Has anyone with TN tried the DTR Procedure with a dentist? If yes what was your outcome? Who did you see? How many times did you have to go back to the dentist? What were your TN symptoms? How much did it cost?
Thanks in Advance for any information… Kari
Hey Kari,
My name is Merl. I’m a member of the Modsupport Team here on Ben’s Friends. TN has been one of what I call my ‘pseudo-diagnosis’. I say ‘pseudo’ because it was not a direct diagnosis but rather a case of “If it’s not ‘x’ and it’s not ‘y’, then it must be TN”.
The neurologist I saw recommended Botox for TN, although I had a wrinkle free face, forehead and shoulders, it did not improve my headaches. The neuro was less than impressed stating “Well, it’s worked for other patients. It must just be YOU”. Often Botox is administered every 3 months to maintain the dose, but after 9mths I ceased the treatment.
I was then told “It could be dental…” and they removed all of my top teeth. It wasn’t dental and the pain continued. I was trialled on all sorts of medications, I was up, I was down, I was sideways and some of those medication just mess with the mind. YUCK. I trialled alternative therapies ie acupuncture, hydrotherapy, manipulative massage etc, etc, etc. None of it worked.
I had had enough of the medicos having a guess as to the cause. I had a physician/a medical investigator do a full, thorough investigation. And through all of this an actual physical cause was established. I’m not going to tell you that having an answer meant I was cured, far from it, but I had a confirmed diagnosis. This gave me some direction to focus on rather than ‘…it could be ‘x’ or it could be ‘y’…’ because in using that theory it ‘could’ be any other letter of the alphabet too.
Now, I have to say here, it took me many years to actually get answers. This isn’t fixed and it never will be and I’ve come to (reluctantly) accept this fact. What I have learnt is how to better manage it all, how to better manage the pain, how to manage my triggers, how to manage medication, how to manage my activity and how to manage ME!!!
Hope it helps
Merl from the Modsupport Team
Thank you for sharing your story. It’s sure is a long battle. Kari
Hey @Karily
It can be a very long battle. Just when I think “Haa, I got this thing beat…” It up and bashes me into submission. I have become hypervigilant in reading my body signs. I’ve ignored those initial signs before, my body tells me “Lay down or I’ll put you down” and if I ignore them further, it puts me down HARD. It can take me a couple of days to recover.
For me it all comes down to management. Earlier on in the year surgery was suggested, but all the neurosurgeon could say was “Well, it might help…” MIGHT ??? Me, personally, I was not prepared to go through all of that for a chance at ‘might’. When it’s ‘medically needed’, then I will have no choice, but presently I manage.
Merl from the Modsupport Team
Hi Meryl,
You said it all very well with regards to this horrible TN. They did say mine was caused from a childhood illness of encephalitis & seizures, but that was only after I had MVD Skullbase surgery in 2001, which didn’t work.
I’m looking into this DTR & T-Scan adjustment of my teeth because my TN began 10 days after I had my braces off in 1998 at the age of 35. I have always felt the braces moved my teeth incorrectly, but until I saw this dentist, Dr.Ben Sutter on YouTube fixing people with TN using these scans, I hadn’t had any of the over 35 doctors I saw agree with me that it’s caused from my teeth. Unfortunately, the procedure is not covered by insurance of any type, so it all out of pocket. But if it works, no mater the cost it will be worth it. I’m hoping to travel to Oregon in the summer to do the procedure. I was hoping to find someone here on any of the TN forums that had done this procedure, but I have only found people through YouTube…. I will keep searching.
Thank you for taking the time to reach out…
Kari Lynch
Lynch.kari@yahoo.com
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I’m not quite sure of the procedure that you’re talking about. But I went to see a dentist in fort Smith Arkansas and he did this procedure with a cold tool ice cold tool and it made me scream and it was just going crazy in my tooth he says yes you have TN. He said I suggest you pull the teeth that is coming from. So trust me if you don’t mind not having any teeth and maybe getting dentures it might be a good idea. So I’m not having any issues from my teeth anymore cuz they’re gone. But here’s the thing TN if you study it, the trigeminal nerve comes from your brain stem and it wraps all around your face and TN mostly hit people on the left side of their face that’s more common then on the right. But you should study about where the trigeminal nerve is and how it spreads.
