Thanks for the suggestion.
Thatās okay thanks. I was thinking I can see them on the image where it shows from behind my head. I canāt 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. Iām sorry the 3D slicer didnāt work for you but maybe the link TheDude sent will be more helpful. I agree that the first two images donāt show what we need to see. Iāll PM you a couple of my images so you know what weāre looking for in case you get a CT scan for diagnosis.
Iām sending back your āface shotā w/ annotations. Iām not sure if what Iāve marked are your styloids, but if so, it looks like both may be a bit long, & the right one looks thick as well. Iām hoping someone on our forum w/ more radiology experience can look at your images & comment, too.
Thanks @TheDude that video was helpful. While I couldnāt 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 peopleās 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! Iām 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, isnāt as long as the right one. Iām really surprised no one in the radiology lab took note of your styloids!!
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Thank thank thank you! I wasnāt even sure I had the right spot on these but glad to know I do! Iām 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 Cundiffās office but itās with his nurse practitioner since heās 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 didnāt 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 āanxietyā. 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 itās been said that he measures styloids himself & so in that case itās not too much of a problem that theyāre 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 thereās time Iād ring ahead to Dr Cundiffās office & see if you can speak to his nurse practitioner to see what will be discussed & try to judge whether itās worth going or not- some nurses can be very experienced & well qualified so it might still be helpful. (although Iām 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 donāt 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. Iām sure he will not answer me though. I just feel so afraid now and like I canāt get help fast enough. Iām trying to calm myself down but Iāve felt so very unwell for so long and itās hard to function. I am housebound mostly because of this. Our healthcare system in the US is horrendous. If itās not something simple they just tell you itās 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¦Iāve 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, itās too easy an answer for busy doctors, so youāre not aloneā¦I hope that knowing we understand & are thinking of you helps 
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Yes it helps so much to be able to talk to other people about it, thank you! My family doesnāt 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 Iām moving in the right direction. I just want confirmation that Iām not in any immediate danger from this, but I guess we just never know. Iāll 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. Iām 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. 
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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 itās 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 Iām so glad I did. I felt like I was gonna puke the whole way there because Iāve been made to feel like Iām 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 youāre right. What a relief.
But he only does intraoral and only takes the end off. He said heās 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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