I personally suffered for 9 months with tn undiagnosed. I thought and attempted suicide multiple times. After being diagnosed. I broke down. Knowing what ive read about it. When youre in that much pain you end up doing days of research TN was the last thing i was wanting to hear. Im 29. Pulled 5 teeth in the 9 months i was undiagnosed. My mouth is in constant pain. I was pulling bone spurs from my mouth everyday. Life became a hell of sorts. Not able to go out on days its windy and im having what i call an "attack" but in reality its the medication failing. I have good and bad days now. Which is better than 24/7 hell. I always described my pain as being a shotgun victim. Felt like my face was shot with birdshot. Just felt like my face was hit with a claymore and yet i looked fine on the outside. Life is just crazy and things like these continues to baffle me. I respect everyone that goes through this. Youre literally fighting death because death to some of us is relief. So we fight to suffer another day and mostly its for the people we love.
@avfan9672 жыл бұрын
This was phenomenally informative. Impressive
@lindahammond77592 жыл бұрын
I had a MVD in February 2021. I woke up in ICU without pain. I had episodes of 5 to 7 days of burning and severe pain every 2 to 3 months. As time went on for a year it got more often and more severe. I could not to eat or talk without severe jabs. I lost 10 lbs every time this happen. The most important thing in your decision is which surgeon you choose. This is a rare surgery and a rare disease. I cho
@TamNguyen-qo5sb2 жыл бұрын
My mom is suffering TN. Can you please tell me which hospital and which surgeon who did your surgery ?
@lindahammond77592 жыл бұрын
Dr Fukushima, Japanese neurosurgeon in Raleigh NC USA. Raleigh Neurosurgeon group. He operates in US about 3 to 6 months a year. He has done over 2,800 MVD. Excellent neurosurgeon. Wake Med Hospital In Raleigh North Carolina USA.
@lindahammond77592 жыл бұрын
Dr Fukushima in Raleigh NC. My surgery was 2/19/2021. Going back to him this year for the other side. Hospital was Med Wake in Raleigh which has a hotel inside for your family. They only allow one person because of covid in 2021. He sometimes uses Duke University Hospital but I was very pleased with the care at Wake Med.
@lindahammond77592 жыл бұрын
His full name is Dr Takanori Fukushima. He operates mostly in Japan.
@markklonis51752 жыл бұрын
@@lindahammond7759 . Hi Linda. I have lived a horrific nightmare for the last 6 years. Too much to go into here in this message. Diagnosed with Trigiminal neuralgia. Over 25 injections and nerve blocks and botox. Nothing has helped. Trying to get to someone who can help. Been to Duke also. Terrible burning pain in my face. Will you be ok with talking to me about your experiance. I can give you my Facebook page info or email address to be able to talk.
@hq3120 Жыл бұрын
Also to mention that those of you with bilateral TN, also know it’s not just MS that it’s associated with. About 40 percent of the ppl I’ve met with TN have it bilaterally. Some have compressions on each side, some have MS, a few don’t have any known underlying issues, and some of us also have Lupus & Sjogren’s, which contribute to it.
@trigeminalwillpower6 ай бұрын
i am suffering from this last from 5 years nobody help us out from those attacks
@JDMc2.0 Жыл бұрын
Doctor I have a question for you, Are you going to answer any of your followers questions?
@WeillCornellNeurosurgery Жыл бұрын
Dr Stieg answers as many questions as he can during the live webinars - sign up to attend here: bit.ly/34tin9j
@maryt9909 Жыл бұрын
I was diagnosed in June 2022. I'm taking 600 mg of gabapentin. The worst pain I have is in my sinuses when I cough or sneeze. I haven't heard that pain in any of the video or articles I've read. Has anyone else heard of that pain during coughing or sneezing?
@maryt9909 Жыл бұрын
@P RoWa I had a CT scan of my sinuses and they don't show any infection, my ENT referred me to the neurologist who diagnosed me with the TN.
@harryd5650 Жыл бұрын
A cough or sneeze could set off an attack in the usual V 2&3 areas like other triggers like talking loudly, eating, pursing my lips, trying to brush teeth and there are others. (I couldn't brush on the right side for months).
