6-22-2019

I have an appointment to have the spacers put in AND lower braces put on!

July 17th is all starts. 7-10 days after that will be the big MSE day! 

https://damonbraces.com/treatment/adult/

https://youtu.be/fRPFx3rwoe8

My ortho is choosing to go with Damon Braces. The website is kind of cheesy but they seem fine. Clearly I need more help than Invisalign can offer. I am not sure, but I might need to wait the full 6 months of wearing the MSE before I can have the top ones on though.

More to come.

UPDATE July 17th:
We did not put on the lower braces. Turns out I may be just fine in Invisalign!! :D
Ortho wants to see how I open up and we can decide in a month or so which way to go.
Also the spacers were fine. Barely knew they were in. I just had to remember not to floss them out. 

6-12-2019 Scan

Hello world-

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-

6-6-2019 Helpful Info

https://www.moonmse.com/mse-article

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

https://www.dentistry.ucla.edu/learning/ucla-orthodontics

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

and bless this woman for sharing:
https://youtu.be/OmdpelNHGys

Take some of these users with a few grains of salt, but great discusses are happening here:
https://the-great-work.org/

6-6-2019 - I made the decision, MSE here we go.

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!

4-30-2019 Email Update

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.

4-25-2019 Periodontist Update

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 ass 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.

Very straight cervical spine.

My upper and lower teeth are very tipped in. This view shows the lower tip pretty well.

Except for a few front teeth, non of my teeth come together. Apparently I don't chew very well :(

Me!

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. Always hard to breathe. 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. 

April 1st, 2019 - MSE Discovery

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. 

The more I understand the less I will be afraid of something, so I have been reading about a MSE, a form of 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 TMJ Disorder bite guards unless eating. (No actual orthodontics for me as a kid.) 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 it causes 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. 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 not 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.