My Jaw Has Been Locked For Over 3 YEARS

My jaw has been locked (closed lock) for over 3 years now. This is my story / journey with my jaw over the past few years. I've been to several specialists, physical therapists, surgeons, etc. In 2018, I had a procedure called jaw arthrocentesis. Many have recommended surgery, but I've opted against it due to low success rates.
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My etsy store → www.etsy.com/shop/FusedWithLo...
My instagram → / gonnetopots
My blog → gonetopots.com
My facebook page → / gonetopots.rachael
My twitter → / gone_to_pots
Some of the links in the description may be affiliate links! This basically means that if you purchase something through the link, I might receive a small commission (at no extra charge to you). Thank you so much for supporting my channel! 🎗
These are some of the things I've tried for my jaw:
-Manipulation under anesthesia (2x)
-Jaw Arthrocentesis Surgery/ Procedure
-Lots of physical therapy
-Botox
-Muscle relaxers
-Prolotherapy
-Jaw splints
Unfortunately, it is still locked/dislocated. I've grown to get used to it, and thankfully it isn't one of my most debilitating symptoms.
#LockedJaw #TMJD

[@The333Wanderer]

Rachael, you do not deserve what you live with every day. However, every time you post, I begin again to believe that there is hope for all people in need. You are a very bright star in a sometimes very dark sky. 🌹🌹🌹😇😇😇

[@HealingWithRachael]

Thank you so much for your kind words! 😊

[@jessiew8503]

this is the only video on youtube i have found that explains exactly what i am experiencing with my jaw. its locked and wont open past a certain point and has been like this for years now, and i hate when the doctors ask for you to open ur mouth up wider because i cant either!

[@HealingWithRachael]

Wow!! I’m sorry you’re dealing with this too. I knew I couldn’t be the only one!

[@hopemackelprang504]

You are amazing. I love, love, love your honesty, openness and faith. Love you, sweet thing!

[@qltrader9353]

You are such an inspiration. Good luck for the future.

[@brionnapickens1080]

Mine has been locked for over three years as well. Blessings to you ❤️

[@BeanieBoyMoto]

You're a Real Fighter Rachael ... A True Champion I just subbed 🤟 Beanie

[@imstillhere3753]

Praying for you hun. 🙏❤️

[@HealingWithRachael]

Thank you so much!

[@eltonmaragona9014]

Hello Rachel! ❤️ Big fan of your channel. 🙏 You mentioned before that betablocker helped your POTS - Do you mind mentioning how much mg you take? Thank you! 🙌

[@TheVictoria3233]

You should try getting a consultation with Joseph McCain in Boston. He is a great surgeon with lots of experience with patients like you. You should also get an MRI to see what is going on with the joint! I have the same thing and am getting surgery with him next year.

[@silverkiss37]

Hello Rachel. Wow nice to meet you. I am very sorry for all you are going through but honestly God knows, right? It's very strange that I found your channel. We have many of the same symptoms but so far for me the only real connection I know of for sure is the chronic Lyme's. I feel that I most likely have CCI as well, but the EDS I'm not totally sure about. I have horrible pain in my back, head, neck and ribs. I have horrible nerve pain so bad that at times i'm thankful the truly severe pain only comes for minutes at a time. But I am in pain 24 hours a day. It keeps me up at night for hours every night. At times I even have panic attacks because the pain is so severe. Many times I can't breathe right. My lungs don't seem to want to expand. My ears ring in about six different tones at all times and I have the sound of drums echoing in my ears with the beat of my heart. My ribs click and pop constantly and I recently found out that I have a fractured rib and have no idea how it even became broken! I have also been diagnosed with Gastroparesis, Fibromyalgia (of course), pretty bad back issues, major TMJ, Hashimotos thyroid disease, esophageal dysmotility and I believe I have Slipping Rib Syndrome. I know this is a lot, but I don't have good medical insurance, I have state coverage and it has been a major uphill battle to even get a doctor to care long enough, or to see one who is truly educated, or to find one who doesn't want to just throw medication at me or send me home with no answers at all. I have done all of the research on my own and I feel like my doctors wouldn't even have a clue if I wasn't doing all the work for them. Meanwhile my mental health is suffering horribly from all the pain and suffering with no help, just struggling to hold on. All I want is some answers and I feel like maybe I'm a little closer now because of you simply sharing your story. I hope that God has brought me to you because I really need some hope and you certainly give me much!!! Thanks for being such a trooper and thanks for sharing your faith as well. You'll be in my prayers sweet girl!

[@annsleyadams7133]

My jaw isn't locked, but the left side has been hurting a good bit pretty consistently since last summer :/ the MRI showed that the cartilage disc is displaced, which is apparently common/usually doesn't cause issues. I've been dealing with chronic Lyme issues for 5ish years but had teeth grinding/have been wearing a night guard since shortly before that. My dentist referred me to a TMJ specialist who's really pushing for arthroscopy surgery, but I'm very hesitant. My Lyme doctor thinks it could be inflammation-related and I'm about to start an herbal antimicrobial treatment called Biocidin, so I'm hoping that combined with a new night guard and some TMJ exercises will help. It's a [literal] pain though. So sorry you've been dealing with it on such an intense level!!

