I am a patient at The Breathe Institute with crippling lifelong insomnia and my insurance is Kaiser Permanente. I pay out of pocket for most things, including treatment at TBI. I know at first glance any out-of-network doctor may not seem like the best choice since you will be paying more out of pocket, but I would like to point out that they are also not constricted by any insurance and often deliver better results. And while Dr. Coppelson may BE out-of-network, your insurance WILL most likely have a contract with the hospital and the anesthesiologist. Most local PPO plans contract with Cedar Sinai and they pay a lot, leaving less out of pocket expenses for you. (I've done a LOT of research on insurance and could write a long blogpost on just that!) Also, regardless of who does the MMA for you, you WILL be in braces for basically the same amount of time. If someone offers to do the MMA WITHOUT braces, run, do not walk away as fast as you can! Evan, I have spent hundreds of thousands of dollars and even gone bankrupt, seeking help before finding Dr. Zaghi and TBI. I, too, am considering the MMA surgery and Dr. Coppelson's fee is actually the going price. My Kaiser maxillofacial surgeon asked me what his fee is and she confirmed this. Frankly, even if it were a little higher, the multidisciplinary approach you get with him, that offers so much more than any doctor or surgeon I have seen, and I've seen a LOT, is more than worth it! I saw your recent video and know you sat in on The Breathe Course. I believe you now have a greater understanding of Dr. Zaghi and Dr. Coppelson, as well as the whole team, and what I heard in that video is a greater appreciation of who they are and what they offer. Bear in mind, most doctors out there get their information by reading the research of OTHER doctors. Dr. Zaghi and his team ARE the people DOING the research that others will read. Pioneers in any field are often rejected, or even reviled in the beginning because they dare to go against the tide and they question the status quo. Dr. Zaghi and his team recognize that people are not algorithms, but are unique beings and one size does not fit all; even though most doctors just continue to do what they were taught in medical school without any thought as to why. I was fortunate enough to sit in on the course, too, and something that really stuck with me was this quote, "Half of what you'll learn in medical school will be shown to be either dead wrong or out of date within five years of your graduation: the trouble is that nobody can tell you which half -- so the most important thing to learn is how to learn on your own." (-Dave Sackett, the father of evidence-based medicine.) Wow! Most doctors out there do not practice with this in mind. They continue to do what they were taught and we continue to suffer as a result. So, Dr. Coppelson has designed his own MSE? Fantastic! He's going to help push medicine along in a new and positive way! (And we'll be able to say we knew him when! LOL!) Like Dr. Zaghi, he practices without ego and with the ability to stand back and see the whole picture. Every one of us watching your videos has suffered, that's why we're here. My UARS is severe and lifelong and I know you and I are not the only ones bouncing from doctor to doctor, desperately seeking help and often feeling despair and isolation. I would trust my life and my family's life with both Dr. Zaghi and Dr. Coppelson. I really feel passionate about this since these are the people saving my life, and Evan, they'll save yours, too.
Thank you for mentioning specific costs, timelines, and payment/insurance details! This is helping me compile a list of people and places to consider doing MMA surgery. (I will consider MSE if someone tells me I actually need it; this hasn’t been on my radar and I don’t have any idea of whether it would be necessary for me.) Part of the challenge for me is that I live in Arkansas so I don’t know whether anyone does these surgeries around here. And if I moved (a real possibility), it would be to the northeast, which would make Los Angeles even further away! But having this kind of information can only help my search.
Your case sounds identical to mine. I’m 25. Former athlete. Developed severe insomnia and fatigue at 22. Failed APAP, BiPap, and mandibular advancement device. I also have the severe dizziness and the tension in my forehead. Anxiety, brain fog, focus, and digestive issues as well. I also wake up countless times during the night, and that’s even despite taking seroquel for sleep. I consulted with Zaghi in May. He recommended MMA. I’m getting MMA surgery in December in Dallas, TX with Dr Sanovich. UARS has destroyed my life, and I can’t wait to get well. Good luck man, keep us updated.
