Some times i get so scared of the symptoms

I am diagnosed ES and are getting surgery next wednesday 9th january. It has been easier to handle the symptoms now I know what causes it. I have right side facepain, earpain, swallowing a lot, lump in throat, mucus, pain in right tonsil, swollen neck, arm and shoulder pain, eye feeling weird etc.
But some days are harder. Because of the ES I sleep bad. When I lie down, I get a strange feeling in my head. Like a vibrating, tingeling sensation. Some days I also have a vibrating sensation in arms and chest. I feel it is hard to breathe, I feel a bit nauseous and some stomach ache.
Both my styloids are aprox 4 cm and I can feel my right under my tonsil.
Some days, like today, I find it hard to believe that my styloids can make me feel so sick :pensive:.
Just needed to get it of my chest

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Hi Northstar,

That’s why we’re here! ES is a funny ailment because the symptoms come & go & change & new ones show up to add to what’s already there. The funny feeling in your head could mean that when you’re lying down, you’re getting some vascular compression. You might try sleeping w/ your head elevated. That could help.

Your accessory nerve innervates your shoulders & arms, & your vagus nerve affects heart rate, some gastrointestinal functions & can influence anxiety levels. These 2 cranial nerves are often irritated by elongated styloids or calcified s-h ligaments so your shoulder/arm pain & stomach ache might be related to that.

I’m so glad your surgery is soon. Do you know if your doctor will do your styloidectomy externally or intraorally? If it’s external, try to have a discussion to let your surgeon know you’d like your styloids removed at your skull base, & you’d like your stylohyoid ligaments removed. This is the best way to prevent future problems w/ ES.

Most doctors do not do bilateral surgery but require 2 separate surgeries in bilateral cases because of the amount of swelling that occurs in the throat post op. However, there have been forum members who’ve had successful bilateral surgeries. It does take a bit longer to recover though.

I hope you have a wonderful year of healing & feeling good again in 2019.

Happy New Year a little early!

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I had dreadful vascular symptoms at times & it had got pretty scary before my surgery, so I know how you feel, but not long to go now…nights were the worst & I did end up sleeping in a recliner chair quite often!
There’s lots of info in the Newbies Guide about what to expect after surgery if you’ve not already read it which should help prepare you.
Hope it goes well; as Isaiah says it sounds like you may have some vascular symptoms, & there can be improvements quickly after surgery with those. Thinking of you, & feel free to vent on here in the mean time as we do understand!

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Thank you for your replys. It is calming to know that Im not alone feeling this way. I feel like im trapped in a body that dont work like it used to do, I just want to be me again.
I dont know the details yet, just got the date. Will get the details later this week after the hollyday ends on wednesday.
Happy new year!

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On some of my worst days before I had a “plan” I would say things like “I’m so frustrated with the body I have to walk around in all day, it’s broken!” We’re all trying to “fix” things together here! :heart:

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Northstar you may want to consider investing in a recliner as well. Don’t fight laying down to sleep, try sleeping sitting up or partially reclined. With all the holiday sales you should be able to find one for a good price.

Nothing is more important than sleep, especially when recovering from surgery!

azurelle

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It is so hard when your body doesn’t let you do the things you have to do much less the things you love to do. I think most of us have been there or are still struggling with it. One of the worst problems is your loved ones not understanding what you’re going through. Just know that there is light at the end of the tunnel and there are people on this site that will let you rant and get things off of your chest and maybe give you some advise that could help. I think most of us believe that this is under diagnosed and there are too many Dr’s that think it’s so rare that it can’t be what’s causing your symptoms. That’s why most of us have gone years without getting properly diagnosed and then once diagnosed more years trying to find a Dr to help.

May God bless you in this New Year and may 2019 find you relief.

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Well put ! My family de finitely does not get it . I have been a solid guy my entire life hard worker, good father and husband . My family and my wife have basically told me I’m depressed and it’s in my head ! This condition has so many daunting symptoms an I’ve tried to get them to read a few things and they just don’t get it . My sister is a nurse and told me yesterday it’s in my head and I need to get on depression medication! I’ve showed my sister video about Es and the list of symptoms and she dismissed me . I told her my neurologist has confirmed my diagnosis and I currently have an appointment with a specialist to be advised on treatment or surgery ! My wife clearly believes I should continue working and just deal with it :frowning: It’s makes everything more difficult when it feels like the people you love don’t care enough to support you ! It’s true I’m bottomed out but depression medication won’t stop my Styloid ligament from grinding on my nerves and creating symptoms that stop me from doing the things I love . when you can’t look down for 5/minutes it’s a game changer ,!

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So sorry that you’ve not got a supportive family to be beside you in this…we understand what you’re going through on here, thinking of you.

WOW, Tim! How hard! My family didn’t jump in w/ both feet to sympathize w/ my situation, but at least they didn’t deny it was a “real” problem & not just in my head. I’m very sorry for your lack of support & understanding. Your sister, of all people, should be interested in learning about new medical things, so I’m really surprised about her response to the education you tried to give her.

I had another thought about the prolotherapy that sort of aligns w/ what Snapple2020 said in a different post. It may be helpful for the short term, but only getting your styloids removed will cure ES. As you said, it’s the stylolid(s) grinding away on the nerves & sometimes vascular tissues that creates the awful symptoms. Nothing short of having the styloids removed will change that scenario.

Thanks :slight_smile: I appreciate you !

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Thanks ! I appreciate your advice and support:)

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Tim,

I am in the same boat. My whole family thinks I am anxious and depressed. They feel that if I stop and “don’t think about it so much” I’ll feel better. My wife told me to stop seeking out doctors or possible remedies. She thinks that’s what is making me the person I have become. I have become a good faker too. I don’t talk about it anymore because it makes people uncomfortable and I look like a complainer. I too have always been a positive outgoing spirited person who works hard and enjoys all that life offers. This condition has debilitating effects. I try to stay active but, I don’t enjoy things because of this affects my. I always feel it in my neck, face, throat and ear to some capacity.
I have tried to show them my scans and literature as well. They dismiss it.

How are you in your search for a cure? How did your appointment go seeking surgery?

Also, I have not even been diagnosed. CT scan says slightly elongated styloids and partially calcified ligaments. CT scan converted to 3D shows that, yet no doctor will say that this is what is causing my symptoms. Not even say “most likely” causing my symptoms. Sorry for the rant, but I’m exasperated.

Taylor

Taylor- technically the definition of ES is elongated styloid processes, &/or calcified stylo-hyoid ligaments, which cause symptoms, so I’m not sure why the doctors won’t give you a diagnosis. It’s understandable that they won’t commit to saying that there would be improvements with surgery, as no doctor will promise this, but they could still say ES is likely…
So sorry to read that your family aren’t supportive, sadly quite a few members experience this, I hope it helps a bit that we understand how you feel & that you’re not alone…

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My symptoms are real, real enough for me to resign from my new job this morning. I have only been there for 4 days working on a reception desk so there is a lot of talking and it’s like it’s flared up all the ear and jaw pain. I’m sorry that not everyone in your life understands how much these symptoms can effect you.

@Hally,

I’m so sorry that your symptoms have caused you to quit a new job. That’s rough! I have sent you the link for the doctors’ list by PM & hopefully there will be someone on there whom you can see. Getting a solid diagnosis can be quite the challenge but it sounds like you’re well on your way. Hopefully that will come soon then you can proceed with the next steps & decide if surgery is for you at this time.

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Thank you :blush: