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Eagle Syndrome - Online Support Group

My Eagles Journey

I had pulsatile tinnitus, which is where you hear your pulse in your ear as a whooshing noise, & it was because of vascular ES. Is that what you have?The jugular veins were compressed so the pressure inside my head increased. It’s a lot better since surgery, only get it occasionally.
There’s a website with more info & also about other possible causes:
http://www.whooshers.com/
Unfortunately stress makes it worse, bad news for you…
I was so lucky that the UK consultant I saw had a special interest in this & was doing research about it.
Do you sleep propped up? That really helped me, I used a wedge pillow, & a V shaped one as well.
If you have got vascular ES, brain fog can also be caused by that, and dizziness.
Sending you a hug & thinking of you…

I have first surgery consult Monday, December 2nd. Hope it’s fast track from there, but I’ll be patient. My journey was longer because of military hospitals in 3 states, military clinics in 5 states, VA hospitals, at least 25 doctors and civilian hospitals in 3 states. So my symptoms could have easily and we’re easily misdiagnosed at least a dozen times. Long journey, but hopefully 2020 starts the end of my symptomatic stage. Your journey and other similar journeys have given me months of hope tempered with realistic expectations. I’m hoping I’ll feel 50% or better improvement in one year.

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Hi jlink,

I’m so sorry to read about the lack of support you’re experiencing from family & friends. Unfortunately, there are many members here who have suffered the same consequences. It’s truly astounding how quickly people we thought were our friends bail out when we are in a period of true need.

Have you asked the ENT who diagnosed you for a referral to a surgeon who could possibly help you? (Sorry if this sounds like a stupid question). It’s a shame so many ENTs are able/willing to diagnose ES but not help take care of it.

I don’t want to sound hard-hearted, but if you don’t take care of yourself, there will be no one to take care of your children down the road. You are in a tough spot, but perhaps something needs to be put on hold for them so you can focus on getting your ES taken care of. You can’t keep living like you are. You can talk to your PCP about getting a nerve pain med Rx to help you deal with your pain until you are able to think more seriously about ES surgery. Some people have found temporary relief by getting an ultrasound guided injection of lidocaine & cortisone into the neck.

If you have a CT scan and radiology report that show you have ES, try to find an ENT who is a throat cancer specialist in your area. These are the doctors who most often operate in the area of the neck where the styloids are. Based on your post, I’m guessing you’ve contacted the two doctors in your state who are on the list & not had good results. Many doctors offices will work with you when finances are tight especially if you don’t have health insurance so that’s something to consider as well if the it’s the cost that’s holding you back.

I want your children to have their mom back as well. Please keep pressing forward as you’re able. There is bound to be someone in your state who can help you.

Happy Thanksgiving tomorrow. I hope you’re able to enjoy it in some measure.

:heart: :rose:

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@Jules. Hi jules. Happy thanksgiving! So my heartbeat in ear never went away with surgery. I got pregnant right after surgery n towards the end kf pregnancy the heartbeat was very faint. But after i delivered its back strong as day 1. So i really think this has something to do with veins and blood flow. I had an ultrasound on neck before n after surgery. Before surgery the left side jugular was compressed. After surgery it looks like everything is all clear. They said everything looked normal n told me to go to an ent to find out why its happening and has nothing to do with veins. I find it hard to believe that its nothing to do with veins. I want to go back to the gym n start spinning again so im just nervous if there was damage to the vein hopefully i dont drop dead. I made an apt with an ENT off the list in my state who handles eagles but doesnt do the surgery. But since i already had the surgery im just wondering if he has some insite on this heartbeat or atleast tell me exactly whats causing it. Since the bone is gone. Something must have been damaged no? Idk i made jt through deliving my baby. Hopefully i dont drop dead if i excersize. :frowning: ugh. Ill see what he says.

Cupcake5 -
It’s unlikely you’ll drop dead from exercising especially if you delivered your baby vaginally. The pressure from the pushing required to do that far exceeds any pressure you’ll put on your heart & veins during exercise. I would expect you’d have other symptoms that would warn you something is up first, like light-headedness, heart palpitations or something else obvious. Having a blood vessel spontaneously rupture is very rare. They are made to last for our whole lives. :relaxed:

I think the follow-up with the ENT is a good idea. I’m glad you’re doing that.

:hugs:

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I still get it occasionally; quite often if I’m stressed, I presume from the increased blood pressure! And after I’d flown. After my surgery the consultant said if the veins didn’t spring back, then stenting might be possible (I’m a bit older thsn you, so probably less springy than you😂). But he said that the stents can be painful, & can’t be removed, so it wasn’t something I’d consider, I’m feeling so much better anyway. It may be the veins aren’t fully back to how they were, but as Isaiah says, you shouldn’t need to worry if you’ve carried a baby!
It can happen with no known cause, so try not to get anxious & enjoy your little one! :bouquet:

