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My story- 20 years of TMJD and MSE at 35  

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NoctilucentNikki
Active Member

Hello internet-

I am SO VERY GRATEFUL for the people who share their experiences, may the old Gods and the new bless them. So, I will also share. Pictures yes, vlog no. Sorry. PS I am a Detroiter in Michigan, USA. 

The more I understand the less I will be afraid of something, so I have been reading about a MSE or MARPE for the last week. I actually just learned they are a thing last week at a free consultation relatively close to home, and after what feels like reading and watching the entire internet, it really does seem like the best choice for me. So here I go.

My backstory: 

Traumatic birth. I got halfway out and a doctor shoved me back in and my mom had a C-Section. I was "fine" but that messed up my neck big time, suffered fainting spells my whole life, terrible headaches, migraines, insomnia, anxiety and have just been a grouchy miserable person my whole life. (Was bottle fed also, just learned recently that doesn't help my case. Didn't thumb suck but always had the corner of my blankie in my mouth so that sounds like almost the same thing.) Anyways, looking back, this led to the shape of my palate, bite and everything. By age 15 I was wearing special TMD bite guards unless eating. (No money for ortho, we were not well off.) I remember I was on a school field trip to Washing DC with my mom as a chaperone and the entire weekend I had lost hearing in 1 ear. She thought I had a bad infection and kept pouring peroxide in it every chance she could. But, my TMJ was just that inflamed. I had sunglasses and a broody face on in every photo, I looked so cool.

Age 19: 

One day I was driving 0 miles per hour and was rear ended by someone doing 70 miles per hour. I'm not sure they lived, so I consider myself lucky and do the best I can. Everything has been worse since. Not sure how I made it through college. Oh yeah, Vicodin, Xanax and coffee.

Last 20 years: (I'm 35 now)

Yes, I've tried that. Heaps of medications (for anxiety, depression, insomnia, nerve pain, opiates, muscle relaxers, a nice cocktail of several...) nothing works or they just make things worse. JK Norco definitely works, most of the time, but no one wants to give me any because addiction and also no I do not want to ever become dependent on anything. Injections- numbing stuff was useless, prolo-therapy helped a lot actually. It's a basic mix of saline and dextrose and is injected in between bone and muscle to help your body grow more connective tissue. It’s safe and not that bad. I had 3 sessions, about a dozen shots each time, 3 weeks apart, all down my neck, top of my shoulder and around my shoulder blade. Helps a lot with spasms. Chiropractic, regular and NUCCA. Massage, feels good, last about 1 freaking day. Cranio-sacral, sure it helps, about as much as a massage. Supplements, turmeric, whole food organic fermented non GMO multis, magnesium, St. Johns Wort, etc. Physical therapy never helped. Although last year I seen a different "Headache Specialist" PT guy who did teach me chin tucks and proper posture which did help. Everyone else just wants me to do neck exercises to strengthen and tone neck muscles. Sure, but not going to fix my bite.

Most days, I eat some kale, slather myself in essential oil, toss some crystals in my bra, I’m good to go about my miserable day. People smell me coming before they see me coming. Tiger Balm is my fave FYI.

About a year ago I did discover NeuroMuscular Dentistry. I went to 5 consultations. Most of these people were trained at the Las Vegas Institute (LVI)  and push a 24/7 fixed orthotic for a few months as phase 1. Then, full mouth reconstruction as phase 2, with braces. Umm, no thank you. Also that is a bajllion dollars. One of these guys took classes at LVI and didn’t buy into it because he had been working with the same holistic concept for decades and did not believe in a fixed orthotic or that a full mouth reconstruction was necessary. So, I picked him. Also his office worked magic to accept insurance. I committed to phase 1 which helped stabilize me tremendously. I was scanned and X rayed and hooked up to TENS machines for an hour at a time, my physiological ideal bite was determined, that’s how my orthotic was created. It was adjusted multiple times over days, weeks and months until comfortable, and I am good! Mostly! Better than I have in a long time! Yes! Now, to stay this way…

I planned on going through phase 2 with him, with just ortho (Schwartz expander and braces), to make sure my bite was set to this new awesome position. He worked together in house with an orthodontist but his guy is no longer accepting new people into ortho so he can eventually retire. Boo.

This last month:

I went to 3 more consultations with orthodontists. I am looking for either someone to work with my guy, or someone to work with alone. Either way, my current guy is all for me doing what is best whether it’s including him or not. Cool.

Consult 1 was a know it all jerk who pushed surgery, who also breathed heavily into my mouth. Eww.  Consult 2 thinks Damon braces fix everything and I’m fine. Consult 3 was the first person to ever ask about a deviated septum, sleep apnea, sinus issues, and generally all around be concerned for my well being. Loved her! She is the one who mentioned a MSE and Dr. Won Moon. She referred me to a periodontist she works super closely with 2 miles from her office. The perio would evaluate me and do the CBCT scans to see if I am even eligible because I look that stinkin narrow. The MSE would be placed by the perio, who does several of these a week! She has hundreds of reviews, that are all 5 stars. The ortho also has a 4.9 rating overall. Ka-Ching. This is every day for them, hello new world of information.

I have hope, terrified hope. Yes I have many tattoos, yes I have had shots and cavities filled and broke a bone in my hand during that car accident. But no, I have had screws in my freakin head. No surgery. Nothing invasive. The more I read about a MSE the better it sounds. However, no, I do not want screws in my head! Also, by me cranking the MSE, I would be the one spitting open my freaking skull. I’m going to need to warm up to this. I feel pretty bad ass as is,  but if I go through with this I am going to feel like Xena, a Warrior Princess of Pain >_<

So yes, I have lived in bite guards for 20 years. I do not want to go on another 50 years like I have the last 20. I want to fix this permanently, the best I can. I am just now about to kind of afford this treatment. So, afraid or not, I don't have much of an option. 