Wow yeah, that sounds extremely identical. I was also an over-achiever before 22. How old are you now? So I'm guessing you're waiting til December bc they had you get braces?
Evan Lavizadeh Yes, I started braces back in August. Fortunately, I won’t need them as long as most people since I have perfectly straight teeth and a good bite from braces as a teen.
Evan Lavizadeh Thanks! Same to you. And I simply couldn’t fall asleep with PAP. Even with sleep meds. I kept waking up choking. Even on the lowest pressures.
The ripple effect of not having proper skeletal growth is amazing. Lack of oxygen, twitching, sympathetic nervous system overload etc. All from lack of proper breast feeding/proper diet. Crazy widespread connections there are. I hope you find resolution. (And I know you do for the most part, because I started watching your latest videos before your older ones here) Lol
I've been suffering with UARS my entire life. Been looking for a solution for the last 5 years. Curious to see how you'll do with all of these interventions.
I currently have an ME/CFS diagnosis. After I pressed for a sleep study, I was shown to have sleep apnea. However most of my symptoms seem related to a nervous system under stress. Looking forward to seeing how your journey progresses. There aren't many cases to research!
Wow no way! Like what symptoms? What was your AHI and RDI from your sleep study? Are you trying CPAP? yea it sucks how little this field has been researched. Keep me updated!
@@evanlavizadeh4032 My AHI is 7 and RDI is 13. So, mild and non-positional sleep apnea. I have debilitating fatigue, nausea, cognitive problems, weakness, I overheat super easily, insomnia, anxiety, depression, and terrible quality of life overall. I had headaches daily until I got on slow-release propranolol and now almost never have them. I tried CPAP on my own (got it off craigslist). I messed with the settings and used it religiously for 6 months with the SLIGHTEST improvement...but not really.
@@jakec5618 Yes, my quality of life is so much better than a year ago. I'm not "cured," but way less miserable. I fixed my circadian clock and starting caring for my mitochondria.
You should try Mute nasal dillators. They go inside your nose and are less visible if you wear them during the day. I think they also widen your nostrils better than breathe right strips. They arent as comfortable but I think they're maybe a bit more useful, if you can tolerate having them inside your nose.
Evan Lavizadeh Also this might not be helpful for you, but I think it’s worked for me, I started wearing a soft cervical collar. It keeps my neck straight and prevents me from tucking my chin while I sleep which kind of squishes the airway. It also kind of locks your chin in place which has a slight mandibular advancement effect. It’s hard to tell how much it’s doing but I have experimented sleeping with and without it and I think I have better nights with it. I think you’ll find you get better airflow when your chin is up and your neck is straight, so locking that in place should theoretically be better than letting your chin/neck drop down.
@@evanlavizadeh4032 The only way to get rid of it is by preventing RERAs. It's called Orthostatic Hypotension btw, or POTS (Postural Orthostatic Tachycardia Syndrome)
I have all those symptoms. Really relate to the head pain that’s constant and varies in location. I get it too right where head attaches to neck. I have to sleep elevated or else the head pain gets too unbearable over the night.
I have a cheap one from overseas. It did say I had some drops, but I'm not sure how reliable it is, because I noticed it had a big drop during a time where I was awake.
@@evanlavizadeh4032 I got the Viatom o2 monitor and the results were interesting for me. I have similar symptoms as you but not exactly the same. I always feel tired and feel like I need to sleep and just close my eyes but then it takes me hours to get to sleep. I wake up feeling less rested than I went to bed. I did check my o2 and it was dropping below 90 a few times during the night. On APAP the drops stopped happening but I felt much worse and my AHI was still 3-7. Three months ago I went on ASV and again no o2 drops at all and a 0 AHI but I feel probably slightly more tired than I do without xpap but a lot less headaches and every now and then I'll have a day where I'll feel "normal" ( maybe 2 or 3 of these days ). I also seem to have less skin problems. My anxiety is still really bad though. I have a severe overbite and I'm a skinny guy so I'm wondering if jaw surgery is in my future as well - obviously it's something I'd like to avoid. I use a Dreem device at night and that shows interesting results. I have a ton of small wakeups that I don't remember and generally a very low deep sleep amount ( 10mins - 50mins) and then I have like 3-4 hours of REM sleep. Oh I was also curious about low blood pressure. I have low blood pressure and will get these sudden dizzy spells where it feels like the ground is moving. I've heard UARS and low blood pressure go together.
