Trigeminal Neuralgia - from KCPQ-TV13 Seattle by Lara Yamada

[flymasterA]

Update. 18 months now and not a twinge of TN pain, and no side effects. Unless you consider eating and talking too much- lol. Neither talking or eating pain-free will ever be taken for granted again. No more meds and no more zombie.

[BeefBurgers]

The reporter says that MVD was his second surgery. Does anyone know what his first surgery was?

[wyzwoman]

I see most of these videos and online info state that it is only on one side. I have had it occur on one or the other AND both sides at the same time - like right now. i have had an mvd in 2003, which worked for a short time. then it came back intermittently and with meds controlling somewhat. i am going to try craniosacral work before thinking of an another surgery, i am glad that this guy had a good outcome; wonder how he is doing now...

[flymasterA]

@wyzwoman This is for you, not for Trud. My research turned up lots of statistics about TN. You fall into a small catagory. I don't know who performed your MVD, but since your TN re-occured, your TN may be a symptom and not the problem. Why it worked temporarily needs to be evaluated. Dr. Kopitnik found 2 blood vessels impacting my TN nerve and fixed both. I 'went under' in dire pain and woke up pain free. If the TN was a symptom, the pain would have stayed. I am TN pain and medication free.

[wyzwoman]

@flymasterA thank you so much for your information, I appreciate all info I can get. I did see my neuro a day ago and all he did was up the dosage - again. I feel like a zombie most of the time. I asked about more surgery and he wants to works with the meds first - which I DON'T!! I did have the craniosacral therapy and that did relieve much of my pain. I took the name of your Dr and may have to just go there! I wish he was closer.

[flymasterA]

@wyzwoman Also, I too was having problems with being a zombie. I own my own consulting business in a competitive field and I have to be sharp to compete. The meds and pain had me down and out, couldn't make a sales call or teach a seminar. Couldn't eat, sleep, drink, shave, brush my theeth, you know- the whole thing. I recommend an evaluation of your circumstances and history by Dr. Tom 1st. If he thinks he can help you, go for it. I was back on my feet at work (desk job) 2 days after surgery.

[wyzwoman]

@flymasterA Your information sounds so encouraging. I am just so tired of all pain and meds. my mom had it until she passed away; I don't want to be that. being alive without worry of the TN would be awesome. thanks again flymasterA

[HeyTrud]

@DonObeWan3 One round of Gamma Knife sells for $150,000.00. One treatment, One round of MVD with everything costs 50K. How does a doctor get up enough money to own a hospital since I was an asset based lender? Dr. goes to the bank, mortgages his home and gets investors; i.e. other MD's that have tons of money to invest. Investments like this have big time write-offs. Real Estate etc. Money is my expertise and I dated a MD who told me every MD gets perks for writing simple scripts, etc.

[HeyTrud]

@DonObeWan3 WTF are you talking about? I want one doctor in this world to cure TN. TN is an incurable disease idiot! MS is incurable.There are only treatments. Wake UP! It comes back time over time again! I get 1 month reprieves here & there. There is NO CURE idiot. I would give my first born because he's such an ungrateful brat. He cannot phantom pain in someones face. No matter what the doctor says, he doesn't believe it exists! He's twisted, by his father, I divorced from beatings from him!

[HeyTrud]

WTF! 4 procedures later met with my neurosurgeon this afternoon, and he told me there is NO CURE for TN. I cannot believe in this great big world that the only thing I can depend upon are pain relieving drugs who destroy your body & mind. The only HOPE I got today was he was going to Chicago, my HT to meet with another Neuro-surgeon that came up with alternative. When patients have TOO MUCH work done on TN nerve, WE end up with phantom pain and numbness! No lemonade stand here now... NONE!

[flymasterA]

@HeyTrud Is your TN caused by MS? Even if it is, I would give Dr. Kopitnik a call. What do you have to lose? His reputation is that he's the best. I believe it- I've been under his knife. On top of that, he's a wonderful, caring human being. Don't believe me? Sorry, other than that, I can't help you.

[HeyTrud]

@flymasterA Doctors can only TREAT TN. There is no cure for TN. There is no cure for MS. Maybe someday there will be a cure for TN & MS. There are only treatments of diabetes. There is NO cure for diabetes. There is no CURE for cancer, there are only treatments for cancer. There is no cure for Heart disease, there are only treatments for heart disease. Every SPECIALIZED doctor does the same procedures over & over again.They only 'tweak' treatments.There will never be a CURE for every disease.