[@fame_supermansaw5979]

Racheal I had my chiari surgery a while ago and I recovered amazingly because of your motavation thank you!!

[@HealingWithRachael]

That is so sweet of you to say! I'm glad to hear you are recovering well. ♥️ Wishing you the very best!

[@fame_supermansaw5979]

@@HealingWithRachael thank you so much 🧡

[@thistooiseds3215]

You’re such a sweetheart! I hope others watching you are inspired by your disposition and perspective on the trials of living with multiple chronic illnesses. Answering your question: I’ve had my jaw lock up for three days. A steroid pack was prescribed on day one. It was very very painful... bone on bone. I’ve had another dislocation that lasted 1.5 years - my right greater toe. It was severely deformed for 1.5 years until I had a series of steroid injections into my hip of the same leg. That released the connective tissues enough that it could move back into place. I’m certain the gravitational force of my body weight factored into how “easily” it moved into place. It was extraordinarily excruciating for the first three days and remained painful the entire time it was dislocated. Have you had steroids injections into the area around your locked jaw?

[@joenacrelli890]

Hey Rachel. We have almost exactly the same symptom complex, and your videos have been very helpful. If you are looking for more info regarding the Jaw/Teeth/EDS/Craniocervical/lyme connection. Betterhealthguy podcasts: Klinghardt Conversations 4, Hypermobility/EDS have great info:)

[@HealingWithRachael]

Thanks for sharing!

[@kiyat2937]

I feel your pain. My jaw has been locked for 2 years. I’ve been to doctors, dentist, etc. I just use home remedies and therapeutics.

[@HealingWithRachael]

I'm so sorry to hear that, Kiya! Hope you find something that helps!

[@iammellbell]

This is crazy and so different from the typical jaw experience with EDS or Lyme, but then maybe lots of other people have had the same experience and we just don't know :O I hope it does unlock one day for you. Does it affect what and how you can eat a lot?

[@HealingWithRachael]

Exactly! I personally haven't heard of anyone else with the same issues, but I'm sure there are least a few out there. 😅 As for what I eat, I try to have softer foods and avoid anything hard or chewy. I've had phases where I've mostly had to have liquids/very soft foods but thankfully I'm able to eat more things now! ❤️️ Hope you're hanging in there! Sending love!

[@iammellbell]

@@HealingWithRachael That must be very hard! Hope you're hanging in there too!

[@kbellmurray]

I do. I have a similar issue. It opens a little wider though. About an inch or two centimetres. It’s been this way my whole life. I have EDS, Chiari, CCI, POTs. I had the fusion in 2014. They say I have MS. I think it’s more like neuro Lyme or something though now. I am looking into it. I should probably try prolotherapy.

[@samiam8764]

My jaw has been locked for almost 8 months now...I have Lyme, eds, cervical instability, chiari, klippel feil syndrome, TMj, hyper adrenergic POTS, tethered cord, spina bifida .....and more....I've felt so alone in this !! Someone posted your video....and here I am !! I'm so sorry you have gone through this....same exact thing happening to me... nothing is helping me either....sooo much pain 😖 shooting in my jaw, brain, eye and ear...my tongue doesn't work right and it affects my throat as well....did you have any of this too ?? Yes!! I have images of them trying to pry it open and breaking my jaw...it makes me cringe thinking about it 😖

[@snehaentertainment7356]

Is your POTS resolved now? Also if your pots also increased your blood pressure when you are standing compared to when you are lying down?

[@kbellmurray]

Mine has not been able to open for more than an inch for my entire life. I can fit two fingers in though. It opens a bit wider than yours. It is a bit difficult with dentists. It is one of those things I never worried about too much because of all the other health problems. This is definitely relatable. I’m looking into Lyme now thanks to your other video btw. Thank you.

[@peace-pp6di]

Does your jaw pop or click when you open wider ?

[@chronicallysam6685]

Does prolotherapy help? I have had botox, splints, braces for 10 years in all. They have not recommended surgery. My jaw is dislocated on the right side when I open it. It has been this way 13 years. I have spasms when I chew any texture. They say I have both oromandibular dystonia and TMJ. While others argue I have EDS with horrible TMJ issues. Everything I eat is liquid or puree. I also have POTS and neck issues. We sound very similar with our cases.

[@MrBarboza92]

How/what do you eat if you don’t mind me asking? My dad is In a similar situation

[@cleverhype]

That's crazy, I have tmj and it's also have nightguard. I've had time when I would chew something and I'd get insanely sharp pain in my ear.