@@solomon74 I have the same monitor. Seems unreliable but still useful? I also do get tons of dizzy spells. Have you tried MAD? Just to verify how much the overbite is contributing?
Evan Lavizadeh Oh that’s too bad, mine seems pretty reliable and repeatable. Ie. You can clearly see on the graphs the nights I’m using xpap vs not using it. I’ve had two different MAD devices made and no luck with either. A couple months back I tried both the MAD and ASV without any benefit as well. My overbite is so bad tho that even on the longest setting it’s painful to wear and hard to keep my mouth closed with it.
I am a patient at The Breathe Institute with crippling lifelong insomnia and my insurance is Kaiser Permanente. I pay out of pocket for most things, including treatment at TBI. I know at first glance any out-of-network doctor may not seem like the best choice since you will be paying more out of pocket, but I would like to point out that they are also not constricted by any insurance and often deliver better results. And while Dr. Coppelson may BE out-of-network, your insurance WILL most likely have a contract with the hospital and the anesthesiologist. Most local PPO plans contract with Cedar Sinai and they pay a lot, leaving less out of pocket expenses for you. (I've done a LOT of research on insurance and could write a long blogpost on just that!) Also, regardless of who does the MMA for you, you WILL be in braces for basically the same amount of time. If someone offers to do the MMA WITHOUT braces, run, do not walk away as fast as you can! Evan, I have spent hundreds of thousands of dollars and even gone bankrupt, seeking help before finding Dr. Zaghi and TBI. I, too, am considering the MMA surgery and Dr. Coppelson's fee is actually the going price. My Kaiser maxillofacial surgeon asked me what his fee is and she confirmed this. Frankly, even if it were a little higher, the multidisciplinary approach you get with him, that offers so much more than any doctor or surgeon I have seen, and I've seen a LOT, is more than worth it! I saw your recent video and know you sat in on The Breathe Course. I believe you now have a greater understanding of Dr. Zaghi and Dr. Coppelson, as well as the whole team, and what I heard in that video is a greater appreciation of who they are and what they offer. Bear in mind, most doctors out there get their information by reading the research of OTHER doctors. Dr. Zaghi and his team ARE the people DOING the research that others will read. Pioneers in any field are often rejected, or even reviled in the beginning because they dare to go against the tide and they question the status quo. Dr. Zaghi and his team recognize that people are not algorithms, but are unique beings and one size does not fit all; even though most doctors just continue to do what they were taught in medical school without any thought as to why. I was fortunate enough to sit in on the course, too, and something that really stuck with me was this quote, "Half of what you'll learn in medical school will be shown to be either dead wrong or out of date within five years of your graduation: the trouble is that nobody can tell you which half -- so the most important thing to learn is how to learn on your own." (-Dave Sackett, the father of evidence-based medicine.) Wow! Most doctors out there do not practice with this in mind. They continue to do what they were taught and we continue to suffer as a result. So, Dr. Coppelson has designed his own MSE? Fantastic! He's going to help push medicine along in a new and positive way! (And we'll be able to say we knew him when! LOL!) Like Dr. Zaghi, he practices without ego and with the ability to stand back and see the whole picture. Every one of us watching your videos has suffered, that's why we're here. My UARS is severe and lifelong and I know you and I are not the only ones bouncing from doctor to doctor, desperately seeking help and often feeling despair and isolation. I would trust my life and my family's life with both Dr. Zaghi and Dr. Coppelson. I really feel passionate about this since these are the people saving my life, and Evan, they'll save yours, too.
Sorry to hear you’ve gone through all that. What were/are your AHI and RDI? And how are you doing now?