Nikki

This topic was modified 6 months ago by NoctilucentNikki
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Posted : 01/04/2019 7:33 pm
Apollo liked
NoctilucentNikki
Active Member

OK so, here are some photos so you can see what I am working with. High palate, V shaped bite, teeth are collapsing in. My actual TMJ's are OK but that neck is very straight and still gives me a lot of trouble. Visible over bite, and lots of sinus issues. Very narrow airway. This may be why I yawn constantly whenever I try to get active and therefore hate exercise? My lungs give out way before my legs ever do so can I blame my fluffiness on this? Eghh?  

Also, look closely and you'll see I don't actually have a bite! None of my back teeth touch at all 🙁

I called and made the appointment to get the ($300) evaluation with the periodontist, which will be April 25th at lunch time. The receptionist seems adorable and booked me a spot where I will have time to ask 500 questions. Love her already. 

They will do the CBCT and give me all the details and let me know how routine or special I will be. If I am not a chicken poo, I will book the procedure to have it placed! Eeek. 

Also, as a quick estimate, the ortho quoted me around $8200. and she estimated the perio will be $1300. So total is $9,500 out of pocket. For me to fix all of my lifetime chronic issues... all while cracking open my own skull. 

This post was modified 6 months ago by NoctilucentNikki
ReplyQuote
Posted : 01/04/2019 8:01 pm
NoctilucentNikki
Active Member

And some fave resources so far:

https://docs.wixstatic.com/ugd/87f545_e7c83401dd5846faa06689ce5794fba0.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5398849/

and this woman who I hope to be as brave as:

https://youtu.be/OmdpelNHGys

ReplyQuote
Posted : 01/04/2019 8:06 pm
mr.mewing
Trusted Member

your jaw is set back al lot which can cause TMJ i think this comes form not mewing and bad posture (i think your posture isn't that good in my opinion) but anyway your airway is really narrow , because of maybe mouthbreathing , bad posture  this airways can  cause sleep issues like sleep apnea so getting into treatment isn't that bad of an idea.

but i don't have any experience with the skeletal expander the only thing i know about those expanders are great to open up the airway because the molars get wider and you will get a big gap betweeen the front teeth which sucks but it is worth it in my opinion

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Posted : 02/04/2019 2:04 am
Mewb
 Mewb
Active Member

Yes you should honestly go with MSE. Most people here would give up anything for the chance to get it alongside a facemask, don't worry too much about the drilling in the maxilla as its still not as invasive as a lefort.

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Posted : 03/04/2019 9:47 am
NoctilucentNikki
Active Member

Update! I had a CBCT scan and a consult with a periodontist today 😀

Yes, the MSE is my best option. I would be working with an Orthodontist, who would place the MSE but 2 miles away her Periodontist friend would install the screws. I would get the smallest 8mm MSE with the 11mm screws. However, a few concerns: not only do I have a deviated septum, my palate is deviated. As in, the roof of my mouth slopes to one side a bit. The expander wouldn’t be level across from side to side. However, my scans and x-rays and everything from both the Ortho and Perio go to Dr. Moon and his friends in California, they custom make the MSE and ship it back to them, and I get a one of kind treatment. Sounds cool.

Also, my lower jaw might, maybe, we’ll see when we get there, could need bone grafting to add width to it, so my lower teeth can move outwards to match the uppers later on. That sounded painful, and weird. She said she pulls back the gum and adds sandy like bits of bone all around. I asked “WHOS BONE!?” And apparently it’s from a bone bank, that they get it from cadavers. Eww? Anyways, that might not even need to happen.

So I would have the MSE installed and after a few weeks the anchors around the back teeth come off but the expander and screws stay in up to 8 months total (likely 6). These only make sure the MSE is placed exactly where Dr. Moon and his team want it. No pressure is exerted on the teeth. She will absolutely make sure the teeth do not get pushed out or that I get over-expanded or the screws start to tip, working with the Ortho closely. In fact the 3 of us would all text and call and check in daily the first few weeks! Hello new BFF’s.

Also, the success rate of this process is not so much related to age or gender, it’s on how fused your palatal suture is. There’s a scale from A to E apparently. I am at a B so it’s not fully 100% closed up forever. A and B level people haven’t had a problem while D and E are not likely to be successful with an MSE.

The Perio said she can install tads in her sleep and installing an MSE is the easiest thing she does. However, she is the only one in Michigan that installs MSE’s! How bizarre I picked 3 Orthos to consult in my area and I landed on one that works with this Perio! However, they’ve only been doing it for a couple of years and have had about 4 patients do it. 1 was not successful, as they did him 2 years ago before they knew about the A-E scale. He is a 50ish year old man who is a large, over 6 foot and 250lb+ man who is very… well, solid, with a more fused suture. He is going to follow through with SARPE and then continue though. Her other few patients still have the MSE in (ages late twenties to late 40’s.) She showed me pics of their mouths as they agreed to share. So, she will do another CBCT scan after the expansion and maybe after the MSE comes out to show the healed and expanded area. She was thorough with the pictures.

The area does fill in with bone over time. It becomes just as hard as the surrounding palate. There are no main arteries or nerves to hit, so there’s really no chance of losing feeling or bleeding. (My anxiety had to ask). For the installation I can have any type of numbing shots, gas, sedation, etc. however I would just take the shots. I don’t like feeling high or being put under. Her previous patients said it’s not bad, but the last few cranks of the screws feel uncomfortable, even itchy. Before the split occurs they have described as pressure and a slight burning feeling more than actual pain. No one seems to need more than Tylenol though.