@harryd5650 Жыл бұрын
My first attack was May 28 2017. I had gamma knife in Oct 2019. It helped for about 5 months. Had my first balloon rhizotomy Oct 2020. It started to wear off in less than a year. I ate a lot of carbamezepine. Balloon rhizotomy repeated June 2022 and complete resolution of attacks but more after effects this time. Still take some carbamezepine as recommended by the neurologist.
@plt1969 Жыл бұрын
Yes my sinuses are severely effected, I get plugged up with severe pressure and pain, I sneeze 20-30 times my sinuses pour clear fluid and my eye tears uncontrollably and it swells up. The pain is excruciating, seeing doctor this week. I was poisoned with carbon monoxide for a year from leaky gas fireplace and that's how this all started. Fingers crossed my doctor will now understand this is not allergies or chemical sensitivity.
@maryt9909 Жыл бұрын
@@plt1969 I wish you good luck. I hope they give you results so you can get some relief from the pain.
@Flashback5022 жыл бұрын
Hello have had tinnitus for a year then developed TN on V2. On same side as tinnitus ( right side) 6months later what's the chance of the 2 being related I am 46 with no other health issues.
@loripatterson57536 ай бұрын
I have trigeminal neuralgia now and I am dying!
@michillekrantz51546 ай бұрын
Me too,,,life has come to a standstill
@SuntoSet774 ай бұрын
I sympathize with you both. Suffering after cancer surgery in my Hard Palate and my right maxilla was removed due to bone marrow cancer. They obliterated my nerves. It has been hell..I have a Neurologist. I got botox for migraines and it all went bad. My migraines got worse. My uveitis from psoriatic Arthritis enflamed. I'm below 100# n 63yrs old. I'm prepping for the day I go to another state that allows death with dignity. I was in bed for 3 months with migraines and I prayed God would end my Suffering. I'm having a few hours of better days right now. I am discouraged and I don't trust medicine or surgeries right now. I'm just stuck like everyone here in a sort of torture chamber that goes round n round .. how do we escape ?
@aslamkabirasif49692 жыл бұрын
Thank you 🖤
@geofschwer16253 ай бұрын
Dr. Stieg, I have had what I would call Type 2 TN on v.2 and v.3, but no MRI or MRA scan find a problem. However, the pain is pretty darned obvious to me! Now, we toss in one more factor that may be a contributing cause. Just last week I had an angiogram and it did show something quite condemning to me--an 80% blocked artery. FYI, I'm 83 and swim regularly, play the tenor sax and restore old cars, so I'm not exactly dottering old man with one foot in the grave. My doctors are now saying rest, don't bend over, and resist your normal level of activity. I am not very happy about all of this. Could my TN-pain like systems be due to a blockage in my brain?
@yaraviera4444 Жыл бұрын
Can you explain about occipital neuralgia??
@Fed-up_Christian-Liberal Жыл бұрын
HELLO DR. STIEG! I wish I'd seen this before now. I've been aware of you and your reputation for several years. I am very much looking for an effective treatment for my very unique situation. Most pertinent Hx: MS, Typical and Atypical TN, both are bilateral, 6 years now. All medical management has been tried and mostly ineffective. No vascular component, but the MRA did find a brain aneurysm, which has been dealt with. I was deemed to be ineligible for invasive treatment due to the MS. Many more summary details available if we can connect privately. The last question asked in your Q&A was one I was very interested in hearing the answer to. It had two possible interpretations, and I had hoped you would answer both to be sure. You chose to answer only one, which was V1 and V2. I believe the question was actually referring to Typical and Atypical TN. IF I were one who is eligible for surgical consideration, THAT is the question that matters! The video gave me information I didn't know about the relationship between MS and TN, specifically the propensity for bilateral presentation. I have only a single microlesion in the area of CN5 origin in the medulla, so my Neurologist has hesitated to say the MS brought me the TN booby prize. I say if it quacks like a duck... I did consult with the radiotactic neurosurgeon, and he was the one to say no to ANY level of invasive intervention. I was hopeful that you would specifically address tx in the MS population once you addressed the association with the Dx. That would be a discussion with a lot of if/then, and only serve to confuse people who are free of MS, so I understand why you did not. I would be thrilled to even have a single email exchange with your team about the specifics and possible interventions. I'm happy to travel to you only IF there is a reasonable possibility based on my history. This has kept me on disability, away from my RN career, more so than any of my many issues. Worse, it truly affects me all day, every single day. Thank you for your work in this area. We need you and those that will follow!
