosed right away. Take moderate to large doses of tegretol to control pain. Have had gamma knife twice, fair amount of nerve damage to left side of face. When it flares up badly (never completely goes away) it is like lightning strikes. I have pain from scalp and straight across from ear pain,across top of mouth, no lower pain. It is amping up again. Is a person who previously had gamma knife a candidate for surgery?
Susan,
According to Dr. Pollock, the general answer is that yes, a patient who previously had Gamma Knife may still be a surgical candidate. However, an evaluation to determine the patients’ overall health and amount of nerve damage from prior surgeries would be necessary. If you’d like to request an appointment at Mayo Clinic, you can call one of these numbers:
Arizona: 480-422-1646
Florida: 904-494-6487
Minnesota: 888-509-8773
My mother has had undiagnosed TN for 15 years until this last year. Been to over 40 different dentists/ents/neurologists/tmj specialists/oral surgeons/chiropractors and $60,000 later still suffers in pain…NOT one doctor has ever mentioned surgery to her and it took her being in so much pain she was halucinating before they would get her pain under control and admit her. My mom has been living a life of hell not knowing one day to the next how she will feel and thank God my dad makes enough money to have her able to stay home as she can not work with this condition. Recently her neurologist refered her to Mayo and they denied her stating they don’t know what other tests they could perform on her. What does it take for someone to take on a difficult case and not just pass you on to someone else to deal with? Why can’t they look at her case and talk about surgery? What sort of criteria do you have to meet in order to be considered for this exploratory surgery?!!
Hi Amanda – Thank you for your comment and questions. You will be receiving an e-mail from me shortly, and we’ll see if we can figure out whether our Mayo Clinic trigeminal neuralgia experts can help your mother.
Thanks,
Elizabeth
Just wanting to check that you did receive my return email…have been waiting patiently for a return call from you.
Thank you.
Amanda Jensen
At last! Someone who unetdrsands! Thanks for posting!
You TNA patients out there had better come to the realization that medical science does NOT KNOW what causes this pain. I have had TN for more than half my life and have had some of the less involved surgeries to no avail. If the present surgeries for TNA were pharmaceuticals instead and had to through double blind clinical studies, the FDA would NOT approve them. It’s time to stop feeding the surgical medical mill until there is an actual breakthrough in the treatment of this condition. Until then, learn to get along with the anti-convulsants and pain medications. Find a physician who will help you learn to function with the minimum dosage of medications and make sure to get adequate sleep. That’s how I’ve survived these 38 years with TNA. Stay away from these surgeries. I suspect that the reported successes are either the “placebo” effect or the patient telling the surgeon what he wants to hear just to get away from him. Am I right? Good luck to us all and Godspeed to the discovery of the real treatment.
I don’t understand why nobody is familiar with Barrows Neurological
Institute in Phoenix Arizona. After being given the runaraound by
urgent care 2 dentists, and a neurologist, I learned of Barrows Institute. I had endoscopic microvascular decompression surgery a year
ago and today I am pain free. I hope this information can help.
Barrows phone number is: 602-406-3181
The neurosurgeons name is:Dr. Peter Nakaji
which I highly recommend