And, for me, she thinks I could see an ENT after my treatment to really fix the deviation if needed. I don’t want to think about it yet, but said her patients have breathed better immediately with the MSE. Also, she recommended later in the process seeing her… I can’t think of the word, but person who can teach me tongue and mouth exercises to better talk or know what to do with my tongue, posture, etc. They do 1 on 1 visits but I could opt to do them over Face Time even.

So for the CBCT, I have it on a disk. PSA: We did not talk measurements or look though it there. Here are some snips I made myself. I am messing around with it, it doesn’t come with a training module. These are my best guesses. If I measured at the wrong place, let me know and I will try again. She didn’t give me any specific numbers. However, they look cool.

Conclusion- I’m still nervous. Only because it’s so new, they are learning as they go. Mild pain and discomfort. They seem to be bad [Rude Language will not be tolerated] at what they do and make a great team though. They seem truly sincere and care about my health and a straight pretty smile was not their main goal with me (although I will get a nice pretty smile too). They took as much time as I needed with my questions and I didn’t feel rushed. They even travel and give conferences together to get the word out because they know regular old expanders do not do what MARPE or SARPE do. I feel lucky they are relatively close to me. Grand total, for both the MSE with the Perio and Braces with the Ortho is just a hair under $10k.

ReplyQuote
Posted : 25/04/2019 7:23 pm
NoctilucentNikki
Active Member

I can't seem to upload any photos or even edit my previous post. I will try again tomorrow 🙁

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Posted : 25/04/2019 9:20 pm
NoctilucentNikki
Active Member

I cannot seem to upload photos at all, so here is an Imgur link:

Nikkis CBCT scan

Again, PSA: We did not talk measurements or look though it there. Here are some snips I made myself. I am messing around with it, it doesn’t come with a training module. These are my best guesses. If I measured at the wrong place, let me know and I will try again. She didn’t give me any specific numbers. However, they look cool.

ReplyQuote
Posted : 26/04/2019 6:45 pm
NoctilucentNikki
Active Member

I submitted, over 2 emails, additional questions that I forgot to ask to the orthodontist. Here are her replies.

First email:

1. Why the implanted expander and not a similar one that is not implanted? What is the benefit for my case? Any risks I should be aware of?
She was the first to recommend this to me; my other consultations recommended either no expander, a Schwartz expander or surgery. I was unaware of an implanted type and would just like more information as it seems a bit intense.

Docs response: The upper jaw is done growing at age 7, thus a conventional expander would do nothing more than tip the teeth in the current bone. The goal of an implant based expander is to actually expand the maxilla (upper jaw) and not just tip the teeth into a wider portion of the jaw. The benefit is your upper jaw is very narrow, try to regain ideal size, as well as improve the base of the nose thus helping you breath better through your nose. The risks are varied, I do not place the skeletal expander, my colleague the Periodontist does therefor the consult with her will answer more questions on the risks. The main risk I see presenting itself is the jaw may not separate and expand, the implants may not work. We do not know if this risk is going to present itself ahead of time, there are patients in the expander who have not expanded.

2. Would I get an expander on the lower jaw as well?

Docs response: We would not expand the lower jaw, in a true sense, as it is just one piece (the upper jaw is two pieces and can be pushed apart to be made wider). When an orthodontist is saying they would expand the lower jaw, we mean upright the teeth and make the teeth wider as that is the only option with the lower jaw.

3. What type of retainer can I expect to get once treatment is over? Permanent? Or perhaps one that looks like an Invisalign tray? And, can this be modified to also act as my night time TMD bite guard?

Docs response: Retention varies based on how each patient responds to treatment, in general for a case like yours I would anticipate a clear retainer (like Invisalign) that we modify to act as a bite guard as well, by adding acrylic.

4. Why types of scans do we do along the way?
I ask because working with my current NeuroMuscular “specialist” I was scanned, hooked up to a TENS unit for an hour, then re-scanned to find ‘where my jaw wanted to go’ before we made my current orthotic. Do you do similar scans, or would I see him on occasion to make sure my bite is progressing into the ‘correct’ location? Or neither

Docs response: The imaging would be a 3D CBCT to evaluate your anatomy for the MSE (maxillary skeletal expander) which would be taken pre and post op. We would also take radiographs in my office as needed to assess treatment and aid in treatment decisions. I do not use a TENS unit in office, I would be happy to try and work with your current provider to ensure the jaw position is ideal - which may require scans in their office. If we have a difference of opinion it would be up to you to determine how to proceed.

Second email, after I had the CBCT and consult with her Periodontist:

1. The periodontist mentioned that my lower jaw is pretty narrow and doesn't expand like the upper. She mentioned bone grafting, as a possibility way down the road, maybe-maybe not, if you needed help matching my lower teeth to my upper, once I'm fully expanded and in braces. That doesn't sound pleasant at all and I would like to avoid it. By looking at my scans, can you get me to 100% of my potential without that? 75%? I am willing to compromise if it's a high percent sans grafting. My goal is pain relief and breathing over aesthetics.

Docs response: This is a tough one because you are very narrow on the upper, and as an adult I have no way of knowing how your bone and soft tissue will respond. All I can say is we can 100% try to upright the lower teeth without any additional intervention.

2. Since my palate is expanding, does that expand the entire width of my upper jaw, TMJ to TMJ? Basically, will this process have a chance of making pain in these joints worse?

Docs response: There is always a chance, however I have yet to see that happen - there is a stronger correlation with the narrow jaw and TMJ symptoms. The expander would expand the entire upper jaw, but the TMJ joint is on the lower jaw

3. We didn't talk actual measurements from my CBCT. How bad is my airway, really? Everything I read online mentions specific measurements. Dr. Anderson mentioned I might need to see an ENT when I am all done with orthodontics to correct the deviated septum.

