As my surgery date approaches, I am starting to question whether or not I should have it. I have extreme jaw pain, ear ringing, sensation of something stuck in my throat, pain when I talk, BUT no problem swallowing. It seems that so many people talk about swallowing problems and I wonder if I am the only one with ES that does not have this symptom. Please share your thoughts.
It's a tough call, to have or not. Pros or cons.. Will the end result be worth it?
For myself, my tmj specialist, that I have been seeing for over four yrs. now, feels this styloid process hinders the ability for the jaw muscle to be flexible. It just remains so tight. If there's even a smidgeon of a chance the surgery will help, I'll do it.
My long yrs. w/my specialist have cost $1000s of $$$, gas, time off work, 150 miles rt each time.
I am sure you will make the decision that is best for you.
Hi.
I had no problem swallowing but others uncomfortable there were so many that I chose to take out the styloids last year. The important thing is to define the general state of discomfort.
Good luck.
Thanks for your reply. How were your results from having the styloids removed? Which procedure did you have?
Brazilian said:
Hi.
I had no problem swallowing but others uncomfortable there were so many that I chose to take out the styloids last year. The important thing is to define the general state of discomfort.
Good luck.
Hi Lola,
Initially I didn't have swallowing trouble but did have intermittent, really annoying neck, ear, jaw, & heachache/skull pain. I eventually began having symptoms that pointed toward vascular involvement (my blood pressure would drop very low when I did aerobic exercise). My ENT/surgeon removed my right styloid which was potentially causing the vascular problem, leaving me with the left & longer styloid for later removal. It's been 6 months, & I'm scheduled for my second surgery. My left styloid is now pressing on a nerve that manages tongue function, so I have a bit of trouble talking & eating (doesn't seem to hamper my food intake however ;), my neck, ear, jaw, throat & skull are intermittently painful from the remaining styloid. Though I'm not debilitated by the pain, removal/shortening of the second styloid is imperative in my book as the pain does affect my quality of life. The first surgery was very successful as far as stopping the blood pressure drop problems, & I'm very much looking forward to the second one so I can return to a more "normal" style of life. I am an advocate of surgery because I have seen such positive results myself & there are many others on this site who have too.
All that said, as Brazilian noted, you have to decide if your pain is bad enough to warrant surgery. It sounds to me like surgery would be a good option for you. One of my favorite sayings is "Nothing ventured, nothing gained". I'm not a great risk taker, but this surgery was one risk I was willing to dive into, & I'm glad I did.
Isaiah 40:31 and Brazilian:
Thanks so much for responding. I am hopeful that the surgery will be successful and take the pain away. Your responses are both so helpful.
Isaiah 40:31 said:
Hi Lola,
Initially I didn't have swallowing trouble but did have intermittent, really annoying neck, ear, jaw, & heachache/skull pain. I eventually began having symptoms that pointed toward vascular involvement (my blood pressure would drop very low when I did aerobic exercise). My ENT/surgeon removed my right styloid which was potentially causing the vascular problem, leaving me with the left & longer styloid for later removal. It's been 6 months, & I'm scheduled for my second surgery. My left styloid is now pressing on a nerve that manages tongue function, so I have a bit of trouble talking & eating (doesn't seem to hamper my food intake however ;), my neck, ear, jaw, throat & skull are intermittently painful from the remaining styloid. Though I'm not debilitated by the pain, removal/shortening of the second styloid is imperative in my book as the pain does affect my quality of life. The first surgery was very successful as far as stopping the blood pressure drop problems, & I'm very much looking forward to the second one so I can return to a more "normal" style of life. I am an advocate of surgery because I have seen such positive results myself & there are many others on this site who have too.
All that said, as Brazilian noted, you have to decide if your pain is bad enough to warrant surgery. It sounds to me like surgery would be a good option for you. One of my favorite sayings is "Nothing ventured, nothing gained". I'm not a great risk taker, but this surgery was one risk I was willing to dive into, & I'm glad I did.
