I have Tourette's syndrome, or at least 'had' it until about a year ago. While my symptoms were quite severe, I now, with proper care, am completely symptom free.
I have been using an oral appliance that has eradicated my symptoms, the appliance being based off the work of Dr. Anthony Sims http://www.absimsdds.com/
My orthodontic specialist spoke to Dr. Sims, and made a similar appliance for me, and my tics stopped.
I can't believe this, and didn't believe the videos on Dr. Sims website when I saw them, but PLEASE check it out before you judge this.
To give you an idea of the extent of my Tourette Syndrome experience, I viewed a video of myself recent, where I would tic on average 6-8 times in 2 minutes.
Which, in a 16 hour day would be 2,880 tics, a not-so-insignificant number.
Furthermore, my tic (main one) was a serious jaw-wrench, which led to severe headaches, intense lacerations inside my mouth (had to have teeth taken out to stop the deep lacerations), and a loud cracking in my TMJ.
Since settling in with this appliance, I might have 1 in a whole day, and often never, and all the internal "neurological storms'' that can come with tourette syndrome are now gone.
Here is a paper on the treatment:
reply with any questions.
This has been a dream come true for me.
I appreciate your desire to protect people from scams, honestly. I also understand the frustration, and the disbelief. I actually felt somewhat angry when I encountered the website, which was given to me by my orthodontic specialist.
I have no connection with Dr. Sims. He lives in California, I live in British Columbia in Canada. I am not an orthodontic specialist, and cannot make the appliances. I have no means of making money of this, and don't even know how I could, to be honest.
I expected people to get angry, to not believe me, and even to insult me, for how could a physical appliance help what is taken to be a neurologically-based condition. I myself went to the University of British Columbia Movement Disorder Clinic for years, have taken multiple drugs for TS, and thus had a hard time believe it could even be possible.
However, as I did, prior to accusing me of being a charlatan, one who is attempting to somehow make money off of people's sorrow, please read the paper that I linked, and view the videos on the orthodontist's website.
Then, after viewing and reading, and considering, please feel free to ask any questions, and find out if I am trying to "scam people for their money" and how, and then feel free to post all over the internet that I am doing this, and how I am doing it. You would fully be in your right to do so.
Yet, if you choose not to actually investigate it, please do not prevent others from doing so, as it may truly improve their quality of life.
I wish you well and welcome any questions or thoughts.
In addition, if your 'consultant' is a medical professional of the classic variety, he should have access to Dr. Sims other published paper on the appliance. Name and abstract below:
An intraoral neurocranial vertical distractor appliance provides unique treatment for Tourette's syndrome and resolves comorbid neurobehavioral problems of obsessive compulsive disorder.
Sims Anthony B; Stack Brendan C
Medical hypotheses 2010;75(2):179-84
8865 Stanford Blvd., Suite 131, Columbia, MD 21045, United States. ***@****
Evidence has existed for many years that individuals with Tourette's syndrome (T.S.) have associated neurobehavioral comorbid disorders. Though these disorders are not necessary to give a definitive diagnosis for Tourette's syndrome, many patients present with clinical signs of additional problems. Many believe that Tourette's is a neuropsychiatric disorder with symptoms originating from the brain or basal ganglia. Some of these coexisting conditions include attention deficit hyperactive disorder (ADHD), obsessive compulsive disorder (OCD), depression, sleep disorders, and enuresis. We hypothesize that an intraoral device can be utilized to eliminate these associated comorbid neurobehavioral signs and symptoms. Use of this device, called a neurocranial vertical distractor (NCVD), results in the elimination of unwanted neurobehavioral disorders via normally existing trigeminoreticular fibers and tracts (Fig. 1).
hey FNPin MAple
i see Dr.stack in Washington, he made me an appliance. it definetely works. my only problem is flying across the country to see him for consultations. who do you see in california? i also live in BC by the way, so california would be a much quicker trip for me. any info on regarding contacts for dr.simms or for your specialist would be greatly apreciated.
