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Eagle Syndrome - Online Support Group

It’s Just Stress

I figured this would be a good place to post my entire story because it is one of frustration like so many of you.

At the end of April 2018 I started with a stuck in the throat feeling. I went to my allergist the week before because I woke up one day with a completely swollen throat and uvula and the walk-in dr thought it was an allergy. Allergist wrote it off as seasonal allergies and sent me on my way. I couldn’t get into my PC until the next week. When I feel helpless I start researching things. This is good but also bad because I swear you could type in “paper cut” and somehow it would be connected to some horrible thing such as cancer. I came up with acid reflux or thyroid.

I went to my PC and when I explained what happened and that I had seen my allergist she said “I normally would send you to an allergist but you’ve already gone” and then said absolutely nothing else about what it could be. So I brought up the two ideas I had and she said it could be either and sent me for and ultrasound and prescribed a PPI. After the ultrasound (thyroid was normal) I had pain and then started gagging and wound up at the ER.

ER Dr. didn’t know what to do with me but suggested an ENT. One was suggested to me but it was going to be 3 months to get in to see him so I went to another in the group. He said it was acid reflux and upped my PPI (that I didn’t earlier from my PC take because why am I taking meds for something you don’t know for sure I have :woman_facepalming:t2:) so I start taking it. Had the inside of my throat swell up and went back to ER. This Dr thinks I have esophaguses and that’s why I can’t eat anything and even when I tell her it feels like it swells even more every time I attempt to drink water she sends me home with a narcotic. After a completely miserable weekend and lots of prayer I think to stop the PPI. Yep allergic. Swelling goes down but I teach school so I have to talk. I have a pop in my throat and am back to gagging and back to the ER.

Go see GI he scopes me and I wake up from the procedure and the first thing I’m told is that I was dilated as far as he could until I bleed. I had a very small case of esophaguses. But I should be able to eat now…I couldn’t.

My anxiety is off the charts I got back and forth between ENT and GI and various test. The worst was the esophageal mobility test. And am basically told it is just the acid reflux and my stress and the only other thing it could be was spasms in my throat that I was causing because of my anxiety.

I had to quit my job because of all the strange symptoms I was having.

Was also told I should see an OBGYN because “woman and your age and anxiety” all my hormones tested normal but I got a nice side trip to removed polyps.

I had been in a liquid diet at this point for over 2 months and lost 60 lbs. I attempted to eat food and got horribly sick. Bloated so much I popped ribs out of place among other issues, back to ER. My numbers for my pancreases concern my Dr and she wants to keep me because I might have pancreatitis. I have an appointment with my GI so she lets me go. GI refuses to see me when I show up for my appointment because as it is whispered to the front staff but I hear it, “they had to deal with me to much.” Come to find out (on my own) I now had issues with gluten and sugar.

I started to get better but was still having episodes with my throat. Started seeing a new PC and new ENT…THEY BOTH LISTENED TO ME! :open_mouth::blush:

Ended up having my tonsils removed a few months ago along with a big abscess. 3 week after surgery I had more trouble with my throat and the strange symptoms I had before were back and worse. It looked like I had Hashimotos. Just went last week for bloodwork and CT. My ENT called and talked to me himself yesterday and said I had Eagles Syndrome and he didn’t do this surgery but another ENT in the group does. I will see him Friday to see if he will do surgery. Praying he will.

I fell apart for a while but got it together to start to educate myself. Then I found this group. I feel so much better now. At first I was devastated because I thought I had this and Hashimotos and the endo won’t see me because I test “normal” and on top of that now another surgery. But after all the symptoms I read here I’m almost positive it is all ES! I am much calmer about possibly having my 3rd surgery this year and maybe getting my life back. Thank you all!!! And I only shared everything because I hope it helps some of you who have also had bad experiences with Drs. I felt like it was my fault and I had done something wrong to be treated that way. After finding good caring drs who would listen and try to dig I know it wasn’t my fault. Keep going to new ones until you find ones who fit!

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Hello! Welcome!!! What a story!

So you see the new ENT tomorrow? The best thing we can do for ourselves in this process is go to doctors with a CT scan result. Doesn’t sound like you have time for that. I scrambled to get my PCP to write an order for “CT scan of the neck” before I went to my appointment but I had like 3 weeks. I’m guessing this guy will want to see one so maybe today you can start calling around to find out where you would get it. A diagnostic center usually charges an “office visit” for one versus a hospital that will apply it toward your deductible. Just depending on your insurance, see which place would work better for you. A CT scan is extremely valuable in confirming ES and doctors usually won’t operate without it.

Can’t wait to hear more details about your journey!!!

Thank you so much for the info. My current ENT did a CT scan and that’s how we found it. He said the tech even circled it and that was unusual for him to see a scan were the tech noticed it. Unfortunately he doesn’t do this surgery. I say unfortunately because I know and like him, but part of that is because he is willing to admit that something is outside his area and find me someone who can help.

He is sending me to someone in the same group that does have access to all my records including the CT. I also have a CD of it I got from the diagnostic place just in case.

I am comforted by the fact that when my ENT told me what I had and I asked about treatment and if it was surgery he said yes he didn’t do it but he knew someone who did. So it at least sounds like they are all aware of this condition and that this person has done this surgery before. He is the doctor in the group they send all their cancer patients to for surgery so I’m feeling good right now but very nervous. My ENT said my new doctor is very conservative. Usually I would like that in a surgeon but in this case I don’t know what that means and have so many symptoms I don’t want to be told he won’t do it.