I have stuffed up sinuses on the left side of my face. So I have to use medications to keep it open and those nerves if they get swollen it makes me have facial pain. So I’ve been using three kinds of meds sprays. If you look up I made some responses and I made a list
Hi Kari,
I saw the dentist on U-Tube who supposedly cures TN with this procedure. I contacted his office and was sent a reply stating that it would be $150 for a phone consult. The procedure itself costs $5K, and it probably takes more than one visit. I would pay $5 MILLION if I had it to cure this pain, but there is no guarantee with it, from what I have ascertained. I really wish I knew someone (other than the few UTube videos of patients he has treated) who have been successful with this. There is never any disussion on the Facial Pain website about this either, which makes me a little skeptical. I live in Phoenix, but would absolutely travel to Oregon if I knew it would work. Sorry that is not a definitive answer. My symptoms are atypical, not the electrical shocks. Just a constant aching, burning, feeling like my jaw is in a vice, plus teeth aches, headaches, dry eyes…and more. But no compressed nerve from an MRI I had years ago. Please let me know if you decide to pursue this. I am more than curious. And it’s funny since my ATN started after a dental procedure…that a dentist would be one to cure it…Good luck to you.
Thanks for your response. I too am in Phoenix & I got to speak to one of Dr Ben Sutter’s patients that he has helped. She lives here in Phoenix in the winter & Oregon in the summers. We are gonna meet up within the month to get to know each other. She said it has really helped her TN along with a special chiropractic adjustment of her atlas. Her TN was in her lower branch, where as mine is in my middle & upper. I just can’t sit here and do nothing, this pain is gonna kill me if I do…. 26 years is enough…
I forgot to include that you can get oral anesthetic gel. I just buy the equate brand but when I first got trigeminal neuralgia it really settled down. Now I use it and I put it on my face around my eye and my eyebrows on my nose you don’t have to like use a lot. Use a warm face cloth on your eye and I use vanilla chamomile and if I’m drinking it I breathe in the steam.A warm face cloth on your eye.
Hi again,
I got several responses directly from Dr Sutter this AM from my questions on his YouTube video. He seems to be the real thing.
At this point I plan to start a spreadsheet some how to keep track of who all I’m talking to about this, my computer skills are not what they once were, so it will take me time to learn, plus with my pain I have to pace myself. My hope is to get this DTR T-Scan & upper neck skull chiropractic done so that I can have my life back & I can start advocating for TN patients. The insurance industry should be looking at paying for this before they dump tons of $$ into MVD/Gamma Knife & Medicine…. It’s a very non invasive approach that would rule out so much before getting invasive…
No I’m not willing to have my teeth pulled. The procedure I’m talking about is on YouTube…. Look for Dr. Ben Sutter & TN for videos, DTR & T-Scan. It’s a bit confusing at 1st to navigate, I’m not so computer savvy any more, but I was able to watch the different videos he has done. What I found was he is a very compassionate dentist who is really trying to help people. What he has done for all the people suffering from TN is absolutely amazing. On top of that he has answered my questions directly himself. I am also in contact with his office & I have spoken to a patient of his that he has helped who has TN.
So I am continuing to move forward in my research & having some HOPE again is truly amazing…
Thanks for responding. I am very curious about this treatment. It’s amazing that you live in Phoeix too! Please let me know how your meeting with Dr. Sutter’s patient goes. Or even if you’d like to have a support meet up as well, I’m more than willing to do that. I actually live in Gilbert, but have no issue with driving anywhere. BTW, I have had this over 30 years. After going down so many rabbit holes searching for both the cause and a cure, it’s exhausting. I take 5 different meds every day. Just takes the edge off, but still there every moment. Please keep in touch! Best regards, Veronica
Veronica meeting up would be so cool. Here is my phone number 505-410-4141 send me a text & I will text you when I get a meet up set. We 3 can meet in the middle. I live near HWY 101 & I-17 & the patient lives in Gold Canyon, AZ I’ve always wanted to be in a TN Support group but before AZ I was in NM & I couldn’t find a support group there.
Looking forward to meeting you,
Kari