My husband has one of Dr. Stack's appliances. His tics have decreased by 90% and he's only had it for 2 weeks! We are very happy with the results. Yes, it's a pain to fly from Iowa to Virginia, but it's worth all of the time and money. My husband is going to try and see a local tmj specialist to do the maintenance on his appliance. Hopefully he doesn't mess it up! Glad others have seen improvement in these oral appliances!
My husband had one of Dr. Stack's appliances and his tics are reduced by at least 90% and it's only been 2 weeks. We are from Iowa and hope to have a local tmj specialist do maintenance on his appliance but will definitely continue to make the trip to Virginia if need be. It's worth it. When we were in his office a 13 year old boy was there with severe tourettes. We saw him the next morning after his appliance was in and his tics had already decreased by 40%. Dr. Stack was adjusting his appliance to get even better results. it's really quite amazing.
I have a grandson Anthony thats 14 and with the same problem I to found Dr Stack's videos and was amazed We tried the stick method first and it worked Our only problem was Dr Stack was to far for us to travel so I called and did some searching for myself for a Doctor around us After many phone calls I finally found one that was willing to try it.God works in small miracles.Anthony has had he's 3 rd visit and he has improved 90% This is no fast money deal.This is no scam this is real.Don't put down someones comment if you don't no the facts.I found this comment after I already made a post about Anthony the other day.Those who know about this procedure will only tell you that nothing but good has come from it.
Hi, i'm from Massachusetts. Does anyone know any other dentists/ doctors that do the TMJ appliance for Tourettes other than the ones mentioned? I'm looking for a doctor closer to me. Can someone tell me the costs they paid for the appliance? Which doctor did you see?
I called Dr Stacks Office today and his office said it would cost between $4700 to $6300. The thing that has me worried is that it isn't guaranteed and its alot of money to throw away if it doesn't work. (especially as i don't have that cash available) I have Tourettes since I was 7 and i'm almost 40. It definitely got worse as I got older.
Hi I have a question. Have you been able to get your grandsons off of meds since he has the appliance. I have a daughter on meds but Dr Demerjian said he does not recommends taking them off meds so my question is what's the point then isn't the home idea to get off meds with this appliance?
Sounds odd to me, honestly. My understanding is, as well, that the whole point is to be able to manage the symptoms of tourette's without medication.
I had gone off medication for some time prior to encountering the appliance, which was horrible as I hadn't been off meds in years.
However, while I would have had to go back on medication, as it was getting completely unbearable, I now do not take any medication at all.
The cost, in total, I can't quite say. There was a monthly payment to be monitored by my orthodontist, which was $50/month for one year.
Then, the appliance went through some failures - cracking and such - and I had to then have it repaired.
In the end, with my coverage through medical/dental, the initial cost was not that high, maybe $350, but then there was the monthly, and repair, costs.
I am currently awaiting contact with my Ortho specialist so I can get a more permanent piece (the one I have is large and moveable). We were waiting to see the effects longterm, etc. before this step would be taken.
My daghter has had sezuires for 11yrs and is now 31yrs old. My friend who is a Dentist, Ortho and TMD/TMJ specialist is now treating her with the appliance you re talking about. The first day she wore the appliance we noticed a huge difference in her motor skills, speech, etc. If anyone in Oregon is dealing with sezuires and they tell you nothing is wrong with you...PLEASE!!!!! look into this treatment. We are seeing Dr william Lee willis in Roseburg Or. He is giving my daughter her life back!
You mentioned Dr. Sims is located in California. Did he move from Cali to Maryland? The Dr. Sims I've seen online helping with Tourette's and other movement disorders is in MD. I've got an appointment in a couple weeks with Sims and am naturally hesitant. He quoted me 4404.00 out of pocket. My problem is oral dystonia caused by a wisdom tooth pull. I tried Dr. Sims/Stack tongue depressor method and was shocked that it worked for a moment. The facial muscles relaxed, the tongue returned to normal and I could speak. I get the same results with Ambien (which no one has yet to explain). Anyone else know of Dystonia patients who've seen Sims or Stack?
I apologize, I had to look up dystonia in order to know what you were speaking of. And, while I battled with chronic insomnia prior to using the mouth appliance, I no longer have that issue either - for the most part.
