Totally New Here... Just wanted to Introduce Myself :)

General
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Hi to everyone here!

I'm 25, and I just found out this week that I have ES. Let me share my story.

I'm thinking that my troubles all started in my early teen years just after I had my braces removed. It was about a year afterwards when I was 15 years old that I started having a clicking sound in my left jaw, it didn't hurt at all and I kind of thought it was funny. I was totally clueless to TMJ disorder and looking back I wish now I hadn't been such an ignorant kid about it. But...I can't go back now.

Anyway, by the time I was 21 it was clear to me that this clicking sound was never funny and my jaw had gotten to the place where it was effecting everything, my eating, sleeping, everything in my daily life. I was in pain from it off and on, headaches, everything that goes with TMJ. After looking in to everything I could, I finally learned how to cope and just deal with the problem. I learned how not to EVER yawn, and to use a fork for everything, from burgers to bananas.

If I remember right, I think I was about 21 when I first started feeling like there was something stuck in my throat, but I was too busy trying to workout the TMJ problem that I didn't pay too much attention to it. By the time I was 23, I could feel "it" (whatever "it" was) most all the time. I did go a Dr. once then, but he saw nothing and I wasn't able to seek better care at that time. I learned to ignore "it" again for a few more years.

This Feb, I had a Tonsillectomy because of severely cryptic tonsils, I had been having a lot of trouble with them for about 4 years. When I started getting lots of ear pain I knew that I really needed to face it and have it looked at (as you can tell, I don't go to the Dr. unless I absolutely have to!:). They took one look and said they have to go. So I had them removed at age 24. That was the most painful sore throat! I've had Strep several times in my growing up years, Strep is nothing compared to that!

When I had the tonsillectomy I thought for sure it would take care of the feeling of something stuck in my throat, so you can imagine my surprise when a month later I STILL felt "it"!

Well, I just found out this week that I do have ES, and my Dr. is working on getting me approved for surgery.

I do have few questions for you all:

What kind of ES do I have? It sounds really confusing.

Do you think the braces were to blame?

Do you think the TMJ has caused the ES or the ES has caused the TMJ?

And one more:

Have any of you found that your TMJ symptoms were relieved, even a little after the ES surgery? Oh, I don't think I will have a complete removal, but just a partial. How do you think that will effect the TMJ?

Thanks so much!

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Hey Loco, I think its important that you would get it all removed as the sp can grow back at any point and time. Ive read where alot of people have said that they wish their dr would have taken it all as they were still in pain 1 year later. That is def. something to bring up with your doctor.

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Yes, I agree, get them to take out as much as possible for the best results! It's best not to worry what type of ES you have- clearly the styloids are causing you problems, so need to be removed. The original classification of ES was classic ES (caused by tonsillectomy or pharyngeal trauma), or vascular ES if the pain is felt along the route of the carotid arteries. But doctors don't understand the causes etc. themselves, and the treatment's the same regardless so don't worry. If it's vascular ES the symptoms are often dizziness, fainting, especially when the head is in certain positions.

I can't imagine the braces are to blame at all, nor that either condition has caused the other, but some of your TMJD symptoms could be from the ES. It can give pain around the jaw, and cause pain opening the mouth wide or yawning, but hopefully these might be a bit easier after surgery!

Have you looked at the doctors list? It's worth looking for someone who has experience with ES.

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I had Eagles and TMJ. I think it is possible that long term TMJ may have caused an inflammatory response which caused the Eagles, but I am only guessing.

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Thanks for all your advice! This is all so knew to me and I'm kinda worried about getting the best possible treatment. I hope I can convince my Dr. to have all of the SP as possible removed, but I don't know if he even does that. We'll see, I go back in one month after I try all these Meds he has me on. Which I am very surprised at how they are effecting my condition. I'm on a Steroid, and NSAID and since taking it I've found that I must have gotten very used to swelling in my throat. Before the drugs it only felt like a Q-tip pushing into my throat, but now it really feels like a toothpick, I actually feel worse from the Meds helping to obviously relieve swelling.

I have one question, does anyone know or has anyone used Dr. Bumpous in U of L Physicians in Louisville Ky? I found him in the directory and I wonder if he is able to remove all of the SP?

