@Evey , good that you still have a fighting spirit & are keeping strong…
I’m praying for you & @Mcwelly to get some help 
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Hi @Jules - just found out today by putting in just ONE CT image onto ChatGPt (left view), my stylohyoid ligament is ossified too- how can all of this have been missed?
Still awaiting SPECT CT ……….
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If only the doctors could see what ChatGPT & other AI sites are able to! I’m sorry the doctors have missed such obvious & critical things that are visible in your CT scan, @Mcwelly. It’s very puzzling that you’ve seen so many doctors who have all seemingly missed “the elephants in the room”! You’re doing an amazing job of self advocating. I’m praying it will pay off!
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Good morning @Isaiah_40_31
Yes I am frustrated beyond words that despite believing I am a good and accurate historian, I just don’t seem to get past some horrendous barriers of what I believe are a mix of misogyny, medical gaslighting, different specialities, ignorance and old boy network! I could add good old fashioned arrogance too? I don’t even think it’s just me as I read and hear about it all of the time. Covid and the state of our health system have all contributed. Drs don’t like us using Dr Google and other programmes but what choice do we have when we are simply not believed or brushed aside with our concerns?
I had never even heard of ES before this started, despite having been a nurse for 30+ years. I sure do know a lot about it now, and a lot of other things I’ve learnt along the way. I’m so glad I found this forum, it’s a wealth of information and support and whilst I’m not there yet, reading of others’ quest for help is so helpful and uplifting 
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Hello all
I do hope I am permitted to share this and believe me I am not tech savvy at all however I managed to download Radiant and I have a few pics .
I am very limited in what I am doing and any tips to extract more information would be great.
If these aren’t permitted please delete.
As for what I can see I’m truly not sure. Can people see the styloids?
Many thanks again.
@Evey , well done with that! Obviously we’re not doctors on here, so can only comment on what we’ve learnt ourselves & not a medical opinion… but you’re styloids do look longer than average, I’m not sure if it’s an artefact, but the left side looks really thick at the top; I’m sorry, I’m not great with tech so can’t do any arrows to what I can see! The right side is long too, but not as wide at the top. They look close to the carotid arteries… What’s also ‘interesting’ & might explain some of your symptoms is that your hyoid bone processes look pretty long to me, & look very close to the carotid artery too, I think you said you have clicking when you swallow? That could be possibly from the hyoid…I also think your thyroid cartillage might be quite calcified, so that’s something else to consider…but the hyoid is quite difficult to get shortened in the UK, & Mr Axon wouldn’t do that if you could get him to do the styloids…
@Jules Many thanks for having a look.
I thought one looked thicker and it explains the choking feeling in my throat if I dare tilt my head back to even gargle it’s like I’m being strangled ! I haven’t been to a hairdresser in about 7 years !! She comes to my house and I can’t wash my hair only in a shower - no tilting my head back.
My throat is clicking quite a lot when swallowing and I’ve been getting a choking feeling for a while now.
The CBCT scan a year ago said the styloids were 4.2 and 3.9 but they don’t look so long?
The CTA was done lying flat so not positional and I wonder would this explain my symptoms when I turn my neck? Is it touching something in there.
So much to learn yet. Fingers crossed I will find some answers.
Thanks again so much for all the support 
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@Evey, I agree w/ @Jules. It looks like you have a lot going on in your neck. I’ve annotated your images below. The full length of each styloid is not visible in any of the images you posted so we have to draw our conclusions based on the parts we can see. Also, it appears only your carotid arteries are visible in these images, not the internal jugular veins. This would make sense if this was a CTA (sorry I don’t remember that fact for sure).
Besides elongated & thick styloids, it appears the greater horns of your hyoid bone are elongated, there’s calcification on the lesser horns of your hyoid at the hyoid bone end, & you also have some calcification of your thyroid cartilage. At the bottom of this post, I’ve included an internet image plus the link to the article it came from that shows similar thyroid cartilage calcification to yours which caused “Clicking Larynx Syndrome” in another patient. I’m sorry I wasn’t able to access the full article, only the abstract.
Here are your images which I annotated. I’m not a doctor & may not be 100% correct with my observations, but they can be a point for discussion when you talk to Dr. Axon again.
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@Isaiah_40_31 thank you so so much for all the work you did with the scan photos. That is a huge help especially when I will be engaging with hopefully Mr Axon and I think I am going to get a second opinion with Dr Osborne?
The clicking and lump in my throat are definitely becoming worse and I more or less had to sit up to get some sleep last night
I am so grateful to everyone for their support and help and I do feel that I am nearly to the point of finding answers and a possible solution. It’s been a long long 10 years.
I’m not sure if you can answer this but I have seen people strip back the scans further and show veins and arteries clearly. Do you think there is a way on Variant that I could do this?