[flymasterA]

@HeyTrud Like I said- clear your head for just a moment. For me, TN was not a disease to be cured. It was a mechanical problem- blood vessels rubbing on the nerve. I DIN'T NEED A CURE! I NEEDED A FIX! I am NOT CURED- I AM FIXED! Can you understand that? Yes if you have some other form of malady, it may not be curable or fixable. If MS is causing TN, TN is a symptom, not the disease. You don't answer my questions, just spout your beliefs. Your meds have turned you into a troll. Get fixed!

[flymasterA]

From a happy and cured TN sufferer for 3 years.

PLEASE, if you suffer TN, get in touch with this surgeon:

Dr. Tom Kopitnik, Mountain View Hospital & Neurosurgery

Casper WY 307-266-4000 VERY reasonable with rates and payments.

[HeyTrud]

@flymasterA TN comes back, there is NO CURE! TN DOES COME BACK, AGAIN AND AGAIN AND AGAIN! DON'T BE SO SMUG!

[Purrrsuasive1]

@HeyTrud There are surgeries that cure TN.

For one, check out Microvascular Decompression

also known as MVD. MANY patients have had the

surgery and live TN free lives. I am getting so close to

finding a Neurosurgeon and finally have the MVD surgery.

[HeyTrud]

@Purrrsuasive1 I know this!! I've suffered for 9 years off & on now! I've had 2 Radio surgeries, 3 MVD's thru the back of my head going to my brain, I've been on every medication available, and NOW? I have bi-lateral TN. Both sides of the face! TN COMES BACK! TN COMES BACK! I've been to 4 Neuro Surgeons that stole 300K from my Insurance company, and only 1 doctor whose cell phone number I have 24/7! I have the 1 & only doctor that does not give up.

[HeyTrud]

@Purrrsuasive1 TN CAN STRIKE AGAIN AND AGAIN! You are ignorant if you think it cannot come back! I must get another procedure in my face now! If they cut the nerve, guess what? You end up with "Phantom" pain. Ask any soldier what Phantom pain is, it's the loss of a limb. TN pain is nothing compared to Phantom pain you effing idiot! No one is ever out of these woods. I have it on both sides of my face! You can 2...think

[Purrrsuasive1]

@HeyTrud Your story is your story. There are many

TN patients living without TN after MVD. I am in a very

active TN support group and know what I know from other

sufferers. Again, your story is your own. I am not going

to respond to all your other post back at me. Sorry your

surgery failed you.

[HeyTrud]

@flymasterA If you are so lucky to find a doctor that will take payments, you are truly blessed. However, there are not too many of them around. They all want insurance. Even at so-called govt hospitals. See the social workers in the hospitals. and try BEGGING! BEG her or him. They will find a lost spot if you have all of your medical records and are prepared with your case. Be prepared with MRI's and make it easy for them to take you on.

[HeyTrud]

@flymasterA It's not the DOCTOR that cures TN. The doctor skills has little to nothing to do with a successful outcome, as every doctor performs the same procedures over & over again. There are no NEW treatments yet. There is NO cure yet. There are only treatments of TN. Does everyone understand that each patient responds to the same procedure differently? One gets MVD & is successful. Another patient gets the same procedure, and that TREAT does not work. Doctors treat TN the exact same way.

[flymasterA]

@HeyTrud I'm beginning to think you are just a troll. You know nothing of doctor's qualifications, what makes one better than another. They all strive to be the best (or should), but some excell. "Everyone" understands more than you do. Only your negativity keeps you from getting 'repaired'. You admit that "one patient gets MVD & is successful". You just blew your stance. Dr. Kopitnik is 98% successful after 100's of MVDs. Call him or suffer. Up to you.

[wyzwoman]

@flymasterA did you have to have a neurologist refer you to Dr K?

[flymasterA]

@wyzwoman Actually a flyfishing friend on the east coast, a lab technician, recomended him as the best in the country. He said he trained under him while he was in Texas. He then told me where he practiced and it just happeded to be my home town. I did some more research and concluded that he would be my best bet. He was so interested in getting me fixed, even though I was a self-pay.

I am fixed and it was extremely reasonable financially, and the surgery was not traumatic at all. Call him.