Ok you’re on your way. Let’s see what this guy says tomorrow. It’s important that you feel like the person is a “fit” - I get that, I’ve been there and changed doctors until I found the right one! There should be someone in your area even if you have to drive a little. Let’s have hope for Friday.

So glad that you were able to find good doctors to help you, & sorry that it’s taken so long! I really hope that the ENT tomorrow is able to help, but if as this other doctor says he’s conservative, be prepared that he may not want to operate. Or it could be that he’s just not gung-ho & wanting to slice everyone open! If he’s willing to do surgery, I would make sure that he removes as much as possible of the styloid process as possible (if they do external surgery then it’s easier to remove more, intraoral gives less visibility & room so less is usually removed. The more that’s removed the better the outcomes) If some of tge styloid process is left, then that needs to be removed too. Also if the stylohyoid ligaments are calcified, then they would need to be removed as well. You could also ask how many surgeries he’s done, & how successful they were , & if they monitor the nerves during surgery, which helps check if they’re under any stress.
If this doctor isn’t willing to do surgery, or you want a 2nd opinion, then have a look to see if there is a doctor on our list in the Doctors Info section.
Good luck & let us know how you get on!

Hi JDB ~

There are several doctors on this forum with LOTS of ES experience. If you don’t get a good reception tomorrow or are uncomfortable at all w/ the doctor, you can get a second opinion from one of the more experienced doctors via a phone appointment so you don’t have to travel to see them.

I will pray that all goes well for you tomorrow & you’ll be on your way to recovery before you know it!

:hugs: :relaxed:

Hi JDB
I’ m sorry for you that you have experience with dr who don 't listen and fine you a difficult patient. After a while you doubt yourself. Been these also. Know the feeling. But it’s them who don 't have enough knowledge.So glad you have found a good dr.
Dr have to listen and think further. I hope you can be helped soon and will be relieved. Hope and prayers for you.

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So here is the update on my appointment:

I went to see Dr. Wirtz in Shawnee Mission KS. I really liked him. He was nice and acted like he could spend all day with me. He listened to my symptoms and then talked to me about them and my CT. He doesn’t think it shows Eagles at all or that I have usual symptoms of it. He said it looked like they circled something else on the scan (I forgot what part he said). I have all of my symptoms at the base where my thyroid is located. I have no jaw or back of throat pain. And I haven’t tried it lately but last time chewing gum helped me.

He is going to send me to a swallow therapist and for a swallow test and move from there. I prayed ahead of time and felt very calm and relaxed about his decision.

I will do these test and see where I need to go from here.

Thank you all for the support and prayers. Guess my journey isn’t over.

Were you able to get a copy of your scan? It’s interesting to have a look? Sorry that you’re journey isn’t over yet; you say you felt comfortable with him, but the only thing I would say is that it’s not always the length of the styloids that causes symptoms, but the width & angle too, not all doctors look for that. So don’t rule out ES completely. Lots of members have had swallow tests done which don’t show anything, so again if it’s negative it won’t necessarily rule ES out.
Let us know how you get on, thinking of you…

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Hi JDB,

Since you have one doctor that says you have ES & another that says you don’t, a third opinion might be in order. So before the ES theory comes to a full halt, it would be good for you to get an opinion from one of the very experienced ES doctors on this forum - Drs. Samji, Cognetti or Milligan. I don’t think Dr. Milligan does phone consults, but Samji & Cognetti do.

If you do have a copy of your CT scan & are willing to post it, we can also give an “unprofessional” opinion here (since we’re not doctors). We would prefer a 3D image if possible. SnappleofDiscord posted a detailed description of how to convert CT slices into a 3D CT if there are no 3D slides included w/ yours.

I had a surgeon who published an article on ES tell me mine wasn’t ES. I left in a puddle. It was just not how he defined ES. I am a calcified ligament only person. He believes you have to have crazy long styloids. Found a surgeon two months later. I undoubtedly am an Eagle syndrome case. I like the idea of a 3rd opinion because the last thing you want is to be three years down the road or something and have to start over at square one. :-1:

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I had my 3rd opinion today and apparently I’ll get my 4th opinion soon. The VA sent my file to the medical center saying they have no idea what’s wrong with me.

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That’s likely because they aren’t versed in ES with its many bizarre & wide ranging symptoms that don’t add up…

I agree. Maybe I will give Dr. Day of UAMS a chance and check in with Louisiana doctor to see if he received my request for a records review. Still very hopeful, but confused how doctors missed this so long. How many people experience vascular ES?

Hi DeeG,
It seems there’s a fairly large percentage of our forum members who have vascular symptoms w/ ES diagnosis. Over the entire ES population, I don’t know what the percentage is. I didn’t initially have vascular symptoms that I was aware of, but prior to my second surgery, I began to have some when my head was in certain positions. this is one C-R-A-Z-Y :crazy_face: syndrome!!

Indeed it is! But at least now I know I’m not crazy or maybe I am, but not clinically crazy.

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:rofl: :rofl: I think we all feel that way at times!!

Hi guys I don’t know how to post a question on this website. Where do I go for that? Can someone please tell me?

When you’re on the main page do you see “new topic” with a plus sign next to it? It’s halfway down the screen.

Hi Cali,

Here’s a link to the main discussion page. The New Topic tab is on the right & down a little from the top as SewMomma noted:

https://www.livingwitheagle.org/latest