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Eagle Syndrome - Online Support Group

Hope Again

Thanks Jules, I am still waiting on an ENT referral, this particular ENT is familiar with ES and has done surgeries; it’s been 5 months since the referral was sent in, I’ve been told by his office 6-12 months to get a consult…still hope. I just booked an appt. with my family dr to get an updated 3D CT specifically looking at my SP’s, that’s towards the end of November. I will not give up, I cannot live the rest of my life like this, the last 4 1/2 years have been hell, I had all but convinced myself that I was actually crazy, thank goodness I found this forum, you’ve all confirmed I’m not. Thank you for all your support.

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I’m glad that you have that ENT appt. to work towards at least, hope it’s nearer the 6 months than 12! Maybe if the new scan shows any changes they can get you in earlier? I know that US members have asked to go on a cancellation list & got earlier appts that way- do they do that in Canada? And in the UK lots of consultants do private work outside of the free NHS, so if you pay for a consultation you can jump the queue a bit- is that a possibility? Here we can then still have the rest of the treatment on our NHS. Interestibg all the different systems…until yiu’re stuck in the middle of it!
Keep strong!

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Hi Weezie65!

Your story is tragic & unfortunately mirrors the journeys of many people on this forum. I’m so glad to read you have an appointment w/ a doctor who “has a clue”. We have had some recent members from Canada who’ve had successful ES surgeries, but I think they’ve all live further east than you are. If your next appointment doesn’t provide you with help & answers, please let us know & I’ll try to find some of those posts so I can give you the surgeon’s names (though they are probably already on the ES Doctors List for Countries outside the US.

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Thanks @Jules, I will continue to push on, it is frustrating, but I will not give up, I have considered the US but am hopeful on my ENT referral coming through sooner rather than later. :slightly_smiling_face:

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Hi @Isaiah_40_31, Yes, very frustrating, at the end of the day I’m hopeful I will get my ENT referral soon. I’ll update when I have more to share. Thanks for your support.

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Finally, after red tape and kidney function tests, I have a private CT scan with contrast scheduled for next week. They are looking specifically at my SP’s measurements and angle. Is there anything else I should be requesting them to look at in the scan? Any advice I can get to get as much info for the ENT is greatly appreciated. I desperately need a diagnosis and a path to resolution. Thanks everyone.:pray:

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Weezie65 ~

I’m so glad you finally have your CT appt scheduled! Please make sure they also check for any calcification on your stylohyoid ligaments. Sometimes there’s only a small amount in addition to elongated styloids & sometimes the styloids are fine & only the ligament(s) are calcified & sometimes the styloids are elongated & there is significant calcification of the ligaments as well. Checking both styloids & s-h ligaments is critical.

If they’re elongated, then if they could look at the angle & gap between the styloids & cervical bone processes too, there have been members with a narrowed gap, which can squeeze structures.

Thank you for your input, I appreciate it.

Thank you!

YAY! I finally have my new ENT referral appointment January 2020! I had my private CT scan done last week, I included all the advice I have received from @Isaiah_40_31 and @Jules in the CT requisition. Checked with the new ENT office and my file with scans and report are sitting on his desk for review, I have been given an appointment for January 21 and I am ecstatic to finally sit in front of a doctor that knows about ES. I want to take this opportunity to tell fellow ES sufferers, don’t ever give up, keep advocating for yourself, listen to others that have walked this journey; I am onto my 10th medical professional, 4 years 8 months later. My symptoms continue to worsen as time goes on, hopefully, I am only a month away from a diagnosis, I have hope again…never give up. Thank you for all the support, you have no idea how much it has meant to me when doctors and even family and friends looked at me as if I was a crazy person. Thank you @Diasy for never giving up and finding Dr. Dan O’Connell in Edmonton, you have pointed many others in the direction of relief! Wishing you and yours a Merry Christmas and a Happy New Year!