Docs response: There are no set guidelines for airway size and dimension, partially because the airway moves/flexes etc., can vary based on tongue posture in the image and head posture. I do not take airway measurements from the CBCT as I do not use the machine, but you could ask the Periodontist to have it read by a radiologist (there is a fee) for exact measurements. I recommend an airway case based off of symptoms and patients quality of life - I see it all the time where it "looks" like a horrible airway but they have no symptoms, and the reverse.

4. Once I start this process, my current bite guard/orthotic becomes obsolete. Would I go without one until I am brace-free, or just use a cheap DIY one from the store?

Docs response: Yes - we will try to make something if we can but because the teeth will be constantly moving something over the counter may need to be used.

-------

I understand any type of doctor can never give you a 100% chance of anything, but this all seems pretty good. Right? I should move forward with the MSE?? I do have to say, the ortho and perio were beyond attentive to my 4000 questions, did not make me feel rushed at all whatsoever and seem like legit really good people who want to help me feel better and not just look better. I'm scared but so far have no reason to believe this will hurt more than what I have been dealing with the last 20 years. And the MSE will be in for 6 months- It was $300 for the CBCT which is paid for already, $1000 for the perio and $500 for the Ortho. I can afford this now, or over the 6 months.

Thoughts?

ReplyQuote
Posted : 30/04/2019 7:18 pm
darkindigo
Reputable Member

You’re a smart, articulate, gutsy survivor! It seems to make sense. I would look into Dr. Sue Lee’s treatment for widening the mandible.

I would fully make clear the expectation that you are done with splints and tired of them and never want to wear them again. MSE should be able to deliver that. You’re getting braces with MSE, right? Make them bring the back teeth down. These guys sound smart. They sound caring. They sound connected. Sometimes paying a little more is worth it. MSE can close posterior open bites. Braces can, too. If you want more info on this, happy to send it.

Airway - your airway behind jaws looks awesome from the cephalometric. Any airway issues would be from the nasal area. This is where depression/anxiety are coming from as the turbinates take turns breathing every so many hours.

History - This all started from your tongue. Your tongue appears tied or something. Because you couldn’t actually use your tongue well, your natural biological survival instinct kicked in to chew. That’s why you had the blankie... to chew. It just was asymmetrical. Your tongue has been missed so many times. It clearly didn’t keep your teeth out. Lips and tongue balance dictate teeth placement. Your MSE person has picked up on this, so that’s good. MSE or braces or Schwartz or any bone reshaping without resolving root cause will relapse to varying extents in time. A tongue that is highly restricted from coming forward cannot keep teeth from concaving in on themselves. It won’t support a healthy arch form. As your mandible grew, your lower teeth were trapped behind your upper ones. This put strain on TMJ. A splint was not the answer, though hindsight is always 20/20. A splint just caused a posterior open bite. This may have relieved some pressure/pain for a couple of complicated to explain reasons. However, it also creates a dependency on the splints. Without them, the muscles cannot relax so well. Truthfully, during treatment I would not stress so much about this TENS testing. Everything is in flux. Muscles take time to adapt. I honestly think it can just create more problems. (For example.. while someone has rubber bands with braces to close a posterior open bite... there is going to be discomfort of TMJ inevitably. Once closed, that should lessen. However, during treatment if you go measure all the discomfort, things will be seeming to be going in the wrong direction. They’ll say help! Get a splint! Sheesh. Basing it on CBCT is a more reliable way...but someone has to know how to read condyles. AFTER the bone changes then the muscles will be able to eventually respond or weaken/strengthen and adjust. That’s just my opinion & have not looked a lot into TMJ treatments...but it just kind of logically makes sense.)

Tongue - With MSE making everything loose, I may be concerned about the lips winning the war against the tongue for teeth placement yet again. I’m not sure the optimal timing during treatment to release a tongue, but I would say after fixing the arc of your front teeth. You could do that up top with Schwartz. Tipping out would be good for those teeth. LOL They have fan-shaped ones or ones where you can control both forward and back teeth. Those are my favorite. They have 2 screws in sequence.

As for the tongue, there are groups on Facebook that stretch tongue ties. I would probably decide up-front what to do. Releasing a tongue that has been getting stronger through exercise can make that sucker go..... like long! I would bet a LOT of money that you have a tongue tie so severe it needs some kind of cutting or laser or revision anyway. As there are doctors in wait with laser guns ready, I have to turn to the only reputable source I know on the matter...Dr. Derek Mahony. He has a YouTube video on how to check adults for tongue ties.

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Posted : 02/05/2019 12:37 pm
Rhoste liked
darkindigo
Reputable Member

For the cheapest route, I would get upper Schwartz and tongue release and turbinate reduction or possibly surgery depending on how bad it is. I would also double use of Schwartz to even out palate asymmetries. Keep wearing splints. That is the cheapest.

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Posted : 02/05/2019 12:52 pm
darkindigo
Reputable Member

Keep in mind...referencing some yippie on the internet and their uneducated opinion may not bode well. If you like what they present, go for it! They see in your mouth. A good rapport is absolutely needed and it sounds like you can trust them...even if you have to improvise part-way and pull in a hockey mask.

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Posted : 02/05/2019 1:00 pm
NoctilucentNikki
Active Member

@darkindigo I actually do not have a tongue tie!

New update today: A random reply from the Ortho:

"I did speak with the perio and she thought it was a greater than 50% chance you may need SFOT on the lower arch to fully upright the teeth. This could be something we see as treatment progresses, get the teeth in to the best position possible and then make the decision if you want to further move them and need the soft tissue grafting."

