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Trigeminal neuralgia surgery gives patients their lives back

Try to imagine a pain so excruciating that some patients have even told physicians they’d contemplated ending their life to alleviate the suffering. Sadly, this is the type of pain characteristic of trigeminal neuralgia (TN).

Known as the suicide disease, TN is a painful disorder that affects the trigeminal nerve, the nerve primarily responsible for sensations felt in the face.

Patients battling TN experience occasional, sporadic or constant pain in the face that makes everyday tasks like talking, smiling, shaving, eating, and brushing your teeth unbearable. In some cases, even a light breeze against the face can result in terrible pain.

In many cases, patients will completely avoid these triggers, which can result in poor hygiene, weight loss and tooth loss, among other effects. In extreme cases, some patients will take their own lives.

Unfortunately, getting an accurate diagnosis of TN is often the root of the problem. Due to the trigeminal nerve’s location, many patients and their doctors or dentists believe they have some sort of dental issue and teeth are often removed.

Mary Lou Peterson suffered from TN for several years. She too, was close to taking her own life if it had not have been for a TN hotline. Thankfully for Peterson, she was talked out of committing suicide and is now the support group leader of the Trigeminal Neuralgia Association – Twin Cities.

So what does having TN feel like?

“It’s like one hundred knives stabbing you repeatedly in the temporal area,” said Peterson.

Once TN is properly diagnosed, but the pain persists and medications no longer help, surgery to sever connections of the trigeminal nerve is a viable option. In many cases, it can alleviate the issue for good.

Andrew Grande, M.D., is an assistant professor and neurosurgeon in the Department of Neurosurgery and performs TN surgeries at the University of Minnesota Medical Center. Grande has seen the impact TN can have on a patient’s quality of life and therefore better understanding TN is a major priority for Grande and his colleagues.

“The reality is that we still don’t know what causes trigeminal neuralgia,” said Grande. “Ultimately I think it’s important to get to the bottom of why people get trigeminal neuralgia. Then we can begin to develop better treatments designed to get at the root cause of trigeminal neuralgia.”

In order for Grande to make an accurate diagnosis of TN, he collaborates with the Center for Magnetic Resonance Research (CMRR) to obtain the highest quality images using high-powered magnetic resonance imaging (MRI).

Pierre-Francois Van de Moortele, Ph.D., assistant professor of radiology and Christophe Lenglet, Ph.D., assistant professor of radiology and Institute for Translational Neuroscience (ITN) Scholar, are now a part of a newly developed facial pain center that is dedicated to the care of patients with facial pain.

When asked what the surgery has meant to her, Peterson simply stated, “It gave me my life back.”

This treatment is also very rewarding for the doctors who perform the TN surgery.

“This is why we do things. If you can take someone who has disabling pain and return them to a normal life, that’s the reward,” said Stephen Haines, M.D., Head of the Department of Neurosurgery.

Comments
  1. June 4, 2013 7:55 pm | Linda E. Kornegay Says:

    I have had TMJ for four years have had unsuccessful surgery and am now in more pain than ever and am taking pain pills and wearing pain patches (all unsuccessful) my life revolves around my pills and resting in bed…..I am desperate for help. I had my surgery at Duke Hospital in Durham, and the surgeon was Dr John Sampson. Any help will be such a blessing. Just having someone to talk with that understands the pain and having to stay home to avoid not being able to get to your pills, heating pad and your bed! I have almost given up any relief or cure but reading about your physicians and hospital has given me hope for my life. Best regards and hope to travel to your facility…..Linda E. Kornegay. 354 Friendly Drive—Goldsboro, NC 27530 (919) 735-6175. Fax. Lindaleek@nc.rr.com

  2. June 5, 2013 9:13 am | Matt DePoint Says:

    Hi Linda – Thank you for reaching out to us. We have notified Dr. Grande and he will be contacting you soon. Take care.

  3. July 2, 2013 4:04 pm | Keasi Tafea Says:

    I have been in pain for 4 years and waiting for an operation but am too scared.But reading all your comments is so helpful.I still come too work but I dont have the happiness I use to have before.I could not wash my face,brush my teeth.eat and drinks when am in pain.Sometimes I just force myself to eat and drinks.Please help me.