Hi everyone. Just wanted to put in an update. So i went to dr eaton chen in CT who is on the eagles list to follow up on heartbeat in ear remaining after surgery. If there is anyway to update the drs list ive seen all the CT drs and none of them actually handle eagles. They dont do the surgerys nor are they informed at all. He told me none of my symptoms were eagles n i said yes they r n most all of them were resolved with surgery. And he didnt say anything. N he said the heartbear in ear just happens n he couldnt help me. Its an unknown cause in many patients (with or without eagles). Which i am not happy with that answer. He said he couldnt help me at all. He said i could get an MRA with contrast of veins but i cant while breastfeeding. But i already had an ultrasound on neck n i do not feel this dr has any insite enough on eagles to even go back to him since he said flat out he couldnt help me. I dont think ill proceed with that scan. I really wish drs had better knowledge of this. Its very upsetting. Us patients here have more knowledge then drs. I went to the gym today for first time. I did 10minutes of stair climb slow. N jogged for .4 mile. My heart rate was 170 on the machines. It seemed high to me. I got scared n then i went home. :frowning:

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Hi Cupcake5,

I’m so sorry to hear about the downer your appointment turned out to be. We can remove him from the doctors’ list or at least make a note after his name. He wouldn’t be on there if someone from the forum hadn’t recommended him, but I’ll look to see if I can find out how long ago his name came up & what was said.

As far as your exercise goes, a heart rate of 170 during aerobic exercise would be acceptable for someone your age. If you weren’t light-headed, overly winded, or having heart palpitations, you are probably fine at that heart rate elevation. Remember you haven’t exercised in quite awhile so your heart is not accustomed to that kind of workout at the moment. It has to get reacquainted w/ aerobic exercise, thus, initially it will elevate faster & maybe even to a higher level than it will after a few weeks of doing the same type of workout. I think what you did today was a good start & I’d try to repeat that same level of workout 3-4 days a week for 2-3 weeks then gradually increase the time & distance you’re exercising.

:heart:

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@Isaiah_40_31 thank u. Thankyou. Will do!:two_hearts:

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Im up with the baby its 3am LOL. Just looked at the eagles list looks like its been updated since i last looked a while back. I just want to say it looks like samji and cognetti are the only 2 with a lot of successful surgeries. This just makes me sad that there are only 2 people in the whole US who can help with this. I dont really understand why theres not more. :cry: and how come samji n cognetti cannot show their partners or more surgeons how to do this? Idk. Just sad. I wish there was more help out there.

When i was first diagnosed by a dentist. I looked it up on google n it says eagle syndrome can be cured by surgery. Like it was so simple. It didnt tell you…good luck finding help with this. Smh.

There are other doctors who have done lots of successful surgeries; Dr Milligan in Arizona, Dr Nuss in Louisiana, Dr Newman in Pa, Dr Eric Lentsch in S Carolina, Dr Pramod Sharma in Utah,…there have been a couple of members who’ve had robotic surgery so that’s a new development, things are improving! It’s in Australia & Canada that things don’t seem to be moving on…

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@Jules aw thats awesome. So glad to hear this!!! Hopefully we can raise some awareness :two_hearts:

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I have a surgery next week to take one out and I have been having breathing problems to, I have always had mild asthma problems when I get an infection but never just like all the time. I feel like I can’t breath and I went to an asthma doc and did A breathing test, he said it was good but gave me albuterol and tested again and my points went up by 3 and so he gave me an asthma daily inhaler and told me to take it once a day and said I have mild asthma. But I usually feel decent in the morning and the more I do, talk, move, etc. the worse it gets and it feels like I can’t breath and I get tired. I don’t know if my asthma is acting up that bad or it’s my eagles. I Am hoping I have what symptoms u are having.

When I had my first surgery my shortness of breath completely disappeared. I don’t have asthma, but couldn’t climb a set of stairs without stopping to catch my breath. That part is gone. They did a complete pulminary and could find no issues when i was having problems. Unfortunately, the severe pain remains. I still have the right side which is 4.5 cm. Dr is reluctant to remove this as he believes the first surgery on the left side should have solved the pain problem also. Pain is in the center on the lower back side of my tongue. I’d welcome any opinions on this. I think he is wrong.

Oh wow! I think he is very wrong. My ENT is doing both. As long as I want both gone. I would def. go see a different doc for sure. Look on that list cause That’s where I found my doc. And I don’t have the typical symptoms of eagles at all.

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Mark,

I totally agree w/ peanut929. I believe you are headed to another doctor sometime soon, correct?

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Hi everyone. Just wanted to post a quick update. Im 1 year 3 months post op from my surgeries. I do have some symptoms that pop up like eye pain, tingling in face or spams in face. When they come i panic worrying that ES has come back but then they just as quickly fade away and ill feel better. My stomach is my biggest battle. With 2 GI drs unable to help i finally went to the naturopath dr. Who is trying to help. He did some blood work. He believes i have SIBO from nerve issues caused by ES. So i have a bacterial imbalance. Toxins r in my blood and causing my liver to work overtime bc my stomach/intestines are not irradicating toxins well enough. So trying a course of new vitamins n new probiotics. The die off is difficult when the bad bacteria dies off i get sick. I have had some “good stomach days” since surgery but then they go bad again quickly so trying this. The naturopath wants to try to get the toxins out so ill be retesting in 2 months for the toxins and my liver. :smirk:.

I did have a recent densist apt n asked to check styloids on xray for the hell of it. But my insurance only covers a pano xray every 5 years so i couldnt get one. Good luck everyone. Keep trying to get better xo

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Hope the new treatment works & gets your stomach sorted…hope you have a lovely Christmas with your little one!

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