Thank you for mentioning specific costs, timelines, and payment/insurance details! This is helping me compile a list of people and places to consider doing MMA surgery. (I will consider MSE if someone tells me I actually need it; this hasn’t been on my radar and I don’t have any idea of whether it would be necessary for me.)
Part of the challenge for me is that I live in Arkansas so I don’t know whether anyone does these surgeries around here. And if I moved (a real possibility), it would be to the northeast, which would make Los Angeles even further away! But having this kind of information can only help my search.
Your case sounds identical to mine. I’m 25. Former athlete. Developed severe insomnia and fatigue at 22. Failed APAP, BiPap, and mandibular advancement device. I also have the severe dizziness and the tension in my forehead. Anxiety, brain fog, focus, and digestive issues as well. I also wake up countless times during the night, and that’s even despite taking seroquel for sleep. I consulted with Zaghi in May. He recommended MMA. I’m getting MMA surgery in December in Dallas, TX with Dr Sanovich. UARS has destroyed my life, and I can’t wait to get well. Good luck man, keep us updated.
Wow yeah, that sounds extremely identical. I was also an over-achiever before 22. How old are you now? So I'm guessing you're waiting til December bc they had you get braces?
Evan Lavizadeh Yes, I started braces back in August. Fortunately, I won’t need them as long as most people since I have perfectly straight teeth and a good bite from braces as a teen.
@@mattdarwin6497 good luck!! Why did pap fail?
Evan Lavizadeh Thanks! Same to you. And I simply couldn’t fall asleep with PAP. Even with sleep meds. I kept waking up choking. Even on the lowest pressures.
@@mattdarwin6497 dang I see....
Really informative! Looking forward to seeing where your journey takes you! Good luck!
The ripple effect of not having proper skeletal growth is amazing. Lack of oxygen, twitching, sympathetic nervous system overload etc. All from lack of proper breast feeding/proper diet. Crazy widespread connections there are. I hope you find resolution. (And I know you do for the most part, because I started watching your latest videos before your older ones here) Lol
I've been suffering with UARS my entire life. Been looking for a solution for the last 5 years. Curious to see how you'll do with all of these interventions.
What solutions have you tried?
I currently have an ME/CFS diagnosis. After I pressed for a sleep study, I was shown to have sleep apnea. However most of my symptoms seem related to a nervous system under stress. Looking forward to seeing how your journey progresses. There aren't many cases to research!
Wow no way! Like what symptoms? What was your AHI and RDI from your sleep study? Are you trying CPAP? yea it sucks how little this field has been researched. Keep me updated!
@@evanlavizadeh4032 My AHI is 7 and RDI is 13. So, mild and non-positional sleep apnea. I have debilitating fatigue, nausea, cognitive problems, weakness, I overheat super easily, insomnia, anxiety, depression, and terrible quality of life overall. I had headaches daily until I got on slow-release propranolol and now almost never have them. I tried CPAP on my own (got it off craigslist). I messed with the settings and used it religiously for 6 months with the SLIGHTEST improvement...but not really.
@@chamoyraesegura8454 have u found anything that helped ?
@@jakec5618 Yes, my quality of life is so much better than a year ago. I'm not "cured," but way less miserable. I fixed my circadian clock and starting caring for my mitochondria.
@@chamoyraesegura8454 hey thats good news. getting better. yes, its crzy how much things stress affects.
4:00 You're explaining your symptoms exactly like I had them
Wow. That's crazy. Where are you at with your treatment?
@@evanlavizadeh4032 BiPAP worked wonders for me from day one. I've posted my story in response to you on r/UARS.
@@cebruthius oh yeah I remember! You're the person who just started with BiPAP and hadn't used CPAP prior!
@@evanlavizadeh4032 I tried it in CPAP mode first but that didn't put me at ease (understatement of the year)
how long did it took for you to feel like completely recovered and how bad was your symptoms prior?
You probably mean the sympathetic nervous system, as that is the one associated with alertness, wakefulness and anxiety.
Yeah that was my mistake, thanks!
