Yes bad radiologist reports are a big issue almost always sadly. Hoping AI may help that. London Bridge report missed my JV bilateral JV compressions “both JVs are patent throughout”- but Mr T identified compressions. He said it just depends on what radiologist knows (or not!). D
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I have been viewing the webinar of top US docs (Hepworth/Hui etc), recently posted under glymphatic system topic. I’d highly recommend watching this webinar. I am going to renew my efforts to get private script for Plavix now. Hope to discuss this webinar with UK docs too when next see them. D
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Prof. Higgins was a part of the panel in the webinar you’re referring to so at least some UK docs are familiar with the vascular outflow group. The link to the seminar has been posted on this forum several times so I expect it’s been watched by many of our members.
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It’s a pity Mr Higgins is unwell and so I assume he is not treating patients for now. Mr Axon told me he was absent Sept 2023. Webinar is very helpful. But is it not ongoing webinars as only found one? D
Yes, @PatientD. There was just one webinar. It occurred this past May. It was groundbreaking for future events, I believe, though I don’t know if/when those may occur.
It was very encouraging to see this medical group together. I hope they continue soon. I saw patients join but guess it’s just patients of those doctors, not the rest of us. D
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I’m not sure who the patients were that were part of the webinar, but it makes sense they were patients of the featured doctors. I agree, it would be great if they updated information as they make new discoveries & learn new surgical techniques. Dr. Costantino should be on the panel next time, too, since he’s doing some novel surgical procedures now.
Decided to do something cathartic and write about my experience.
https://gurnanipratik.wordpress.com/2023/12/26/10/
If anyone fancies a read on my journey
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@LimeZest - Very interesting article! I’m quite impressed at what you’ve overcome to maintain your “new” (not so new now 
) job & continue to work at a level that is satisfying for you & giving you academic, professional & intellectual growth all while dealing with terrible VES symptoms. I’m glad the symptoms have subsided enough to allow you to press on with your life. Thank you for the positive nod to this forum. I’m very happy you found us!
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@Isaiah_40_31 thank you! This was my first time writing something like this. I hope it reads well. I’m used to writing academic papers so trying to make this compelling was quite different.
I dont quite know how I improved, whether my body has just created alternative venous outflow pathways, or perhaps I dont actually have VES. The styloid C1 interspaces I have are extremely narrow but won’t know until I get the CTV done anyway.
But ultimately I see myself as fortunate that I have been able to continue working, I know not everyone gets the same. So if I am able to, I will persevere.
This forum is literally incredible, the advice and help people like you, @Jules, @PatientD and others give here is life saving. I think just not feeling alone is a good start.
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