Huge thanks as always xxx🌸
The arteries show up very clearly, the veins will only show if the CT was taken as the contrast dye went through them, the images you’ve posted don’t show them & without further images you wouldn’t be able to see them…
Certainly looking at your hyoid it would explain why head positions make symptoms worse, if you imagine how they would move with every turn , & that could bring them closer to the carotid arteries… Obviously not doctors here but I don’t think the styloids are maybe the only things causing your symptoms, & unfortunately getting the hyoid resected if that’s what’s needed won’t be easy in the UK. Mr Axon definitely wouldn’t do that as he’s a skull base surgeon…
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@Evey, I recall that @Limezest offered to help with your scans? If so, you can send him a link to your scans, or he can direct you how to upload them so he can help you get better views. He’s also amazing at seeing things in the scans we miss. Try sending him a PM to get that started.
If you’re able to travel to the US to see Dr. Osborne, he may be able to help with your hyoid, too, but I don’t know that for a fact. It just seems his surgical skills are very broad reaching. Other US doctors who will do hyoid bone resection are Dr. Cognetti in Philadelphia, PA, & Dr. Dewan in Shreveport, Louisiana, if you can’t find help in the UK. Dr. Aghayev in Turkey has also helped a number of our members including a few from the UK, & he might do hyoid surgeries, but again, I don’t know that for a fact.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. David M Cognetti MD | Jefferson Health
•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050
https://www.ochsnerlsuhs.org/doctors/karuna-dewan
I hope you’re able to get answers & an offer of help very soon!
@Jules thank you so much for your help. I have had to post the disc to Mr Axon and I am also sending one to Dr Osborne for a second opinion.
It’s a slow process and I wish it was faster but I just have to be patient!
Another question, I have had the most awful flare up of stomach issues since I had my CTA with contrast and the lump in my throat has ramped up a lot.
I had a touch of gastritis when I went for the scan and I had such a dreadful reaction whilst having the scan and for about 6/8 hours afterwards. Coughing and a heavy heavy feeling on my chest it was terrible .
I’m trying to figure out did the contrast irritate my gastritis further.
I’m not sure has this happened to anyone else.
@Isaiah_40_31 huge thanks for all this information I really appreciate it.
So the update is I have posted a disc to Mr Axon and he is awaiting it for review. He did email me a report letter from our last zoom .
I have been in touch with Dr Osborne office yesterday and I sent on file through a link but they didn’t transfer so they have asked me to post the disc also. A job for today!
@LimeZest did kindly reach out and we corresponded privately about setting up a time to help me with the scan over the next week or so as they are away currently. It is fantastic to be offered so much help and I am so grateful.
I mentioned above that since I had the CTA I have had dreadful stomach issues and I think the contrast has irritated my low grade gastritis that was going on before the scan. I’m not sure if others had this terrible reaction to the contrast but I felt dreadful for about 6/8 hours afterwards.
I’m hoping to see my doctor today about the stomach issues that aren’t resolving.
Many thanks again for all your help 
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I’m sorry that you’ve got a gastritis flare up, iodine is generally safe and doesn’t often cause stomach problems (it’s given through the veins so not taken orally), but it could be you’re very unlucky & have had a bit of a reaction, or maybe something else has caused your stomach to play up. (I have bouts periodically & know to avoid things, but it seems new foods or drinks flare it regularly now, I don’t like taking omeprazole but it does work quite quickly for me.) It could otherwise be the vagus nerve affecting your stomach, that’s a common nerve to be affected with ES… Hope your GP is helpful
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I’m glad you’ve gotten your CTA sent off to Dr. Axon & hopefully by now, Dr. Osborne. I’m also very interested in what @LimeZest tells you he sees as you two “take a walk” through your CTA. I’m looking forward to your updates, @Evey, and praying for you to get the help you need very soon.
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Hello @Isaiah_40_31 @Jules
My apologies for this long gap since we last were in touch and thank you for all the ongoing support. I found I needed to take a break from all the research as I wasn’t feeling the best.
I had to take Zofran for my stomach and it has helped a lot .
My update is not much to be honest as I was told that Mr Axon was in surgery today and they had downloaded my disc at the hospital and were hoping he would review it. However, I checked in this afternoon and he is away now until the end of May.
I hope everyone is well and apologies again for my delayed response
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Glad that you’re stomach has improved… another wait now to hear from Mr Axon- have you managed to get the imaging sent to Dr Osborne?
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I’m so sorry for the delay in response from Mr. Axon, @Evey. It seems when we don’t feel good that we must “hurry up & wait” i.e hurry to provide our information to the doctor then wait & wait for a response. I think it’s one way God works on teaching us patience. 
@Jules I was so convinced I’d hear from Mr Axon soon that I held off posting the disc to the US. I uploaded it to their portal but they came back to say they couldn’t access it so to post it to them in the US .
I wish I had gone ahead and posted it as I bet I would have had a conversation faster with Dr Osborne. It’s the waiting not knowing is trying.
Thanks again @Jules
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@Isaiah_40_31 thank you and yes you are right it’s the waiting and not knowing is very trying .
Patience is a virtue for sure.
I hope you are keeping well
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