I don't have a problem swallowing- only occasionally have I felt a sort of cramp across my throat. My symptoms are jaw pain, earache, and more recently symptoms of intracranial hypertension, which are quite scary and caused by the styloids pressing on the jugular veins. This was definitely the deciding factor for me having surgery, which I'm 'looking forward to' as it were next week. I'm also very sleepy when the IH is worse- this morning I had to go back to bed again for another sleep!
Everyone is different, but I would say that pain is often a deciding factor for people. If your pain is affecting your job- I find talking for long makes my symptoms worse, like you, and especially if you're having to raise your voice a bit to talk to your class- then I would think that it would make the decision easier. Like you, I've had some wobbles over my decision though- last week wasn't so bad, so I thought was I doing the right thing?, but this week is worse again, so I feel I need this operation SOON!
Good luck if you go ahead!
I also notice worsened symptoms when I talk for a long time & singing really aggravates things.
Jules said:
I don't have a problem swallowing- only occasionally have I felt a sort of cramp across my throat. My symptoms are jaw pain, earache, and more recently symptoms of intracranial hypertension, which are quite scary and caused by the styloids pressing on the jugular veins. This was definitely the deciding factor for me having surgery, which I'm 'looking forward to' as it were next week. I'm also very sleepy when the IH is worse- this morning I had to go back to bed again for another sleep!
Everyone is different, but I would say that pain is often a deciding factor for people. If your pain is affecting your job- I find talking for long makes my symptoms worse, like you, and especially if you're having to raise your voice a bit to talk to your class- then I would think that it would make the decision easier. Like you, I've had some wobbles over my decision though- last week wasn't so bad, so I thought was I doing the right thing?, but this week is worse again, so I feel I need this operation SOON!
Good luck if you go ahead!
Hello Lola.
I took out the 2 styloids in the same operation and was externally. I didn't feel a lot of pain in the days following the operation. The result of the operation was very good. Practically all bad sensations disappeared. However, I know that many people can live well with the ES. Especially when they don't have the styloids too long.
Lola said:
Thanks for your reply. How were your results from having the styloids removed? Which procedure did you have?
Brazilian said:Hi.
I had no problem swallowing but others uncomfortable there were so many that I chose to take out the styloids last year. The important thing is to define the general state of discomfort.
Good luck.
Jules,
Yes, teaching is definitely a struggle and YES some days are worse than others. I often wake up and say "Oh today is fine.", but by 2:00 pm, I am in tears from the pain. Surgery is going to happen.
Isaiah 40:31 said:
I also notice worsened symptoms when I talk for a long time & singing really aggravates things.
Jules said:I don't have a problem swallowing- only occasionally have I felt a sort of cramp across my throat. My symptoms are jaw pain, earache, and more recently symptoms of intracranial hypertension, which are quite scary and caused by the styloids pressing on the jugular veins. This was definitely the deciding factor for me having surgery, which I'm 'looking forward to' as it were next week. I'm also very sleepy when the IH is worse- this morning I had to go back to bed again for another sleep!
Everyone is different, but I would say that pain is often a deciding factor for people. If your pain is affecting your job- I find talking for long makes my symptoms worse, like you, and especially if you're having to raise your voice a bit to talk to your class- then I would think that it would make the decision easier. Like you, I've had some wobbles over my decision though- last week wasn't so bad, so I thought was I doing the right thing?, but this week is worse again, so I feel I need this operation SOON!
Good luck if you go ahead!
Lola -
You won't regret having the surgery! Listen to your body post op & don't push yourself. Take your pain meds for the first 2 weeks according to the schedule your doctor gives you. I didn't & had a few miserable days.
Lola said:
Jules,
Yes, teaching is definitely a struggle and YES some days are worse than others. I often wake up and say "Oh today is fine.", but by 2:00 pm, I am in tears from the pain. Surgery is going to happen.
Isaiah 40:31 said:I also notice worsened symptoms when I talk for a long time & singing really aggravates things.