Ughhhhhhhhhhhhhhhh yuck 🙁

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Posted : 02/05/2019 9:15 pm
Melius
Active Member

@NoctilucentNikki Good luck on everything! Would you mind posting or PM’ing me the ortho and periortho working on you?

I’m a Class III looking to get MSE done with Face Mask for protraction.

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Posted : 03/05/2019 10:37 am
darkindigo
Reputable Member

Can you reach your tongue to the tissue behind the top front teeth when the mouth is all the way open?

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Posted : 03/05/2019 11:54 am
NoctilucentNikki
Active Member

@darkindigo most definitely can!

@Melius This site is so awesome for info and yet so bad in regards to how it functions. I cannot seem to message you. Try messaging me?

ReplyQuote
Posted : 03/05/2019 5:57 pm
Melius
Active Member

@NoctilucentNikki I can’t seem to either, I can send PMs in conversations I had already started but I can’t start a new one (specifically I can’t add a new recipient) Might be because I’m on my phone so when I’m home on my computer I’ll try to PM you again; I’ll post here once I’ve messaged you to see if you receive it.

ReplyQuote
Posted : 03/05/2019 6:31 pm
darkindigo
Reputable Member

I let @TGW know. 🙂 @noctilucentnikki and @melius The site is awesome, but recently has had some bugs introduced. Anyway, I know the Admins are committed and responsive!

ReplyQuote
Posted : 04/05/2019 12:23 am
NoctilucentNikki
Active Member

Thanks @darkindigo :3

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Posted : 04/05/2019 10:26 am
Melius
Active Member

Sorry @NoctilucentNikki I've been really busy and forgot to PM you; I believe I was able to send it!

ReplyQuote
Posted : 05/05/2019 5:38 pm
NoctilucentNikki
Active Member

So, I made the call today. I am getting the MSE.

Next Wednesday, 6-12-2019 I have 1 more scan of my mouth, all my info gets sent off  to UCLA for my MSE to be custom fit to my mouth. It comes back 3 weeks later. By the time it arrives, I will have had spacers in for a week and will have the ortho glue it to the back teeth. Then I take the screws down the street to the Perio and she installs the tads. And hopefully a week or 2 after that I will post very sexy pics of my diastema! 

PS I am terrified. This will be the most invasion procedure I've even had. >_<

How was everyone elses experience with the installation? Please share!

ReplyQuote
Posted : 06/06/2019 6:43 pm
NoctilucentNikki
Active Member

Update from today:

Today I went for a quick scan at the ortho, basically a 'camera on the end of a stick' was put in my mouth and moved around to capture a 3D image of my entire upper mouth and palate. This was needed so it could be sent with my CBCT to a lab/UCLA to make my custom fit MSE.

This was all fine, however, I am apparently so narrow and my palate is so high up that it took 2 techs trying to capture it all and a 3rd person pacing around looking confused! In the end they could NOT get the whole scan and had to call the lab to confirm that they had enough to model my MSE! I was feeling pretty special, that's for sure. This reminded me of the last time I had to have molds made with the goop-in-the-tray method for my last neuro-muscular bite splint: a tech tried approximately 26 trays before she found a child's mold that almost fit, but had to go heat it up so it would bend into more of a V shape to fit my lower jaw. -_-

Anyways, these scans took like 45 mins to get. I feel it should have taken 15? I hope everything comes back good enough as the ortho isn't even in the office until next Tuesday and the MSE is supposed to be ordered tomorrow.

Also, I am plagued with insomnia so I had a thought the other night and followed through. Yes, I can afford this treatment, however, I thought why not use a credit card and get cash back, bonus points, something... I found a credit card that gives me a $200 cash back bonus if I spend $1000+ the first month, plus 1% back on this type of purchase. And, if I pay up front in 'cash' at the doctors office I get 5% off their services....

THIS IS SAVING ME AN ADDITIONAL $745 and I have a 12 month 0% APR on the card, just as I would have a 12 month payment plan at the doctors! So, awesome! Much smart! Many responsible! This will also build my already great credit. Yesss.

Anyways, here's my mouth, sans the highest part of my palate-

 

This post was modified 3 months ago 3 times by NoctilucentNikki
ReplyQuote
Posted : 12/06/2019 9:08 pm
AmiMM and Apollo liked
Adam35
New Member

Thanks for sharing your journey, I am going for a Damon braces consultation next week but i'm very curious about MSE, I wish there was more info or reviews of final results of MSE.. I would gladly spend the extra money and 6 months for it if the result is much better than just going with braces.

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Posted : 08/07/2019 5:46 pm
NoctilucentNikki
Active Member

I get the MSE tomorrow!

I got spacers put in on July 17th, and was able to actually see my custom expander so I took a few pics:

https://imgur.com/a/9EgacZh I was 1000% expecting the 8mm to barely fit, but they got the 10mm in there eeekk.

I am pretty scared of the screws but so stressed about so many other things right now that  idgaf anymore. I just want it installed so I can get this process over with. Also, I will not be getting lower braces just yet. I was going too, but the Ortho wants to see how I open up because I might not be stuck with Damon braces. I might be able to use Invisalign!! 😀

 

Wish me luck tomorrow.

 

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Posted : 29/07/2019 7:29 pm
Apollo liked
NoctilucentNikki
Active Member

MSE is in. The whole process was no big deal! However once the numbing shots wore off, the day got a whole lot rougher.

https://imgur.com/a/9SdMAcJ

2 big fat shots came first- these were not pleasant but over quickly and were ok enough to handle. Felt like a chopstick going up through my palet, through bone that's for sure. A few more smaller (4? 6? couldn't tell) shots were next and I really didn't feel much at all when the screws were going in. The ones on the left felt a bit twingey (like a nerve pain?) and the back right one was so squeaky (my bone was the squeaky part she said). And although I didn't feel it then, I do feel something it in my sinuses. Like when you go outside in the dead of winter and breathe cold air in real hard/a brainfreeze. A cold metal feeling. Not painful, but a little weird.