[HeyTrud]

When you begin to call around to find the best Nuero-surgeon, you must always ask if the doctor primarily works on Trigeminal Neuralgia. Don't waste YOUR time with doctors that just "dabble" with TN. They get a lot of money for these surgeries everyday. Money is the best motivator. So, get the best, research him, the hospital where he attends, and the staff. Also, you need to call the Radio dept and make sure they have a thin-cut MRI machine to detect TN. Otherwise, keep shopping around

[Purrrsuasive1]

I am so lucky to be having a bout of TN now. Started 2 days ago :( Ran to neurologist yesterday and he gave me shots of botox, around my scalp in what he calls, "chasing the pain" In the mean time, Trileptal does work for me and could work for you, if you haven't tried it. It does make me tired, but at least it brings the pain down enough to eat something and get some sleep.

[HeyTrud]

@Purrrsuasive1 I am happy that you found what sounds like a great doctor. The Radio procedure costs....$150,000.00 as of this publish. Money is the motivator. Doctors are buying this equipment and renting space from hospitals. Medicine is a business, don't ever kid yourselves. However, I have found older doctors to be either very dedicated or very crabby that they are still working for a living. blessed be to you and yours...

[HeyTrud]

@Purrrsuasive1 Botox was first used for headaches. Botox is also Botulism, think twice before you get a does of botulism inn your head!

[Purrrsuasive1]

@HeyTrud Botox was first used for cosmetic reasons when

migraine patients were seeing relief from their migraines and

that's when neurologists started looking at Botox for migraines.

Botulism doesn't scare me as much as my TN pain.

[HeyTrud]

@Purrrsuasive1 Then your TN pain is minimal at best. TN comeS back and around over and over again. Just when you think it's over, TN COMES BACK!

[HeyTrud]

@Purrrsuasive1 Botox was designed & made for use with Migraine headaches. They jumped on the bandwagon and started using Botox for wrinkles, look at idiotic Pelosi's face? But, Botox is not completly safe for your brain idiot! Botox can hurt your brain.

[Purrrsuasive1]

@HeyTrud  WRONG again.

[HeyTrud]

@Purrrsuasive1 Your botox shot is short-lived. I've had those too. TN COMES BACK

[flymasterA]

There are few blanket statements that cover all the bases. I've been suffering TN for 3 years, had surgery (MVD) Thursday, woke up 5 hrs later pain free at 7pm, was walking the halls by 9:30p. Walked for an hour the next evening, and they let me go Sat. am. Fortunately, my surgeon is recognized as the top in this procedure- Dr. Tom Kopitnik- and now I believe the reports.

[HeyTrud]

@flymasterA I had MVD twice, 2 times! TN, can still return, there are no guarantee's when it comes to TN. N O N E I now have TN on both sides of my face, I fell and hit my head. And now it is bilateral, which means both sides of the head which is very, very rare. try not to have any accidents if that is possible with drunk drivers, tripping over cords, ice skating, skiing, anything that could injure your head. TN strikes back!

[coppergirl916]

I have a new kind of TN... it goes away !!!!! I had it for 2 years straight then January it disappeared..Now its April and i blew my nose and the shock has returned. It ran in my family which is another new condition too. 4 generation history of it and it my go 5. If any Neurologist see this in the Sacramento,CA area want to do tests on me please feel free to contact me about my TN. I have NO INSURANCE nor can I get any but i need to treat my Neuralgia!!!!!!! before it hits in full force again.

[HeyTrud]

@coppergirl916 Its not a new kind of TN. TN comes and goes even after many procedures. Try Dr, Alskne pronounced Ox-knee at UCSD in La Jolla Ca. He might help you with no insurance, afterall it is a govt hospital. Go see the social worker in the hospital. The govt should help you somehow. If your in that much pain, beg

[flymasterA]

@coppergirl916 Mine went into 'recession' also (3 times), then would return 3 or 4 months later, and this last time was with a vengance. I had two blood vessels impacting the nerve, and one had worn it's way through the nerve. Doc fixed both and I'm pain free now. Yeah, yeah...time will tell. Downside- I'm pigging out because it's enjoyable eating again, and I'm cajun, so I love food.

[HeyTrud]

@coppergirl916 Beg, Borrow or Steal the money! TN pain will kill your soul...I know, I am still fighting the hard fight, for 8 years! Hospitals have social workers. It is their sole job to help people without insurance. No doctor is going to call you, you MUST CALL ALL OF THEM. Medicine is a business. Do you think Obama's crazy free health insurance will cover you? No it Will not, I checked already. They are the govenment, they know nothing about people.

[HeyTrud]

@coppergirl916 I hate to admit this, but Pot does help. I heard it does.