I am happy to hear that you had some positive effects when attempting the simple test. God willing, this will help you.
As for his move, I am not sure. I never actually spoke to, nor worked with Dr. Sims, or his colleague. I only had an appliance built from the academic paper, and a conversation he had with my specialist in BC.
I really wish I could help my friend. Apologies that I cannot.
Best of luck with your treatment.
I think it's good to look in to the least physically stressful removal which might not be possible. Mine was pulled and I wish I'd had it surgically extracted. I think more people than not have had no issues with dental extractions. I'm in the 1% of....oops. No fun, but things happen.
I would like to know if anyone with Tourette's or child with Tourette's has had struggles academically. My daughter is in the ninth grade and is so far behind school just does not much more to offer. I wanted to know if anyone has heard of any place or anything else I can do to help her improve.
I just wanted to chime in on this discussion because my daughter is a patient of Dr. Sims. She also had seizures, insomnia and various other neuro symptoms that have been greatly improved with the appliance. Her case is still very much a work in progress, but I can attest to his wisdom and quality of care. For anyone undecided, you could try various heights of popsicle sticks at home. If you experiment, bring your lower jaw forward as you bite down on the sticks and test this for a period of time to see if it reduces the symptoms. You can see testimonials under the YouTube channels: DoctorStack, Anthony Sims
I got my daughter the appliance, she has been wearing it for two weeks now although she won't wear it to school but as soon as she gets home wears it till the next day. It has not helped her. My question to you is how quick did this relieve you from having to tic. We went to get it adjusted already and to no help at all. Any suggestions
Hi, I haven't tried to appliance. I'm a 35 year old male that's had tourettes/ocd since around 8 or 9. My suggestion would be to try a glutamate antagonist...like memantine or riluzole. They seem to have less side effects than the typical med's used to treat ocd/tics. I've been on paxil since I was 15 and risperdal since I was about 20. They both just basically kept the edge off. The sexual side effect ***** though. No sex life at all. And I'm still not half as productive as I could be if it wasn't for the ocd and tics. From what I've read glutamate antagonists get more to the root of the problem..as ocd and tourettes patients have high levels in certain parts of the brain. Unfortunately I don't have insurance...so I can't afford any glutamate antagonists. I would try Dr. Sims solution, but it doesn't seem very practical to go around for the rest of my life with an appliance holding my jaw open and out....which I have to open my jaw and jutt it out quite a ways to get relief. Anyways, I hope your daughter finds something that helps her soon. I know how tough this condition can be.
I realize that the thought of having an appliance in your mouth may not be a comfortable thought. However, I do not go around with my jaw jutting out all the time. In fact, over two years in now, I often will only wear it when I sleep, and maybe for an hour during the day.
Given the side effects you are recounting, I would greatly recommend at least trying it out.
I had taken haliperodol, resperadone, and tetrabenezine for years (obviously not at the same time) and have experienced the numbing side effects of these drugs.
Currently, I take none - at all - and will, it seems, never have to go back on them.
Further, once the appliance has been worn for some time, as you will find in posts above, they can often adjust the jaw through braces, removing the need for a mouth appliance.
I haven't had it done, but it is performed.
I hope this clarifies the issue.
My son has had his appliance for about 3 weeks now. Our dentist in Texas is working with us copying Dr. Stack's work. I have a couple questions
1) How long did it take to see a significant difference in your tics?
2) We are having issues getting him to eat with it in. Any tips?
3) now he has an ulcer from the appliance, he can't leave it in right now till it heals - will this mess things up? So far the changes we are seeing are in his disposition, much more tolerant of everyday life. Been more active and engaged in life and friends :).
Sorry for taking so long to respond.
My early experience with the appliance was odd. I would have a slight reduction in tics (major ones), but still felt "most" of what I've taken to be 'neurological storms' - a term I picked up a long time ago to express how I often felt with TS.
I found that my tics began to be reduced within days. However, upon removing the appliance, I would have a flood of them - a very uncomfortable experience.
I could not, and did not, eat with my appliance in. I found it far to difficult. So, I would only remove it when I ate. Other than that, it stayed in.