Thanks so much! I plan on posting here a lot about how my journey goes so that others have more info! :)

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I agree with the inflammatory response triggered mine...After I had my baby I was diagnosed with Hashimotos and my antibodies were sky high....shortly after that I started to get ES pain....Lymphnodes in neck are still swollen 1 1/2 later

emma said:

I had Eagles and TMJ. I think it is possible that long term TMJ may have caused an inflammatory response which caused the Eagles, but I am only guessing.

1 Like
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Yeah, I'm thinking the TMJ probably caused the ES too.

I've been reading thru past posts, and I'm wondering if anyone has ever had the feeling of sand going down the throat when swallowing? I had that for 2 years about 2 years ago, but I no longer have it. When I did though, it was SO STRANGE! I had no idea what it was, but it usually ALWAYS happen at night when I would lay down and if I went to bed hungry, I usually had to get up and eat a piece of bread because I thought I was going to throw up; it caused me to gag so bad.

The more I read about the ES, the more symptoms I realize I am having.

I have always had constant pressure in the back of my head on the left side. Which is always making me want to move my head. The pressure moves down into my left shoulder, and that is actually what hurts, just my shoulder and the spot in my throat. Several times throughout the day I am turning my head to pop my neck, I can only pop it turning to the right, but it brings SO much relief when I do and doesn't hurt at all.

Sometimes I feel a catch in the front of my throat, like something got stuck then flicks up as I move my neck.

I have noticed that I seem to have some sort of vision "problem", but I can hardly describe what it is. Kinda like blurry, kinda narrowed around the edges, Kinda like splotchy bright patches all over my vision. Could this be vascular at all? I can see just fine, but at the same time, I wonder if I have just gotten used to what is not supposed to be normal.

Also, I have the LOUD ringing ears; that actually started way back when I was around 16. I've gotten used to it though, along with who knows how many other things. I also have sensitive hearing, any sharp or load noises close to my ears really hurts, but I hear just fine.

Well, the more I learn about this the more I realize I DO NOT want to ignore it and just go on. I don't want ten years from now to have a bone sticking out my throat! :)

I just hope and pray that I am able to talk to my Dr. about everything (I'm SO SHY when it comes to Dr.s!). I am getting so excited about the possibility that I could actually live without all these strange feelings I've been have the past 4 almost 5 years.

Well, I am usually NEVER up this late, but thanks to the Steroids, I don't feel sleepy at all! I have trouble sleeping anyway, so this doesn't help. :)

Thanks to you all!



Kelx said:

I agree with the inflammatory response triggered mine...After I had my baby I was diagnosed with Hashimotos and my antibodies were sky high....shortly after that I started to get ES pain....Lymphnodes in neck are still swollen 1 1/2 later

emma said:

I had Eagles and TMJ. I think it is possible that long term TMJ may have caused an inflammatory response which caused the Eagles, but I am only guessing.

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Oh Kelx! I ment to ask you about the Hashimotos! My mom had that and she had to have her thryriod completely removed. I hope you are well, she had such a struggle with that. But, now she is doing well. But how are you doing with the Hashimotos?

Also, I saw your post about all the pain your in because of ES, hang in there! :) I don't have crazy pain like that, but I can see where it can get really painful!

Thanks again!

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Loco- it might be an idea to get your vision checked. From what I've read, vascular Es can cause vision problems if the arteries are affected as it affects the blood supply to the eye, or otherwise if the veins are affected it can cause increased pressure in the brain, which can then restrict the blood flow to the eyes and the ophthalmic nerve.

I think because ES symptoms can come on gradually you can lose sight (pardon the pun!) of what's normal!!

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In fine with hashimotos… My antibodies are slowly going down…I don’t have thyroid pain, just ES pain…I take thyroid medications now for 15 years. Had hypo since I was 15. I grind my teeth lots and have been for 15 years too and just finally started to wear a splint. I think my thyroid information, along with intense grinding caused this all.

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Thats one thing that I have no idea about, whether I grind my teeth at night or not. I have 2 sisters that do, so I might, too. :) I hope not.
I have tried splints before because of the TMJ issues, but they gag me and I end up taking them out in my sleep, then finding it poking into my back! :) I should try again though, its been a few years.