[HeyTrud]

@coppergirl916 No doctor is reading these posts! Start calling hospitals and talking to social workers. First find a doctor that specializes in TN. Then BEG the surgeon and the hospital to take you as a pro-bono patient case. Good luck, there is so much money in this TN game. Begging helps

[flymasterA]

@HeyTrud I feel sorry for you, really. I am personally aware of the stress that the pain and meds cause. I am not smug, just stating facts. When I woke up the TN was gone. Maybe it will come back, maybe it won't, as it hasn't with many others. Trud, don't give up! Quit stressing and calling people names. Take your own advice-call Dr. Kopitnik to see if he can help you.

[HeyTrud]

@flymasterA It's so bad I cannot fly. My doc who specializes for the past 25 years devotes his life to TN cares as he is now 73 yrs.old. He surfs every morning, and I have his home & cell numbers. If there was a CURE I'd be on the table first. Today, the only hope I have left is to wait until Fall. He must fly to Chicago and perform with a Neuro whom I was a Patient of, 22 years ago. He is going to replicate the same procedure here in CA after he gets permission from the board. I PRAY TO GOD.

[flymasterA]

@HeyTrud You told DonObe that you want 1 doctor to cure TN. You are the idiot, and you deserve to suffer if you don't listen up. My doctor cured me. No one can promise something won't come back. But my surgery was 100% effective- 2 blood vessels impacting the nerve. Cut one and isolated the other main one. Went under in dire pain- woke up with 0 pain. 2.5 mos. later- 0 pain. If you want hopelessness and pain, be my guest. I'm pain-free. Who's the idiot? You sound more like a troll now.

[lostbully]

WCB Workers Comp say I only get 50% that's it...I have to fight for the rest....I say 85% 15 leeway because I can still spoon feed myself and wipe my ass.

[coppergirl916]

@lostbully ...I was trying to get on disability but because they said that i could work in a room by myself... I could work..Medication would not let me walk, think, or remember so I fought and won, but still no insurance because my husband makes more than $8 hr. no insurance and my husband has none either. WHAT HEALTH CARE!

[HeyTrud]

@coppergirl916 do you have asthma? You can get on Workes Comp if you have Asthma. TN is so a rare disease that many don't get it at all, until they get it themselves.

[coppergirl916]

TN for 1 year now. My father had it, his mother had it, his sister had it, they are now all passed on now. Now I have it, my niece thinks she has the first signs of it now. WHAT DO U MEAN THAT IT DOES NOT RUN IN THE FAMILY! Now I am scared for my three children and grand baby.

[flymasterA]

@coppergirl916 You should report this to the medical profession, or else how would they know?

[HeyTrud]

@flymasterA Call the Mayo clinic, and see if they will treat you for free

[HeyTrud]

@coppergirl916 This is a new, passing it onto generations. I think my son will get it too. He is showing signs that he won't admit to. I did not realize this. I believe you though. I got it from a 100 pound box thrown onto my head. Of course it cannot be proved by the Insurance company though, it happened at work.

[HeyTrud]

@coppergirl916 Yes, tell everyone, especially Mayo clinic, they will study you for free too

[HeyTrud]

@HeyTrud Call, call... and GO, go to every hospital that has the best doctors. You may just catch a social worker that day who got flowers from a new date! doctors can be moody, you have to hope they are sleeping and not drinking to many Martini's the night before. Nurses, well they are a category for another day. Beg, beg, do what it takes to get out of TN pain, otherwise you will slowly loose your mind.

[flymasterA]

@HeyTrud I got released by Dr. Kopitnik today. Totally pain-free and 98% healed up from the surgery. What an incredible surgeon and hospital. Incredible nursing staff in his new hospital. At this time, I would stake my life on the fact that he's the best chance anyone has of getting free of TN.

[HeyTrud]

@flymasterA HIS NEW HOSPITAL???? A doctor with his own hospital? what does this tell you? He's made millions on TN pain and procedures.

[crazymerlot]

I suffered for 8 years and just recently had an MVD done.

Thank God for the surgery, it does work! If only I had known about it years ago.

[HeyTrud]

@crazymerlot It could still come back after a few years, as did mine.

[HeyTrud]

@crazymerlot TN can still come back after MVD. Don't be so dam CONFIDENT. Mine came back 4 times now with all of the procedures that I've had, TN is now on both sides of my face, which is rare itself.

[flymasterA]

@HeyTrud Before committing harey-carey, check out Dr. Tom Kopitnik in Casper, Wyoming. Not to be making a pun, but he's been the cutting-edge of MVD for the past 10 years. The hospital will work with you for payments, and so will he (as they did for me).