@WeillCornellNeurosurgery Жыл бұрын
Dr Stieg can't reply to questions left here - please visit us online and contact his office if you'd like to make an appointment: weillcornellbrainandspine.org/condition/trigeminal-neuralgia
@michaelpondo-nv9yy Жыл бұрын
A great procedure fir trigeminal neuralgis.
@lindahammond77592 жыл бұрын
I had MVD and it was the best decision. Very important that you use a neurosurgeon who has done this surgery many time. You might have to travel to get the best. But it is worth trip.
@TamNguyen-qo5sb2 жыл бұрын
My mom is suffering TN. Can you please tell me which hospital and which surgeon who did your surgery?
@lindahammond77592 жыл бұрын
@@TamNguyen-qo5sb Dr Takanori Fukushima in Raleigh NC surgery was 2/19/2021. Going back to him later this year when he back in US to do the other side. He operates in Japan most of the time.
@AJTarnas6 ай бұрын
what sort of side effects can be expected from the medicines that treat this problem?
@brainmachine235 Жыл бұрын
My family doctor in Israel accused me of making up this “fictional” illness, stating that “There’s no such thing.” What has made it easier to live with is a tight ski hat worn every moment I’m at home, year round. It feels like it’s holding in and pressing on my brain. I am too embarrassed to wear it outside other than in winter. No complaints: I’m lucky in that there’s no more ice pick in the brain pain.
@tamarawilson5997 Жыл бұрын
Oh God! The ice pick jabs. 😭
@dianeharrelle66752 жыл бұрын
I have had LEFT SIDE TN for 36 years. Very debilitating. I'm 64 now and comorbidities on board. No hope here.
@patriciaarmfadelicatelife2 жыл бұрын
I'm so sorry. I'll be praying for you. I'm 37yo and I have it on my left side (v1, v2 and v3) for 21 years and on my right side (v2) for two years now. I'm not so hopeful either.
@JDMc2.0 Жыл бұрын
@@patriciaarmfadelicatelife praying for both of you 🙏 I'm a 59 yr old with TN since 2007 Left side all 3 branches. I'm lucky if it goes into remission for a few weeks. Maybe once or twice a year. You are awesome fighters, TN Warriors
@loisadams8376 ай бұрын
I’ve been recommended for MVD surgery. We believe cold weather sets off a triggering episode. I live in Chicago. Question: if I have this surgery can I still live in Chicago without an episode or would I still need to move to a warm weather area? Thank you.
@loripalmer47705 ай бұрын
I have MS and my last MRI (Dec 23), showed an acoustic neroma. Beginning of Feb, the pain in my jaw was unbearable. Could the neuroma be connected to the possible TN?
@lauriekline178 Жыл бұрын
I have this. I don’t have a blood vessel touching the nerve. I have mast cell activation disease. This is nothing more than good ole fashioned anaphylaxis of the CNS. I’m almost in remission. Got my my mast cell count down. I’m taking Zyrtec, Lyrica, montelukast and metformin. This is an allergic/inflammatory disorder. Nope. Not spending a red cent on surgery. Do your homework. These doctors need to READ medical literature.
@canoegirl63353 ай бұрын
Are you okay now?
