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Thanks for the suggestion.

Thatā€™s okay thanks. I was thinking I can see them on the image where it shows from behind my head. I canā€™t for the life of me get the 3D slicer to work. I will reach out to one of the doctors near me that is familiar with ES.

A post was split to a new topic: 3D Slicer Tutorial Video

one-day,

You did a fine job putting your images up. Iā€™m sorry the 3D slicer didnā€™t work for you but maybe the link TheDude sent will be more helpful. I agree that the first two images donā€™t show what we need to see. Iā€™ll PM you a couple of my images so you know what weā€™re looking for in case you get a CT scan for diagnosis.

Iā€™m sending back your ā€œface shotā€ w/ annotations. Iā€™m not sure if what Iā€™ve marked are your styloids, but if so, it looks like both may be a bit long, & the right one looks thick as well. Iā€™m hoping someone on our forum w/ more radiology experience can look at your images & comment, too.

Thanks @TheDude that video was helpful. While I couldnā€™t figure it out fully I think I have some decent 3D images now. I believe my right one is long for sure. Of course I am not a doctor but I have so many symptoms and have spent hours already reading here and looking at other peopleā€™s scans. On the last one if you look through the holes which I believe to be my eye sockets I circled what I think might be my styloids.

Good job! Iā€™m glad that it worked and the area of interest is fully exposed.

I would agree now that your styloids seem to be quite long or calcified. That could of course cause your symptoms in my opinion.

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Nice job with the 3D images, one_day! Yes, by our standards, I would say you have ES. TheDude made a good call. Your right styloid is very long, & your left one, though longer than normal, isnā€™t as long as the right one. Iā€™m really surprised no one in the radiology lab took note of your styloids!!

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Thank thank thank you! I wasnā€™t even sure I had the right spot on these but glad to know I do! Iā€™m so relieved to have an answer. Of course it may be something else but this seems to fit with my pain and tingling. Literally thought I was having a stroke when it started 5 years ago. I am seeing a doctor that Jules recommended next week!

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Mine was also diagnosed by a TMJ specialist when he did a panoramic x-ray.

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Well done getting them on, & thanks to TheDude again for his helpful tutorial!
Yes, definitely long, especially the right one, & they look pretty sharp points on yours too! Glad that you can see someone; best wishes for that & let us know how you get on!

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I have an appointment this Friday at Dr. Jason Cundiffā€™s office but itā€™s with his nurse practitioner since heā€™s booked up for the next month. Is it even worth seeing her first?

I have also reached out to Dr. Samji and was provided instructions to mail him my CD with the report and patient form. She did say the CT should be non-contrast, but I only have one with. She advised me to send it anyway, but that if it didnā€™t have what he needs I would have to get one without contrast. The current scan and the accompanying report make no mention of the styloids either which I know she asked for the report to have measurements. For those of you who have been down this road what should I do? Should I request another scan w/o contrast and specifically looking for ES? I am struggle to advocate for myself anymore since my PCP only ever wants to discuss my ā€œanxietyā€. Is it worth it to send them what I have and wait and see or should I try to pursue an additional test? I feel worse with every passing day and some days I am sure this thing is actually killing me. I have so many heart-type issues, breathing issues, dizzy and off-balance etc.

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Hopefully someone who has seen Dr Samji can comment, but I thought itā€™s been said that he measures styloids himself & so in that case itā€™s not too much of a problem that theyā€™re not measuredā€¦are you able to send the 3D images you put on here as well? Just include as much as possible! It sounds like his assistant was helpful & you could get a non-contrast one later if needed.
Personally if thereā€™s time Iā€™d ring ahead to Dr Cundiffā€™s office & see if you can speak to his nurse practitioner to see what will be discussed & try to judge whether itā€™s worth going or not- some nurses can be very experienced & well qualified so it might still be helpful. (although Iā€™m UK, so a different system, but the nurse practitioners at our health centre can be more helpful than the doctors!)
If you have to see your PCP again, you could always print off info about effects of Vagus nerve irritation, & any research papers showing that it can be irritated by the styloid processes, & show them! It is hard to stand up for yourself, I find it helps to write things down so I donā€™t get all flustered & forget, & to take someone with me, although that might not be possible in these Covid timesā€¦

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Thanks Jules. I did email my old ENT and asked him to review my last CT scan to check for Eagles. Iā€™m sure he will not answer me though. I just feel so afraid now and like I canā€™t get help fast enough. Iā€™m trying to calm myself down but Iā€™ve felt so very unwell for so long and itā€™s hard to function. I am housebound mostly because of this. Our healthcare system in the US is horrendous. If itā€™s not something simple they just tell you itā€™s anxiety and close the door. My vision is going, my heart palpitations are scaring me, and I can barely walk around anymore.

Sounds really difficult for youā€¦Iā€™ve learnt on here that no healthcare system is ideal- in the UK the waiting times are ridiculous, & that was before Covid, now pretty much everything has been halted!
Unfortunately many members have been dismissed with anxiety, itā€™s too easy an answer for busy doctors, so youā€™re not aloneā€¦I hope that knowing we understand & are thinking of you helps :hugs:

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Yes it helps so much to be able to talk to other people about it, thank you! My family doesnā€™t get it nor can you really complain about something every day for years if you expect people to stick around lol. Anyway I guess for now I just need to stay the course and hope that Iā€™m moving in the right direction. I just want confirmation that Iā€™m not in any immediate danger from this, but I guess we just never know. Iā€™ll reach out to the office for my appointment Friday and see if I can get more details.

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Mine was also diagnosed with panoramic x-rays by my dentist

I feel you one_day. All your symptoms are much like the same as mine including anxiety which always happens during that whooshing pulsating in my right ear. Iā€™m trying to control it by keeping myself calm and not make any sudden move. Just hang in there. We have good angels with us. They know who they are. :wink:

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Well I have officially joined the club here! Thank God for knowledgeable doctors who are willing to listen. 3.75 on the right.

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Well, good that itā€™s confirmedā€¦a good call getting your CT reviewed, glad that the ENT listened, & well done advocating for yourself!

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Thanks! I had to really dig deep on this one to find the strength and Iā€™m so glad I did. I felt like I was gonna puke the whole way there because Iā€™ve been made to feel like Iā€™m crazy for the past decade. I came right out and told him what I thought. He checked the scans, pushed it in my mouth and said yes youā€™re right. What a relief.

But he only does intraoral and only takes the end off. He said heā€™s done about 20 of them. From everything I have read here I would prefer to send my scans to Dr. Samji as well.

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