You should try Mute nasal dillators. They go inside your nose and are less visible if you wear them during the day. I think they also widen your nostrils better than breathe right strips. They arent as comfortable but I think they're maybe a bit more useful, if you can tolerate having them inside your nose.
Hmm ok I'll try them! Thanks!
Evan Lavizadeh Also this might not be helpful for you, but I think it’s worked for me, I started wearing a soft cervical collar. It keeps my neck straight and prevents me from tucking my chin while I sleep which kind of squishes the airway. It also kind of locks your chin in place which has a slight mandibular advancement effect. It’s hard to tell how much it’s doing but I have experimented sleeping with and without it and I think I have better nights with it. I think you’ll find you get better airflow when your chin is up and your neck is straight, so locking that in place should theoretically be better than letting your chin/neck drop down.
5:45 The dizziness is due to low blood pressure caused by the confused state of the autonomic nervous system
No way?? Any ways to battle that in the meantime?
@@evanlavizadeh4032 The only way to get rid of it is by preventing RERAs. It's called Orthostatic Hypotension btw, or POTS (Postural Orthostatic Tachycardia Syndrome)
@@cebruthius thanks for bringing this to my attention! I'll be looking into it!
I have all those symptoms. Really relate to the head pain that’s constant and varies in location. I get it too right where head attaches to neck. I have to sleep elevated or else the head pain gets too unbearable over the night.
I feel you. It sucks. Those are called your occipital nerves. Mine are so damn stressed
@@evanlavizadeh4032 ok I’ll have to do some research on occipital nerve.
Do you experience extreme tiredness or sleepiness during the day?
Do you wear an o2 meter when you sleep ? Be curious to know if you’re having drops
I have a cheap one from overseas. It did say I had some drops, but I'm not sure how reliable it is, because I noticed it had a big drop during a time where I was awake.
@@evanlavizadeh4032 I got the Viatom o2 monitor and the results were interesting for me. I have similar symptoms as you but not exactly the same. I always feel tired and feel like I need to sleep and just close my eyes but then it takes me hours to get to sleep. I wake up feeling less rested than I went to bed. I did check my o2 and it was dropping below 90 a few times during the night. On APAP the drops stopped happening but I felt much worse and my AHI was still 3-7. Three months ago I went on ASV and again no o2 drops at all and a 0 AHI but I feel probably slightly more tired than I do without xpap but a lot less headaches and every now and then I'll have a day where I'll feel "normal" ( maybe 2 or 3 of these days ). I also seem to have less skin problems. My anxiety is still really bad though. I have a severe overbite and I'm a skinny guy so I'm wondering if jaw surgery is in my future as well - obviously it's something I'd like to avoid.
I use a Dreem device at night and that shows interesting results. I have a ton of small wakeups that I don't remember and generally a very low deep sleep amount ( 10mins - 50mins) and then I have like 3-4 hours of REM sleep.
Oh I was also curious about low blood pressure. I have low blood pressure and will get these sudden dizzy spells where it feels like the ground is moving. I've heard UARS and low blood pressure go together.
@@solomon74 I have the same monitor. Seems unreliable but still useful? I also do get tons of dizzy spells. Have you tried MAD? Just to verify how much the overbite is contributing?
Evan Lavizadeh Oh that’s too bad, mine seems pretty reliable and repeatable. Ie. You can clearly see on the graphs the nights I’m using xpap vs not using it.
I’ve had two different MAD devices made and no luck with either. A couple months back I tried both the MAD and ASV without any benefit as well. My overbite is so bad tho that even on the longest setting it’s painful to wear and hard to keep my mouth closed with it.
@@solomon74 I used some cheap MAD from Amazon and yeah my mouth is so small that it hurt after 10 minutes of use.
Whats your age btw? I thought I remember you mentioning you were 27 but I'm not sure
Yea, now I'm 28.
@@evanlavizadeh4032 Also, do you know what your movements were for mma? How many mm forward for each jaw and how much cww rotation?
@@Will_4560 21mm pogonion. I think about 9 deg rotation