Jules said:I don't have a problem swallowing- only occasionally have I felt a sort of cramp across my throat. My symptoms are jaw pain, earache, and more recently symptoms of intracranial hypertension, which are quite scary and caused by the styloids pressing on the jugular veins. This was definitely the deciding factor for me having surgery, which I'm 'looking forward to' as it were next week. I'm also very sleepy when the IH is worse- this morning I had to go back to bed again for another sleep!
Everyone is different, but I would say that pain is often a deciding factor for people. If your pain is affecting your job- I find talking for long makes my symptoms worse, like you, and especially if you're having to raise your voice a bit to talk to your class- then I would think that it would make the decision easier. Like you, I've had some wobbles over my decision though- last week wasn't so bad, so I thought was I doing the right thing?, but this week is worse again, so I feel I need this operation SOON!
Good luck if you go ahead!
I didn’t have swallowing issues at first! But as the years went on and I kept pushing the surgery off’ My swallowing started acting up little by little. Now it’s terrible! Ask yourself do you trust your doctor? I bet I met about 12 whack jobs that wanted to operate on me. Just to say they did a eagles syndrome surgery! And got turned away by many ent’s because’ they didn’t feel comfortable doing it! So I finally found a skilled base skull head and neck surgeon’ for which I feel very comfortable with and know that he is out for my best outcome! That is what you need to question? Because if you feel unsure or uncomfortable? I wouldn’t go through it! Until I positively felt confident! Pray write it down talk with a friend or another physician? Best of luck! And Godspeed on your healing journey!
Sincerely’ Dee
Hi Isaiah,
I have really similar symptoms to yours, CONSTANT neck, shoulder, head/skull/pressure points pain. Getting worse too. And I have dreadful issues with exercise/dizziness/low blood pressure ... I thought it was just my blood pressure issues and never thought of it being connected to my ES!! Which was only diagnosed in December. I have major issues when doing pilates, or any exercise, if I have been exercising on the floor it takes me minutes to be able to get up. On my right side (the problem side) it's 1.9mm, which I don't think is very long? But I really think it's causing most of my pain.
Did you have yours removed internally or externally? How long was it?
I'm in Singapore and of course the next issue is trying to find someone here who knows about it! The guy who diagnosed me did it very quickly and so he might end up my best bet because at least he was super familiar with it.
Thanks so much,
Trish
Isaiah 40:31 said:
Hi Lola,
Initially I didn't have swallowing trouble but did have intermittent, really annoying neck, ear, jaw, & heachache/skull pain. I eventually began having symptoms that pointed toward vascular involvement (my blood pressure would drop very low when I did aerobic exercise). My ENT/surgeon removed my right styloid which was potentially causing the vascular problem, leaving me with the left & longer styloid for later removal. It's been 6 months, & I'm scheduled for my second surgery. My left styloid is now pressing on a nerve that manages tongue function, so I have a bit of trouble talking & eating (doesn't seem to hamper my food intake however ;), my neck, ear, jaw, throat & skull are intermittently painful from the remaining styloid. Though I'm not debilitated by the pain, removal/shortening of the second styloid is imperative in my book as the pain does affect my quality of life. The first surgery was very successful as far as stopping the blood pressure drop problems, & I'm very much looking forward to the second one so I can return to a more "normal" style of life. I am an advocate of surgery because I have seen such positive results myself & there are many others on this site who have too.
All that said, as Brazilian noted, you have to decide if your pain is bad enough to warrant surgery. It sounds to me like surgery would be a good option for you. One of my favorite sayings is "Nothing ventured, nothing gained". I'm not a great risk taker, but this surgery was one risk I was willing to dive into, & I'm glad I did.