[11chorizo]

I would expect the Dr. to say "it has nothing to do with what you eat." However, Dr's diagnose and do not cure. I suffer from GN and researched myself and have found that eating habits play a large roll in how I feel. I believe that inflammation effects people in different ways and in my case attacks the GN nerve on a microscopic level. The pain in the esophagus was incredible, but since I changed my diet to anti-inflammatory I have been 95% pain free. Look up inflammation and food, you'll be...

[quill444]

In addition to severe migraines, I have endured "Atypical Trigeminal Neuralgia" or ATN for nearly 37 years. My first "attack" began when I was in Junior High School, at age fourteen (Sept. 1972), and they continue to this day. I used to joke that, "The first twenty years was the hardest" but these younger doctors today, they often don't understand humor of any sort! I would say that the most difficult aspect of living with this condition is the profound sense of isolation. --Regards, John Quill

[weichersb]

HI John,

I agree, most younger docs have the sense of humor part of the brain removed during school. Hope the story helped in some small way,

Brent

[HeyTrud]

@weichersb who cares about their humor, you want their best medicine

[HeyTrud]

@quill444 Agreed, isolation at it's very best

[descolada9]

I've suffered TN for about 14 years now and it took nearly 10 years to diagnose properly. Currently experiencing an attack and painkillers aren't helping. I'm kind of hoping I can have MVD. It's either that or good hand pistol to use to blow my brains out. The pain is horrific.

[weichersb]

DO they have you on Tegratol at all? Only thing that helped me until the MVD. Almost two years and pain free to this day. Good luck

Brent

[HeyTrud]

@weichersb Tegretol will make your life miserable if you are sensitive to medications side affects.They will keep you in a daze and worsend any depression you may have due to TN pain. I lost 7 years of my life to Neurontin.

[chm97chm97]

Hang in there! There is hope. I have had TN for -4- years now, I am fortunate diagnosed immediately and confirmed w/ MRI. I live in Chicagoland and I have access to excellent doctors, you may need a better Dr???. What meds are you currently taking? What strategies have you and the Dr designed? 14 years is a LONG LONG time, are you healthy enough for surgery?

Hang in there !

[HeyTrud]

@chm97chm97 try Dr. Robert Alskne pronounced Ox-Knee at UCSD in La Jolla, California. Dr. Alskne, only works on TN patients and devoted his entire profession to TN. Dr. Alskne walks on water and does whatever it takes. He is Jesus re-incarnated.

[HeyTrud]

@chm97chm97 It is also called a thin-cut MRI. this MRI only came out about 5 years ago too. Not all hospitals are created equal. Most hospitals do not have the best of MRI'S

[HeyTrud]

@chm97chm97 I never stated that I would commit harey carey. I already have the best doctor, he walks on water. TN has returned 6 times in the last 8 years now. If Dr. cuts the nerve completely, it is the same as having a lost limb, you get the same pain but the loss of the nerve gives you phantom systems. Like a soldier that loses a leg, his leg still hurts no matter what. It is a brain/body connection that gets lost if the nerve is cut

[ssuejones1]

@descolada9

I've suffered from TN now for 18 years. Recently I have discovered an endoscopic procedure (EVD) that is done at the Skull Base Institute in Los Angeles. You may want to consider this to be a more thorough procedure from that of the MVD. I'm hoping to have this done myself.

[HeyTrud]

@ssuejones1 I've suffered for over 8 years now. Dr. is going thru my face next time, and I now have bi-lateral TN, very rare, on the other side of my face. I don't wish this pain on my worst enemy, even the crazy liberal democrats.

[HeyTrud]

@ssuejones1 I've had the EVD procedure at USCD in LaJolla; twice, AND it came back twice too. I even had Radio surgery twice, and TN came back.

[ssuejones1]

@HeyTrud

[ssuejones1]

@descolada9

[HeyTrud]

@descolada9 Please pass the gun...although it is the highest "suicide disease" you cannot give in. You need a pain clinic or pain doctor..

[lostbully]

2 years ago I was diagnosed with TN, had it since 1991.....Took a nailgun through the head. 3 1/2 inch twister clipped this nerve...Life has been hell ever since....Greetings from Chilliwack, British Columbia

[HeyTrud]

@lostbully At least they caught it before a dentist stole 10K from your pockets. Head injuries can cause TN and TMJ as well. Insurance companies will fight you head to head on their best days and deny you got it from an accident on the job. Like a nail gun. It cannot be proven by your workers comp company that your lousy employee hired. They'd rather pay lawyers than pay out for real accidents. What a joke.