For me though, the worse part was having my mouth open for 2 hours. I've had wretched TMJD for 20 years so it's so fatigued it feel about to fall off. Couple that with no place for my tongue, which is now exhausted, and the obvious now my bites off feeling = HEADACHES FOR DAYS at the least. I've been on ice packs since I got home. Bonus, The perio did call in some Ibuprofen 800 and some Tylenol 3 for me. BLESS HER. But now I can't wear my bite splint. I've been dependent on it for-ev-ver so I'm just going to be a mess until I get stable again. Hopefully today was the worst, but, I know my past and why I am here. 

I ''worked from home'' most of the day and answered emails etc etc, but tomorrow I have to go sit though a class 6am-2:30pm. I'll take it because I won't have to talk much, but I have to figure out how to crank this and be presentable by 5:30am -_- Booo.

Also, dinner was rough. Food gets ALL up in this thing. The legs of it are pretty far off my mouth so entire peas and bites of chicken got all stuck. It was pretty gross but I invested in a water pick and power washed it all out. Tomorrow for work, I'm just packing like 4 shakes and will call it good. Perhaps I will lose this extra 20lbs finally.

Anyways, more updates soon. If anyone is interested. But I need to go pass out, good night.

PS she did take another CBCT scan once we were done, and she'll take another when my treatment is finished. 

-Nikki

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Posted : 30/07/2019 9:09 pm
Rhoste and Apollo liked
MrMaxilla
Active Member

Just curious, how much does this cost?

I'm in Socal like you are, and there's another doctor in my area who does MSE in Koreatown as well. I'm considering going to see her.

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Posted : 01/08/2019 12:49 am
NoctilucentNikki
Active Member
Posted by: @mrmaxilla

Just curious, how much does this cost?

I'm in Socal like you are, and there's another doctor in my area who does MSE in Koreatown as well. I'm considering going to see her.

Hello- I am not in SoCal. I am near Detroit, Michigan.

Total, the orthodontist and periodontist together was between $9000-$10,000 but that is including either damon braces or invisalign. I had a free consult at both.

Overall, $1300 of that total went to the Periodontist for the MSE and installation, and the rest goes to the Orthodontist, who handles everything else.

Pro-tip, if you have good credit, get a credit card with 0% APR for a year or more and use that for payments. That's what I did because A. it helps my credit score B. I get 1% cash back on the card on top of the no interest C. I got a $300 cash back bonus for spending $1000 the first month and D. the Ortho cut 5% off if I paid in full- this all saved me almost an extra $750!

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Posted : 01/08/2019 7:41 am
MrMaxilla
Active Member

Oh okay. Thanks. I saw UCLA and just assumed you were in the area. Okay, prices might be different in my area, but this gives me a good idea of what prices are like. Thanks!

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Posted : 03/08/2019 1:37 am
NoctilucentNikki
Active Member
Posted by: @mrmaxilla

Oh okay. Thanks. I saw UCLA and just assumed you were in the area. Okay, prices might be different in my area, but this gives me a good idea of what prices are like. Thanks!

Actually that's great for you. Dr. Won Moon is from UCLA and that's where the expander goes to be custom made for your specific mouth. Maybe it'll be much easier for you to find a doctor! 

ReplyQuote
Posted : 03/08/2019 9:04 am
Char
 Char
New Member

@noctilucentnikki

How are you feeling now?  I am worried about damage to the nasal floor and sinuses. 

ReplyQuote
Posted : 05/08/2019 6:29 pm
NoctilucentNikki
Active Member
Posted by: @char

@noctilucentnikki

How are you feeling now?  I am worried about damage to the nasal floor and sinuses. 

So far so good. Today is day 7 of turning the expander and no diastema yet, but it's getting a little... Tickley? There's more drag on the expander when I turn it so I feel it's coming in the next few days! No real pain though.

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Posted : 06/08/2019 4:49 pm
Char
 Char
New Member

@noctilucentnikki

Glad to hear you’re good!  Is the cold feeling in the sinuses still there?  How does your tongue feel with the MSE?  Are you able to put your tongue up in the palate at all or get suction?

ReplyQuote
Posted : 06/08/2019 6:40 pm
NoctilucentNikki
Active Member
Posted by: @char

@noctilucentnikki

Glad to hear you’re good!  Is the cold feeling in the sinuses still there?  How does your tongue feel with the MSE?  Are you able to put your tongue up in the palate at all or get suction?

Actually, now that you mention it, yes the cold feeling is gone. I think that was just the first couple of days.

My tongue is OK, but yes it's a little irritated from the metal. I can rest it on the roof of my mouth but I have impressions from the screws and legs of this thing. Not quite actual suction, but I expected worse. I think this is the most annoying part. Aside from only having shakes when I am away from home because SO MUCH food gets caught in the MSE and I can't stand not cleaning right after.

Overall, this is very doable and not painful. I am on day 8 of turning, so it should be open around 3 mm and no stinking diastema yet. 

-_-

ReplyQuote
Posted : 07/08/2019 12:11 pm
Apollo
Reputable Member
Posted by: @noctilucentnikki

I am on day 8 of turning, so it should be open around 3 mm and no stinking diastema yet. 

-_-

Do you know if your provider ever performs corticopuncture? Is that an option if the diastema fails to open?