Hi Trish,
I am so sorry to hear you're having these troubles w/ exercise. It was a bit scary when it happened. I ran (walk jogged) a 15K race about 6 weeks after surgery & had a little bit of the blood pressure drop sensation but have had nothing since then & I'm 6 months out from surgery now. I do believe that problem went away w/ the styloid. II don't think it's the length of the styloid that is as important as the angle it grows & what it's poking inside of you that determines your symptoms. I had my right styloid removed externally & will have my left one done that way as well on 5/11/15. I don't know how long my right side was but my ENT said he was only able to remove 1 inch (2.54 cm) of the styloid because the nerve that controls the motor part of the right side of my tongue was tightly wrapped around it, & he didn't want to damage the nerve. My right styloid was growing sort of straight down, & I suspect was poking either my carotid artery, vagus nerve or jugular vein or all three when I did vigorous exercise. My left styloid has curved in behind my tongue & into my throat on the left side. The right one gave me the blood pressure symptoms but not much pain. It's my remaining styloid that is causing the neck, throat, ear, head, jaw, etc. pain & some periodic dizziness which is a different feeling than the blood pressure drop feeling. I'm counting the days till it's removed.
Don't know if this will help you at all, but here's the link for the International Doctors Spreadsheet that Emma, Christian22 & Heidemt put together. If you'll be traveling back to Australia to visit family, maybe you could see someone there:
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I also do pilates & have no trouble now. Try to find workouts you can do that don't exacerbate your problems, even if you have to scale back a bit till you can have your styloid shortened. I did find that if I took it easy & didn't exercise hard I had less problems than when I did a vigorous aerobic workout.
I will keep you in my prayers as you seek solutions to this problem & for your other styloid symptoms as well!
Isaiah 40:31
Thanks so much Isaiah, you are such a helpful member of this community! I spoke to my dentist about my ES last week as he knows a bit about it and he was able to show me more about it on using a skull skeleton he has, so that was helpful. He has referred me to an oral surgeon here, largely because I want a 3D scan so I can see where it is and what it's digging into. He was relatively dismissive of what problems it may be causing as the CT scan measures it at 1.9mm and that's quite short, but thanks to this site I knew to be more demanding and follow my own instincts, because there is no doubt in my mind it's causing a lot of pain and discomfort that I have become so used to being there I barely feel it, only the effects from it (neck and head aches, shoulder pain, lots of throat pain and the dizziness ... a new idea/possible connection for me, thanks to your sharing!).
So I will go and see the surgeon asap and have the scan and take it from there. I'm leaning more and more towards strongly exploring the surgery option though, as I'm fed up with living with all the things I think it's causing. Plus it's getting worse, I'm sure.
Thanks again for your support and for the effort you put into caring for others, it's wonderfully appreciated by me and many many others, I'm sure.
Warmest regards,
Trish
Hi Trish,
So glad God has allowed my experience with this syndrome to provide useful information to others who are struggling. I must say that things have changed a bit for me this week & my second surgery is now postponed for 3-4 months. :(
I fell while riding my bike on Tues. & got lots of road rash & a concussion & maybe tore something in my right shoulder. My ENT wants to make sure I'm totally healed before he operates again. I'm a bit frustrated with myself for not being more careful, but in retrospect, who ever plans for a bike crash when riding?!? I'm very thankful that my bike helmet saved me from what could have been far more serious head injuries & that no bones seem to be broken. My injuries could have been substantially worse. God graciously designed our bodies to heal when they get hurt so working on healing is what I'm doing now. :)
I will keep praying for you.
Hug to you,
Isaiah 40:31
Oh my goodness Isaiah, so sorry to hear that!!! Thankfully indeed that you were wearing your helmet. May you heal very quickly and no more crashes in future!
(gentle) hugs back!
Trish
Isaiah 40:31 said:
Hi Trish,
So glad God has allowed my experience with this syndrome to provide useful information to others who are struggling. I must say that things have changed a bit for me this week & my second surgery is now postponed for 3-4 months. :(
I fell while riding my bike on Tues. & got lots of road rash & a concussion & maybe tore something in my right shoulder. My ENT wants to make sure I'm totally healed before he operates again. I'm a bit frustrated with myself for not being more careful, but in retrospect, who ever plans for a bike crash when riding?!? I'm very thankful that my bike helmet saved me from what could have been far more serious head injuries & that no bones seem to be broken. My injuries could have been substantially worse. God graciously designed our bodies to heal when they get hurt so working on healing is what I'm doing now. :)
I will keep praying for you.
Hug to you,
Isaiah 40:31
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