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Hi Weezie65
I haven’t posted in a while…been trying to catch up on everything this afternoon and ran across your post! So glad you finally have an appointment to look forward to. I will be anxious to hear how your appoint goes come the end of January. Despite experiencing symptoms for many many years and having seen doctor after doctor, dentist after dentist, I was only diagnosed in April of 2018. A 3-D dental panaramic xray told the tale. Since then I have seen a couple of so called ENTs interested and/or experienced with ES only to find out they really aren’t all that. I am currently recovering from cervical spine fusion surgery and plan to address the ES again when I am fully recovered from that. I’ve been on that crazy train too as have most of us here. Ups and downs are part of this journey…but knowing what you are dealing with and feeling hopeful again is everything. People here are amazing and I am so happy you have found much needed comfort to carry you through this! Cheers to you and yours and I have a feeling 2020 is going to be a very good year! :heart:

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Thank you @kiZe6159, all the best to you and yours!

Weezie,

That is wonderful news! I will be praying for a productive appointment that starts the wheels in motion for resolution to ES for you!! Hope is a wonderful Christmas gift!

I wish you a very Merry Christmas & blessed New Year which includes healing from ES pain & symptoms.

:heart:

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Thank you :pray:

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kiZe6159 -

I bet you do have some catching up to do after the major surgery you just had. We’ve missed you on here. I hope your recovery is going well & you’re able to take the next step & deal w/ ES earlier than later in 2020. I agree, 2020 will be a very good year & am praying it also sees an end to ES symptoms for you.

:hugs:

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Not long now! I hope he’s helpful after that long wait, you’re on my prayer list!

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Hi everyone, I’m less than a week away from my new ENT appointment, I’m terrified I’m going to get another brush off and the “I can’t help you” speech. I now have my radiologist report from my private CT, I apologize in advance for the length but would like your opinions on the following report, which I fear may not bode well for an ES diagnosis for me: “The right styloid process measures approx. 3.0 cm in length. The left styloid process measures approx. 2.9 cm in length. They both measure approx. 4mm in thickness at their bases and taper gradually inferiorly. On axial images the gap between the right styloid process and the right C1 transverse process measures 6mm and the gap between the left styloid process and left C1 transverse process measures 5mm. There is unchanged mild flattening of both internal jugular veins. No mass effect on carotid arteries. There is no calcification of the stylohyid ligaments. Using similar anatomic landmarks, these measurements are unchanged from March 2017. No discrete mass in upper aerodigestive tract. Incidental bilateral palatine tonsilloliths…(theres more but I think this paints the picture) IMPRESSION: Borderline mildly elongated bilateral styloid processes. This can be seen in normal asymptomatic patients. Eagle Syndrome should only be considered in the appropriate clinical setting.”

I have had symptoms since 2015, 4.5+ years 10 doctors, dentist etc. trying to get a diagnosis, all my previous CT’s/MRI’s focused on other areas (TMJ’s etc) so no specific comments about my sp’s, no previous mention of palatine tonsilloliths on reports from previous scans. My pain and symptoms continue to get worse as time goes on I am essentially housebound now, and desperate for a resolution. Nothing seems to take the pain and head pressure away, my dizziness and balance are really bad, I just feel terrible all the time. Your thoughts on the radiologist report would be appreciated. Thanks.

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The report does say that the styloids are mildly elongated, not sure what they mean that it ‘should only be considered in the appropriate clinical setting’- the definition of ES is elongated styloid processes causing symptoms, so it does fit, but unfortunately there are alot of more conservative doctors who wouldn’t consider those lengths elongated enough. There are research papers which mention the ‘average’ lengths, & also the angle of the SPs. The slight flattening of the jugular veins is interesting- not sure if that’s enough to cause symptoms. Onelessstyloid & JustBreathe have posted links to research papers recently about jugular compression, I think there was mention about angles & gaps between the SPs & cervival vertebral processes. I’ll see if I can find them.
I hope that your appt. does go well , I will be praying for you…

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Hi Weezie65,

I’m in Jules’ camp. Your styloids are elongated even if only slightly. I find the slight flattening of the jugular veins to be a little alarming as in my book that implies some compression which could be the cause of the vascular symptoms you’re having. Additionally, there have been several forum members who’ve been diagnosed w/ styloids of one length & after surgery were found to have much longer styloids than seem to appear on the CT scan so there’s that to consider as well.

As Jules mentioned, styloid angle can play a significant role in producing symptoms as well as thickness & how pointed or twisted the styloids are. It is good that you have no ligament calcification.

You can use the magnifying glass icon to search for the research articles that Jules mentioned. Type in onelessstyloid or JustBreathe in the search box & a list of posts will come up. It should be relatively easy to find the research links.

I will also pray that you will be received well by the new ENT.

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