As for the ulcer issue, I would talk to your doctor. Ulcers are caused by a bacteria called H.Pylori and not from what people believe from times past (stress, bad eating). If your son actually has ulcers, please ask about H.Pylori, which can be treated with a 3 week program of antibiotics. I have gone through this treatment, and it works wonders. Talk to your doctor and bring this up. As far as I understand actual ulcers, it is impossible that the appliance could cause an ulcer. Please research the cause of ulcers.
I do not know the extent of your son's TS, and am far from a specialist in knowing about a condition I myself have.
All I can say is that, now three years of using the appliance, my life is shockingly better. I still have TS resurface time and again if I do not keep my appliance in for longer periods (kind of a re-setting). But if I am diligent using it (I don't have dialogues with it in anymore, but rather when I sleep and when I am just doing normal things - driving, cleaning the house, reading, etc) my life is significantly better.
I hope that this helps somewhat. As I have two children, since I started this post, I have empathy for the position you are in. I worry, as TS is passed on genetically, there is a very good chance my children will suffer from it. I am, however, overjoyed that I might be able to offer a way out (somewhat) from the trials they will experience.
Would this work for my 8 year old? I wonder about the growth of his mouth and jaw and the overall cost of this appliance. Of course, at this point I am willing to try anything but certainly don't have money to throw away... Do they accept insurance and will insurance cover any of the cost?
I can't tell you it would work. Sorry. All I know is it revolutionized my life, and given I have two children, ones who will likely battle with the same thing, I am going to have this intervention in mind.
The particulars of your case, which must be hard for you, are unknown to me, and I am merely a patient who has used this kind of appliance.
I can only express my own experience.
But, that is why I started this thread, hoping others would post so the word could spread.
As for your insurance, sorry Jan, I can't know that either.
I live in BC, Canada, and work for a government subsidiary. Therefore, my insurance status may be radically different than yours.
Speak to your provider, get a practitioner to test for coverage.
Hello jan. I have a 15 yr old with TS she has had the appliance for two years now and I can't say it has helped her. When I take her to get them adjusted she says they do reduce a bit but that same day at home they start up again. Even with her being on meds. This does not mean it can't work for your child though so just research a bit more or call one of the Dr's that provide this. As for the cost I payed 4,000.00 and for every visit after that is abt 250.00 to 300.00.
Best of luck.
Hi Rob, I am sitting here at 3am trying desperately to learn as much about Tourette's as I can. My 12 year old son was recently diagnosed and the past few months have been a nightmare. He hasn't been able to go to school this year because of his tics. My heart is completely broken as I watch him struggle with these awful tics and never ending pain caused by them. I just came across these videos from Dr. Stack and the dental appliances used for tics. Sounds to good to be true but I must say the videos are very convincing and I am willing to try it for my son. Do you know of any doctors in south Florida that make these appliances for Tourette's patients? Thank you in advance!
We live in Toronto, Canada. Anybody knows of a doctor here that would do this? My son has been diagnosed since he was 10 and is now 28 and a dad. He's been off medication for a long time but still has facial tics very often which is exhausting. We saw Dr. Stack's video but is skeptical.
My son is in the 8th grade. He did fine in school until he reached Jr. High. Since then it has been a constant battle in every subject. Science and math are the worst. His "tick of choice" is to tightly close his eyes and bob his head back and forth. Usually takes about 2 seconds. However, while trying t read a paper or text book and doing this several times per minute has made school an extremely difficult experience.
I wish you the best of luck with your daughter.
I am wondering how the sticks are supposed to be positioned. Flat, perpendicular, under the eye teeth (which I'm missing), behind...that sort of thing. Hope you get this message. I'm 46 and missing a lot of teeth LOL
I just got my appliance a week ago to treat mild tics (though they’re strong when I’m not medicated). So far, the appliance has had no effect on tics (even though the tongue depressors did months ago pre-meds). Perhaps it needs an adjustment.
I’d be interested in hearing from others about the impact the appliance has on speech. I still cannot pronounce S’s or “sh” properly, so wearing it to work is out of the question. Eating is also quite cumbersome and undesirable. I guess I’ll take it slow and see what happens over time.
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