ReplyQuote
Posted : 07/08/2019 9:44 pm
Roflcopters
Trusted Member
Posted by: @apollo
Posted by: @noctilucentnikki

I am on day 8 of turning, so it should be open around 3 mm and no stinking diastema yet. 

-_-

Do you know if your provider ever performs corticopuncture? Is that an option if the diastema fails to open?

Some practioners perform cortipuncture depending on the patient's age. The two guys i saw, one did 35+, the other 40+. But i think it should be performed regardless after 25.. especially becase i doubt they will refund anything if the expansion fails, idk

ReplyQuote
Posted : 08/08/2019 7:12 pm
Apollo liked
NoctilucentNikki
Active Member
Posted by: @roflcopters
Posted by: @apollo
Posted by: @noctilucentnikki

I am on day 8 of turning, so it should be open around 3 mm and no stinking diastema yet. 

-_-

Do you know if your provider ever performs corticopuncture? Is that an option if the diastema fails to open?

Some practioners perform cortipuncture depending on the patient's age. The two guys i saw, one did 35+, the other 40+. But i think it should be performed regardless after 25.. especially becase i doubt they will refund anything if the expansion fails, idk

I think the Periodontist will if we decide it's necessary. However, like I mentioned earlier, they now have a scale. Age is one thing but not always a correlation on how solid the palate is. The perio has a scale from A-E; people who have a suture that is closed but thin or not super sealed are A-B and very likely to open with a MSE. C is average, in the middle 50/50 chance of opening with a MSE. And D-E are pretty freaking solid and will need the puncture or the surgery. I am a B on her scale so I am expected to open beautifully. They have no doubts yet. For me, I had a check up at the ortho yesterday (which was day 9) and she doesn't expect to see a diastema on me until another week or even 2 just because I am so crowded up front. However, so far, I am progressing as expected 😀

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Posted : 09/08/2019 10:15 pm
Apollo liked
Roflcopters
Trusted Member

Had no idea they had that scale. Thx for the info as usual.

Im scheduled for MSE/MARPE this months 26th! After alot of search online and professional opinions its the only way i can totally fix the top on top/huge crossbite i have without camouflage and tipping teeth. Im honestly already nervous lmao

Im glad to hear your treatment is going as planned! Lets hope you get that glorious diastema in no time so you can breeeaaaathe freely trough that nose. Best of luck

ReplyQuote
Posted : 10/08/2019 10:25 am
Char
 Char
New Member

@noctilucentnikki

How is your expansion going?  Did you get a split?

ReplyQuote
Posted : 23/08/2019 7:44 pm
NoctilucentNikki
Active Member
Posted by: @char

@noctilucentnikki

How is your expansion going?  Did you get a split?

Hey, I must have, but didn't hear a POP or have a crazy intense moment that I can pinpoint. My upper arch feels way wider and I can breathe much better though! Today-tomorrow ish I should be expanded to 10 mm, but last week my ortho said to keep turning until I come in on the 29th. 

Another update then 🙂

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Posted : 24/08/2019 12:49 pm
Apollo liked
NoctilucentNikki
Active Member

Yes, I finally have a diastema!!!!!!!!!!

This morning was all normal and pain free, I turned the MSE as usual I (turn#53) Went to work and an hour later I all of a sudden had a sharp tingly pain at my front teeth and sure as [Rude Language or Insults are not tolerated], over the next half hour to 1 hour, I had a gap. 

Pain is/was very uncomfortable but tolerable. I took 3 ibuprofen because I had to buy off a fixture in a shop and couldn't just hide in a dark conference room. It's like I had to sneeze, but with a knife stabbing me right behind my front 2 middle teeth. My nose has been really runny too.

Unfortunately I had a really rough day on a personal level, for completely different reasons, and cried my face off so I'm super in pain and stuffy. 

The gap happened all between 830 and 930am, and seriously my teeth were overlapped and they're at least 1mm apart. All in 1 hour! And, what confuses me is that I already cranked this beach open 10mm before today. 

It's 10pm now and I just gave it another turn. 54 total, at .2mm each turn. This should be 10.8m. open. I also had to take a Norco at 8pm because it's just so much and the crying really was just icing on the cake today.

I called the Ortho and I'll go in tomorrow at 9am. More details then. Also no picture because like I said, I look terrible.

😁

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Posted : 26/08/2019 10:08 pm
Apollo and AmiMM liked
Apollo
Reputable Member
Posted by: @noctilucentnikki

I also had to take a Norco

So pain meds were prescribed to use after the procedure on an as-needed basis? Were any antibiotics prescribed? I'd like to avoid these as much as possible.

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Posted : 28/08/2019 8:32 pm
NoctilucentNikki
Active Member
Posted by: @apollo
Posted by: @noctilucentnikki

I also had to take a Norco

So pain meds were prescribed to use after the procedure on an as-needed basis? Were any antibiotics prescribed? I'd like to avoid these as much as possible.

I was given like 10 norcos and some ibuprofen 600's when I had the screws put in, and YES I needed them, but really only for 2 days. So I have some left thankfully for Monday when the split happened. I'm back to OK now but for a few days here my head and neck have been really bad. but, that was my main issue before I started this expansion. I have pretty bad TMJD and a messed up neck and shoulder from a car accident. Maybe the split won't cause this for other people. No antibiotics were given though. 

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Posted : 28/08/2019 8:46 pm
Apollo liked
Rhoste
New Member

Thank you so much for sharing your story!!  I am hoping to soon be learning this technique from Dr Moon to offer to my patients and it’s wonderful to hear how it’s tolerated by patients such as yourself.

please continue to post your progress.  

Creating Beautiful Smiles and Vibrant Health

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Posted : 05/09/2019 11:35 am
Char
 Char
New Member

@noctilucentnikki

What is happening now?  Are you ok?  What did the doctor say when you went in?