[@andream8176]

My jaw is almost the same.. and it did get worse after my fusion C0-c2 with Dr. H ... I hate going to the dentist!! Lol, I’m use to it now. I’m the same with my other health issues take more priority! Currently dislocated c4/c5 & subluxation under my fusion to T2

[@HealingWithRachael]

I'm sorry to hear you're struggling with all those things. You're not alone.

[@kbellmurray]

I think mine has always been locked at not opening more than an inch. I had the skull to C2 with Dr. H as well. I don’t think that made it worse but... I have extremely tight neck and face muscles.

[@Goat.Cheese]

My TMJ specialist wants me to get botox injections to help my jaw (I have EDS). Did you ever do botox?

[@noyes2069]

Many with EDS say that the jaw is their worst joint. So you are definitely not alone there. Although I do wonder, if locked jaw is better than a loose jaw that constantly dislocates which many with EDS suffer from. My jaw problems started with a dentist appointment. I would strongly advice against eating sugary things and also recommend you try a "waterpik" even with your very limited opening you can get it in there. This will prevent decay of your teeth.

[@HealingWithRachael]

Thanks for sharing! My jaw was actually hypermobile before going locked, its more like a permanent dislocation, so I wouldn't think it would be better, but I know everyone is different!

[@iammellbell]

@@HealingWithRachael It must be so frustrating for you because you would just want to pop it back in, it's like trying to walk on a dislocated knee! Does it hurt often?

[@TheShumoby]

Did you ever try mewing after this incident? It's where you keep your tongue on the roof of your palate and close your mouth. It expands your palate

[@AndreaMolinari-tl5bb]

Te amo mucho. Today I was crying because I thought: how will I rehabilitate with DNRS if I have my jaw messed up 😢 how can DNRS help me. I feel vertigo, neck pain, dizzines. Did u feel vertigo too? I want to be better but bedridden 🥺 holly molly this journey……. Gracias Rachel

[@Gabriel-fi6wh]

my jaw locks about 2-3 times a week (every week) & it usually locks first thing when i wake up in the morning….when it locks it’s kind of similar to your problem….basically i’m unable to open my mouth all the way & if i force it open it really hurts and i feel a bunch of pressure on the right side of my face. whenever it locks it’s always a fun game of waiting how long it will take to unlock…. sometimes it takes 2/3 minutes to unlock and other times it has taken up to 24 hours to unlock…. my jaw is locked right now as i’m typing this and i’m on about hour 10 with it being locked….i really hope it unlocks soon

[@MrsPaulaTorres]

I’ve felt snapping pain/popping/stiffness in the joint between both jaws a few times and it freaked me the hell out. I did not say it to anyone tho. I was diagnosed with hypermobility syndrome a few years ago, but it recently discovered Ehler danlos syndrome and I think I have it and I think my step sister form fathers side have it. I plan to go to geneticist to ask these questions. I’ve felt like I Play Person my whole life as everything’s been difficult and different than how I see others live

[@Gabriel-fi6wh]

do you know if braces can affect lock jaw? today was the first day i wore my retainers after 3 days and it locked

[@Kirasanban]

After emergency C0-C2 fusion for internal decapitation from EDS my jaw was stuck at 12mm maximum opening. It’s been 3 years of PRP, physical therapy, GELB/ ALF dental appliances and I’m at 20mm. I got to 24mm but then regressed. PRP seems to have helped me the most but it’s like I have to do the same joints every 4 months or my rate of breakdown outpaces my ability to heal. My TMJ dentist has brought up surgery to recapture the discs but I keep hearing of EDS patients just having the sutures rip and the discs sliding right back off the TMJ, so I’m not sure it’s worth the hypertrophic scar tissue.

[@marthafranchescaflores3235]

Same experiences :(( As of now, may jaw has been locked for almost a year :((

[@beckytaf]

Hello Rachel thank you for share your experience. Please I would love to PM I'm having the same problems like you and you are helping me a lot please is there any way that I can contact you? a while ago I send u a message through fb but I didn't get an answer. Please let me know. I would love to chat with u.

[@10roombizarro55]

My jaw locked shut for 30 days and now it happens every night

[@miraclemaker5135]

I have a jaw lock, but now it just became jaw clicking, and it's been almost 4 years now.

[@miraclemaker5135]

It still hasn't cure yet

[@enidpena6336]

❤️🙏

[@hollywalker842]

Would you be open to talking?

[@IrfanKhan-xk2we]

jaw shavaring athahi sar

[@IrfanKhan-xk2we]

jaw shavaring vastundi

[@JustME-ft4di]

Since my CCI has got bad my skull has collapsed in to neck and jaw has sort of collapsed so back teeth are now touching all the time and front ones are open and can’t close. Can stick tongue through front teeth with back ones shut. Nothing meets properly. So, interesting your surgery has made yours worse. My oral surgeon says neck has nothing to do with jaw because he is an idiot who is so focussed on the jaw he can’t see that upper jaw is literally connected to neck.