Playing for team Eagles again

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Back on team Eagles today. I’m the blonde in the back row second from left and today, almost 40 years later, I’ve managed to solidify the diagnosis of Eagles via CT results:

I ended up going non-contrast because it is what Dr. Samji prefers from communication with his secretary. I’ve big time jugular compression symptoms as well as glossopharyngeal, vagus and facial nerve symptoms. It would have been interesting to document the anatomic details, but then again I guess it doesn’t change much for the surgery. At 5.1 cm on right and 4.8 cm on left, these definitely need to come out!

I feel relived to finally have this diagnosis nailed down after almost 2 years of really bad symptoms (dizziness and pain) and really more than a decade of choking and coughing attacks seemingly for no reason - well there was a reason after all!

For all of you here still waiting for diagnosis, Eagles or otherwise, stick to your guns and don’t give up searching until you find the answers you need. Don’t let people get you down when they act like you’re crazy or faking it, etc. - they just haven’t walked in your shoes and they don’t know any better. It is so validating to finally find the answer and even more hopeful that treatment and relief could be a reality in the not so distant future. The struggle is real, but it’s worth it! Sometimes it seems like the universe is working against you, sometimes it feels like an endurance contest, sometimes hope seems futile and depressive thoughts seep in. Just hang in there and trust yourself. There are better days ahead - believe that!

I also keep thinking about all the poor souls that came generations ahead before Dr. Eagle’s discovery and they couldn’t get any help! How fortunate we are to be in this century and with some surgeons that have some real experience with this. Wow! Even though I’m facing my first surgery ever and it’s in the base of skull area, remarkably I feel more grateful than fearful. I expect I’ll be freaking out closer to the surgery date though.

Thanks to everyone for all of the positive thoughts and tips! This is a wonderful forum filled with wonderful people! Go team Eagles!!

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This was my first surgery as well! Dr. Samji said I picked a big one lol. But if you go with him he’s very experienced and I wouldn’t worry. I was nervous once I had a surgery date set, but when I got ready to fly there I was actually really calm after that. Something about it all just felt right to me. I hope you have the same experience.

I’m 17 days out and haven’t noticed any good improvement in my glossopharyngeal neuralgia type issues and I’ve been blessed with first bite syndrome, but I can say that I am sleeping better and no longer have the sensation I’m falling or that the floor is shifting under me. My depression has lifted quite a bit as I realize I’m very ill and it will take time to see improvements. Even if it doesn’t get any better than this I would do it all over again for a chance to have my life back! I pray you get all the relief you are looking for.

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Hi One Day, Thank you for your encouraging words! I can totally relate to the sensation of falling and floor shifting (after the floor shifting episodes I really wondered if I was going crazy!), so I’m glad you don’t have those unpleasant feelings anymore and that you are sleeping better too! Getting some good sleep would make a word of difference right now. I’m glad your depression is lifting and your outlook is brightening. I think from other posts many say the nerves take longer to heal, so I hope that yours will heal in the coming weeks (or months even some say) and you’ll have your life back soon! Won’t that be wonderful!!

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Dizzylady,

Thank you for sharing your fantastic news! I played softball in my youth as well! I probably had a similar picture somewhere but was never on a team named the Eagles. :yum: Funny coincidence for you!

Your styloids are significantly long, & as you have noted, your persistence in getting a diagnosis has paid off. Getting those nasty things out of your neck should make a HUGE difference in how you feel. I hope you’re able to get a consultation with Dr. Samji soon & a surgery date shortly after that if you plan to have him do your surgery. He also did mine (2014/2015). I am so grateful for the good outcome I’ve had.

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Ouchie, they sound long! Quiet often the styloids are actually a bit longer than the measurements as it’s hard to be accurate with scans, it will be good to get them out!
Love the photo :smiling_face_with_three_hearts:

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Congrats Dizzy on the confirmation of your diagnosis and getting the scan. I had to fight with my PCP to get him to order the CT scan even though a neurologist suggested Eagles. He didnt appreciate the peer-reviewed article I brought him either. He insisted it was TMJ and even coded the OV as that which was rejected by my insurance. His notes show he was somewhat capitulating with my request to make me happy. I made him correct the record and the diagnosis codes. Low and behold the CT came back confirming the Eagles diagnosis. He sent it to me with no comment. :rofl:
I made at appt in Seattle at UW with ENT specialists. when I found out about Dr. S here, I sent him my scan and flew down to see him before I ever went in to UW docs here. The UW doc and I locked horns right away. I luckily had seen Dr. S first and held my ground about how to deal with a Eagles diagnosis.
This could have been very deflating visit and many of us here have been to docs whom don’t know much about Eagles and are dismissive. It is so important to press on when you know something is wrong and find the right doctor. I read the consult report for the UW doc and funny thing is he said he had a “pleasant” visit with me. This diagnosis is a journey and you are well on your way. Luv the pix.

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These are from the non-contrast CT. Glad to have an initial appointment with ENT surgeon soon who is familiar with this diagnosis and has a good reputation.
I hear you Snapple2020 about how frustrating it is to interface with doctors that don’t know much about Eagle’s and are dismissive. That’s how my phone consultation went today with the neurologist. He was unaware that Eagles could compress the jugular vein and lead to increased intracranial pressure and symptoms. Nearly in the same breath he told me what diuretic medication they use in the idiopathic cases, meaning he’s treating and has treated a number of people with increased intracranial pressure for what he’s determined is an unknown cause. Hmmmm … I wonder if any of those people have Eagles because he was unaware that this could be a cause and so never looked for it. Yikes! Let’s hope not.

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Wow, very long !
I was told by the first consultant I saw that it couldn’t compress the blood vessels- luckily I found an experienced doctor on here who knew otherwise! Wish I could’ve seen his face when the CT report was sent to him! At least he knows differently now!

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Those are some awfully long spikes! wow. So glad you have found a knowledgeable ES surgeon and on the right track Dizzy. It was a godsend to find this blog and to educate myself about Eagles so I could advocate for the right care and treatment. Good luck on your first consult! :smiling_face_with_three_hearts:

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Impressive spikes! So glad you finally have images & an appointment coming up. Please let us know how it goes for you. You’ll feel so much better once those things are removed from your neck!!

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