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Posted : 05/09/2019 12:04 pm
Rockyp33
Reputable Member

So awesome to see people making progress on here can you list the benefits youve noticed so far?

Also in the meantime this would be a good time to retrain your tongue to swallow properly try to do these whenever you remember!.

 

https://www.youtube.com/watch?v=gcI8CvoFxfQ

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Posted : 05/09/2019 11:04 pm
NoctilucentNikki
Active Member

Update: I should of been done turning by now, but I lost the damn wrench. It's so tiny and cute, and easy to lose.

So, I went 5 days without turning, which was apparently OK, the office ordered me one right away though. 5-6 more days and I will be done expanding. No more pain really, just moving along. I go back to the ortho next Thursday morning, and then we will decide if Invisalign will work for me, or if I will need to do Damon braces. I will update again after that appointment.

 

😀

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Posted : 07/09/2019 8:44 am
Rhoste and Apollo liked
Rockyp33
Reputable Member

@NoctilucentNikki could you respond to my previous comment?

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Posted : 07/09/2019 8:02 pm
Apollo
Reputable Member
Posted by: @noctilucentnikki

I go back to the ortho next Thursday morning, and then we will decide if Invisalign will work for me, or if I will need to do Damon braces.

You wait several months with the MSE in place to stabilize the expansion before starting braces or clear aligners, right?

ReplyQuote
Posted : 07/09/2019 10:31 pm
Rhoste
New Member

@noctilucentnikki

Please post progress photos if you have some.  I’d love to see your diastema 😀

Creating Beautiful Smiles and Vibrant Health

ReplyQuote
Posted : 08/09/2019 11:22 am
NoctilucentNikki
Active Member
Posted by: @rockyp33

So awesome to see people making progress on here can you list the benefits youve noticed so far?

Also in the meantime this would be a good time to retrain your tongue to swallow properly try to do these whenever you remember!.

 

https://www.youtube.com/watch?v=gcI8CvoFxfQ

 

Sorry dude, my life has been super crazy lately. I just clicked your link and I'm sorry, Mew bores me to death. I can't handle his slo mo talking. But, I think I swallow just fine. However, the MSE is still killing my tongue. It's super sore.

I do think I am breathing better. Allergy triggers have been high here in Michigan, and to be honest I have been crying a lot, but overall I see an improvement. 

@Apollo @Char @Rhoste

Update-

I lost the wrench and didn't get to turn the MSE for 5 days, then I managed a few half turns. I got a semi decent photo of the MSE today and you can see here, I bent it! I think I over expanded. I am waiting to hear back from the Ortho and I go in on Thursday. I will have a better update then. But, I can't turn it any more. I should have 10 turns left but it just won't go. The ortho says this one has 75 turns, I think I got 65 in. 

 

Here is a pic of the diastema 1 HOUR after the split. It's larger now but I look terrible. I'll post a better pic soon.

Also a pic of the bent MSE from this morning:

https://imgur.com/a/BkSHViO

 

ReplyQuote
Posted : 08/09/2019 10:04 pm
Apollo
Reputable Member
Posted by: @noctilucentnikki

However, the MSE is still killing my tongue. It's super sore.

Ronald Ead has this video about using orthodontic wax to protect the tongue from the MSE:

https://www.youtube.com/watch?v=Q_TyBofqCTk

Posted by: @noctilucentnikki

I got a semi decent photo of the MSE today and you can see here, I bent it! I think I over expanded. I am waiting to hear back from the Ortho and I go in on Thursday. I will have a better update then. But, I can't turn it any more. I should have 10 turns left but it just won't go. The ortho says this one has 75 turns, I think I got 65 in. 

On his blog, Ead also reported bending of the walls beside the nut, preventing him from turning the wrench. His orthodontist told him this is common and straightened out the metal at his next appointment, allowing him to turn farther.

https://ronaldead.com/blog/mse-5-weeks-49-turns

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Posted : 09/09/2019 3:04 pm
Lian
 Lian
Active Member

@noctilucentnikki

Hi Nikki,

Thanks so much for all of your sharing! How is it that they test where you are on that scale of suture fusion? Is it unique to this periodontist or is it a well known thing that I could potentially find locally? 

 

Thanks! 

This post was modified 1 week ago by Lian
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Posted : 10/09/2019 8:22 am
Rhoste
New Member

@noctilucentnikki

I’ve been so interested to know how your TMJ pain has been through this process.  I know that was your primary reason for treatment.

Hope you are well.😊

Creating Beautiful Smiles and Vibrant Health

ReplyQuote
Posted : 10/09/2019 11:43 am
Rockyp33
Reputable Member

@noctilucentnikki

I hear you but swallowing is vital if you dont learn to swallow properly your posture will be bad and youll relapse to an extent.

1. grab cup o fwater go in mirror

2. sip water hold it and make cheesiest grin possible and raise eyebrows

3. hold facial posture and swallow

This post was modified 1 week ago by Rockyp33
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Posted : 11/09/2019 9:59 pm
DrMario
Active Member

I am going through the same exact journey as you! I am at the phase where I have my spacers. Next appointment they will get the images for the MSE to order and fit me.

I am very excited. Hopefully I will be able to breathe a lot better through my nose. Have you noticed any changes at all to the shape of your nose? Perhaps it's a bit wider? I heard that is common in skeletal/palate expansion.

This post was modified 1 week ago by DrMario
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Posted : 12/09/2019 5:27 pm
Apollo liked
Share:

As you undergo correction in the near future, please consider keeping records for your own sake and for others. Pictures of dental impressions, scans, medical reports reports can be very helpful even with all personally identifying information blocked out.

Your input could help many, many people

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