    • July 2, 2013 4:10 pm | Matt DePoint Says:

      Hi Keasi – Thank you for reaching out to us. I’m sorry to hear about your struggles with TN. Can you please send me your contact info and I will have someone from Dr. Grande’s office contact you?

  4. July 18, 2013 6:27 pm | Keith Moses Says:

    My dad suffers from TN. He has had gamma knife with no success. Nothing helps the pain. Please contact if you could possibly help.

    • July 19, 2013 1:19 pm | Matt DePoint Says:

      Hi Keith – I’d be happy to pass your information along to Dr. Grande. Can you please provide me with your contact information? Thanks.

  5. August 26, 2013 10:04 pm | Michelle B Says:

    My father as well has tn. A prescription used to work but no longer does. What is he surgery that Grande performs. I would really appreciate more information.

    • August 27, 2013 8:27 am | Matt DePoint Says:

      Hi Michelle – Please contact the Department of Neurosurgery at the U of M for more information regarding the TN surgery. The number to call is 612-624-6666.

  6. September 20, 2013 8:57 pm | Steve Diffenderfer Says:

    I was diagnosed with Occipital Neuralgia in March and as of late, I have been experiencing some facial pain as well.

    I know I’m not at the point where “it has taken over my life” but I’m hoping to prevent it from getting there.

    Is there any info that you can provide? Actions to take? Meds to try?

  7. September 23, 2013 11:45 am | Justin Paquette Says:

    Steve, our physicians can’t provide direct medical advice to patients without seeing them in the clinical and knowing more about their medical history, symptoms, etc. What we can share here is limited to general information to help set patients down a path to a constructive conversation with their doctor.

    You’re doing the right thing by staying ahead of your condition. If you’d like more information directly from our facial pain specialists and the multidisciplinary team here at the U of M, feel free to contact the Neurosurgery clinic at 612.624.6666. Or, I can pass your contact information along to our doctors – feel free to email me your contact info at jpaquett@umn.edu. I’m happy to have one of our specialists reach out to you.

    -Justin

  8. September 25, 2013 10:04 pm | John Says:

    I had this issue and my doctor gave me IVIg since then I have been doing well. i asked for the treatment after reading on cidpusa.

  9. January 2, 2014 10:51 am | Leslie Killebrew Says:

    I am writing for my husband. He had heart attacks in 2008 and then started having headaches. He has had prostate cancer in 2012 and then in 2013 had squamous cell carcinoma in his head and had Mohs surgery and then plastic surgery before they got it all and then had 33 treatments of radiation. He was scheduled to have gamma knife trigeminal neuralgia surgery before the cancer but decided to take care of cancer first. He has had gamma knife and his neurologist said he did not have trigeminal neuralgia but when he had the gamma knife it made him have it. Nothing has helped. Been on all kinds of medicine for years. They are now giving him tagrotal but still is not helping. Please let me know what you think and I would be glad to talk to you. My phone number is 601-955-1865. Thanks for your help!!! Betty Killebrew

    • January 3, 2014 8:41 am | Justin Paquette Says:

      Betty, I will pass along your name and contact information to Dr. Grande’s office so someone from our clinic can reach out to you. Thanks for reading and all the best to you and your husband.

  10. January 6, 2014 9:43 am | JEFF Says:

    I have had TN pain for the last 3yrs…..though my condition is swelling on meckels cave which according to my neurologist through radiologist are saying my TN is damaged…..though am under steroids(predinisone)…..for atleast 2 months…..i tried tegritol for pain but never work…..my doctor performed trigeminal ganglion block which also i dont see it working…..i would like to know the best procedure to end this plus i would like to know where is your hospital located……

  11. January 23, 2014 10:20 pm | Danielle Says:

    I suffered from TN pain for 6 years. I couldn’t get help until October of 2013. I had to drive 10 Hours for help. I was given all the information about the decompression surgery, but not what the recovery would be like. I would like more information about recovery from surgery. Please email me . TN has taken over my whole life. I would like no love to have my life back.