Kelx said:

In fine with hashimotos... My antibodies are slowly going down...I don't have thyroid pain, just ES pain...I take thyroid medications now for 15 years. Had hypo since I was 15. I grind my teeth lots and have been for 15 years too and just finally started to wear a splint. I think my thyroid information, along with intense grinding caused this all.
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Your dentist will be able too tell if your grind your teeth. Everything time I went to the dentist they kept telling me I grinded because my enamel was wearing out. I wouldn’t have noticed otherwise I hate wearing it. I usually take it out in the middle of the night it bothers me lol

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If you decide to get another splint, have your dentist make it for your bottom teeth. It used to be all TMJ & teeth grinding splints were made for the upper jaw, but now they've learned putting the splint on the lower jaw is much more effective. I have terrible TMJ which also started when I was a teenager (I'm 59 now). I clench my teeth but don't grind. I fought w/ upper jaw splints off & on for years & finally gave up till my current dentist had me try one on my lower jaw. It's helped quite a bit. Also, in answer to an earlier question, having my styloids removed has definitely helped my TMJ symptoms become much less pronounced.

:)

LocoPurple said:

Thats one thing that I have no idea about, whether I grind my teeth at night or not. I have 2 sisters that do, so I might, too. :) I hope not.
I have tried splints before because of the TMJ issues, but they gag me and I end up taking them out in my sleep, then finding it poking into my back! :) I should try again though, its been a few years.


Kelx said:

In fine with hashimotos... My antibodies are slowly going down...I don't have thyroid pain, just ES pain...I take thyroid medications now for 15 years. Had hypo since I was 15. I grind my teeth lots and have been for 15 years too and just finally started to wear a splint. I think my thyroid information, along with intense grinding caused this all.
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Thanks so much Isaiah 40:31. I have never heard of a lower splint before. I am really hoping that getting the ES removed will help my TMJ problems. Maybe I should look into getting a lower splint though.

Before being diagnosed with ES I had excepted the fact that I will probably live with the TMJ problems the rest of my life; I cannot open wide enough to take a normal size bite, just to open I have to shift my jaw to the left, i CANNOT open while laying down. I've learned to just deal with the pain of it and learned to be careful to not make it any worse. Now, however, I am so excited that I could possible find some relief by having the ES taken care of and of course to have the constant poking feeling removed. And now, too, I am very surprised by how many ES symptoms I have. Everything makes so much more since!

This site is so helpful! Thank you all.

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Since my second ES surgery, I have begun to see a chiropractor who is doing laser treatments, massage & jaw adjustments to help with my first bite syndrome (developed after my first surgery) and my TMJ. Everything is so much better since the 5 visits I've had with him. My jaw has never stayed in the correct position after jaw work in the past, but this doctor seems to have "the knack" and my jaw joints seem to be staying in the correct position now. I'm so thankful. I totally sympathize w/ your TMJ pain. As I said, mine started as a teenager. I even got braces on my teeth to help re-align my bite when I was 48 because my jaw would lock open when I yawned (no fun!!). I wore them for 2 years and had TMJ relief for 4-5 years after they were taken off then the pain & problems returned. Sadly, I think TMJ is a lifelong problem but having the ES surgeries certainly helped relieve a lot of my TMJ symptoms. I will pray that surgery will cure yours!

:)

LocoPurple said:

Thanks so much Isaiah 40:31. I have never heard of a lower splint before. I am really hoping that getting the ES removed will help my TMJ problems. Maybe I should look into getting a lower splint though.

Before being diagnosed with ES I had excepted the fact that I will probably live with the TMJ problems the rest of my life; I cannot open wide enough to take a normal size bite, just to open I have to shift my jaw to the left, i CANNOT open while laying down. I've learned to just deal with the pain of it and learned to be careful to not make it any worse. Now, however, I am so excited that I could possible find some relief by having the ES taken care of and of course to have the constant poking feeling removed. And now, too, I am very surprised by how many ES symptoms I have. Everything makes so much more since!

This site is so helpful! Thank you all.

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Isaiah 40:31, looks like there is so much to learn about my condition(s). I didn't know what FBS was before you mentioned it, but doing just a little research has me kinda worried about getting that. I hope I don't get that...

And I totally know about the jaw getting locked opened! I have taught/trained/learned and done everything I could do to teach myself how to NEVER yawn. Its just too painful.

(maybe I should join a TMJ forum, I talk more about TMJ then ES :)

Anyway, I really appreciate your praying for me. Before I joined this sight I saw you and all the encouragement you were giving to others. I hoped I would run into you. :) BTW, I love the Lord our Maker and the whole chapter where the verse that you have chosen as your "name" has been a source of encouragement for me too . :)

We serve an Awesome God! :)