@gachajanna68182 жыл бұрын
Hello Dr. I have TN for almost 20 yrs and i have pain on both left and right side of my face. I'm 61 and i ise tegretol whc sometimes effective sometimes does not. What is the side effect of tegretol. Thank you
@Freebird-uo4jb Жыл бұрын
This is my personal opinion of Tegretol. Tegretol is horrible for your body and your mind! It put me in a Zombie-like state and made me sleep for four days straight! I only woke up to use the bathroom and to have a drink!! In my opinion, Tegretol effects your ability to speak, write, and, form cohesive sentences (on paper and orally). It causes a very flat emotional affect; a very hum-drum sort of lazy response to serious issues or incidents. I was totally uncoordinated while I was prescribed Tegretol. I couldn’t walk a straight line and I kept dropping things in the kitchen. It was so bad that my neighbor actually called the police on me, while I was outside with my Children. She said that I was, “under the influence of drugs or alcohol,” and the Police filed an investigative report with my local Child welfare office. This caused me and my family significant emotional anxiety and it ultimately lead to a 9 month investigation into my, “physical ability to properly care for myself and my children.” At the time, I was also prescribed psychiatric drugs to control my TN pain. This finding by the child welfare office only further fueled the fire throughout my, “investigation,” as it brought into question my emotional fitness as-well-as physical fitness. This office refused to accept that psychiatric drugs could be used off label to manage TN pain. Thankfully I was able to bring in the ADA and I built up a case against this DCF/child welfare office with the help of the DOJ. Sadly, not many parents are capable of knowing their rights and defending themselves. Steer clear of Tegretol (In my opinion). For a neutral perspective on the side effects of this medicine, and any medicine, please do your research online.
@samanthawinkelman80446 ай бұрын
Please can you help me recently my husband had a sinus operation endoscopic sinus, bearing in mind he has Trigeminal neurology, I've got scans of before and after, we need too know if the after scan picks up something Please help
@stj971 Жыл бұрын
SINCE YOURE A SURGEON I WOULD IMAGINE THATS YOUR ONLY TREATMENT. DO YOUR PATIENTS A FAVOR WHO HAVE SILVER FILLINGS, HAVE THEM CHECKED FOR HEAVY METALS. ALSO CHECK FOR POSSIBILITY OF HERPETIC LESIONS ON GANGLION. AND PLEASE STOP TELLING PATIENTS THIS IS RARE, IT IS NOT
@diptijagdev48132 жыл бұрын
How do we know its TMD or TN
@Freebird-uo4jb Жыл бұрын
Get your Doctor to send you in for a Brain MRI with contrast to see if they can find a physical reason for your pain. Trigeminal Neuralgia IS a CRITICAL disease and should not be disregarded as just a regular old ailment. They didn’t nickname it the suicide disease for nothing!!
@neelakanthapriyadevidasi37575 ай бұрын
Can someone please tell me the most initial pain and or burning feels like. It's quite mild but it's not at all pleasant. It's a sudden burn across my cheek or jaw or even chin sometimes.
@SarahLabbett2 ай бұрын
Did it go?
@chriswamahiu8751 Жыл бұрын
cluster headaches
@Freebird-uo4jb Жыл бұрын
Not cluster headaches! NOT. EVEN. CLOSE! LOL. It’s infuriating when doctors and friends assume that Trigeminal Neuralgia or Occipital Neuralgia is just a migraine headache. Have you ever had an ear infection or a cavity/infected tooth? Imagine both of those pains at a level 20, and it’s not just one tooth-it’s all of your teeth on the top ( or bottom) side of your face. Have you ever been burned by bacon grease or cooking oil? Imagine the pain I described above and now imagine dipping half of your face in searing hot cooking oil. That’s a NORMAL pain attack for someone who has TN. It is pure Hell. This is NOT a headache. It’s absolutely horrific pain.
@margaretpeelen3968 Жыл бұрын
Sometimes the two go together. I have both and ofcourse cluster headache are also extremely painful , the most painful headache there is , nothing compared to migraines.
@oxte7772 жыл бұрын
Hello Dr. My mom just had that surgery done behind the ear, sadly it hasn’t help in any way. Now her pain has expand to the right side. So her pain is on both sides. Do you have any suggestions?
@harryd5650 Жыл бұрын
Sorry to read about it.
@WeillCornellNeurosurgery Жыл бұрын
Dr Stieg can't reply to questions left here - please visit us online and contact his office if you'd like to make an appointment: weillcornellbrainandspine.org/condition/trigeminal-neuralgia
@virginiapresident555 Жыл бұрын
What number can we contact and what insurance do you accept
@WeillCornellNeurosurgery Жыл бұрын
Dr Stieg can't reply to questions left here - please visit us online and contact his office if you'd like to make an appointment: weillcornellbrainandspine.org/condition/trigeminal-neuralgia