  12. January 25, 2014 5:16 pm | Thanh Truong Says:

    My wife had TN since 2008 and treated by Oxcarbazepine 150,two pills a day>She took this medicine in 3 years and she felt pretty good and she stops taking medicine,but whenever she feel seizure and pain come back,she takes again Oxcarbazepine 150 as before,but presently her pain persist as Oxcarbazepine 150 does not work any more(more seizure and intense facial pain)
    I think she would need a surgery once for all to cure her TN.
    What is your recommendation and your treatment for her TN.
    Thank you very much for your assistance.

  13. May 15, 2014 9:02 am | Ross Says:

    Hello,i am writing this in hope i can finally get some help for my wife. She has had trigeminal neuralgia since 2012 when a dental surgeon removed part of her lower jaw to pull out her molar. Since then it has become increasingly debilitating for her to chew talk, sleep or take care of any of our 5 beautifull children. As of this moment she has gone three days without being able to do any of the aforementioned daily tasks, and it is crippling her completely with no trigger points and no medication she is losing hope to the extreme.
    Please can you help her rid herself of this debilitating affliction.
    our number is 804-210-1242

  14. May 20, 2014 1:18 am | Lydia Solis Says:

    I’ve been suffering from TN for about two years, after trying different medications, I tried acupuncture and it seemed to help for about a year, but now the pain is back and constant. I’m having problems talking, chewing, sleeping etc. I’m a veteran, 63 years old and VA just called me about getting surgery at the VA medical center in Syracuse, NY. Can anyone tell me how long is this surgery.

  15. May 29, 2014 12:05 am | Debbie Says:

    My husband had a tooth extracted 2 years ago. He got a bad infection and nerve damage from this. He was on a pick line for 6 weeks, has taken several things but nothing helps. The pain is horrible. I wondered if a nerve block could help. I am not sure he can take it any longer. we live in St. Joseph, Mo. We need to find a Dr. maybe in Kansas City that can help him. It is unbelievable that all the different places we have been no one can figure out what to do. I just need your help soon. thanks

  16. June 9, 2014 10:15 am | Betty Says:

    Hello, I have been having pain above my left eye when I cough, bend over, sneeze, or any kind of straining. I have had MRI, MRA, CT Scan, Spinal tab, and they have found nothing, could this be Trigeminal Neuralgia? I have had this since Oct, 2013.

  17. June 16, 2014 10:03 am | Sundeep Singh Says:

    Hello Every one, My Mother Aged about 48 is suffering from TN Since 4 years, She had MRI and doctors suggested TEGRITOL CR 400, and GUDRIL if the Pain in at high level, still she gets shocks of TN and it is not permanently cured, we had contacted higher doctors also, they had changed the tablets but with same Formula, Iam totally confused, may be it is because i had searched alot about TN on internet, It is horrible we cant expect the pain when it comes,It is my Humble request for all to suggest the good Medication, which is safe and effective, I Love My Mother alot, i can’t held her like this, Please sugges…………

  18. June 17, 2014 4:01 am | Angela Says:

    Hello, I would like to ask for your assistance in our case. My father has Trigeminal Neuralgia and I can’t contain the pain that he is experiencing whenever it triggers. These past few months he experiences it frequently and his only rest is sleep. He tried a lot of medicines but it cannot take away the pain. Please do provide me sufficient information on this case. Thank you.

  19. June 24, 2014 1:09 pm | Megan Rodriguez Says:

    I have had TN for 3 yrs went into remission and then two bad wisdom teeth flared it up again and I have been on tregtrol for 7 months now with semi pain free days. It also effects my ears makes them have a burning sensation around the outside of them. I would like some more information regarding your treatment. Where do I send my contact information.

    Thank you

  20. August 6, 2014 1:44 pm | Sheryl Carns Says:

    My mom was recently diagnoised with TN. Does anyone else have hearing or short term memory loss? She did not seem to have this issue untill her recent bout of TN.
    Also…can someone reccomend a good physican that specialized in TN in NC????
    Thank you!!!

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