Little bit confused as from reading your post again you say they strip personal info from imaging, but they say don’t upload imaging with info written on image… 
For all I know, they strip that info from the images (mine had info in it and is removed when I uploaded it). One way to test that, is to upload the CTV and see it yourself if the info is still on the images before sharing it.
BTW, does the MRA include the head or only limited to upper limbs & neck? For DAVF, it is important to go into the head.
I won’t mind giving my personal email to get the images too
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I think they mean if this info is imprinted to the image itself (can’t be decoupled from the image). Usually, the personal info is kept in separate file or metadata file or something and is combined with the images when using the dicom software (based on my assumption). So I think they can strip that info before uploading.
Thank you, yes I think that would be easiest to get your email so I can send it all via G drive.
Unfortunately I wasn’t able to get an MRA of my head, although I did try. I only just managed to get one of my neck as the scan was only really being done to investigate Venous Thoracic Outlet Syndrome.
Hi, I am seeing Mr Hughes again tmrw. Right side is doing well post op & JV right side is fully open.
Sadly I think left side is not ok and get bad symptoms if tilt head downwards. So just cutting styloid (with C1 trim) May have helped open JV but not fixed left side fully. Am hoping he will agree to help me. As styloid already cut away from skull am hoping this makes things easier.
Queens Sq have suggested a CT neck/head scan with contrast & head movements to help see what is going on now. Will have to see what Mr Hughes thinks tmrw. 
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@PatientD - The suggested scan would be very helpful to show if your IJV is being compressed in various head positions. Glad they recommended a dynamic CT. That’s something our members usually have to fight for.
I hope that your appt goes okay & you can get the scan done…great that your right side is healing well, a shame about the left, I hope that Dr Hughes can help. Thinking of you 
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Thank you 
Mr Hughes agreed to help me today by removing left styloid & calcified ligament. Not looking forward to another operation but hoping this will fix ves issues. D
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@PatientD - is that the styloid that was removed during your cervical fusion? I’m sorry, I’ve lost track. At any rate, I’m so glad Mr. Hughes will help you, but am sorry you’re looking at another surgery. Hopefully you’ll be good as new after the next one! 
Hi,so at time of fusion right C1 tubicle was trimmed, styloid was left in May. Mr Hughes removed right styloid/ligament August.
Right C1 was trimmed Jan & styloid cut on unplanned basis. Trying to fix left styloid/ligament removal now with Mr Hughes. D
Got it. Your story is a bit more convoluted that most which makes it interesting but harder to keep straight. 
Hope one day medics find a way to trim C1 & remove styloid in one go. All these repeat surgeries are very tough. Hoping this will be my last one
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On topic of eye symptoms I wanted to post here that National Neuro hospital advised me this week that most common eye issues from intercranial hypertension are tunnel vision and papilledema. The latter requires urgent treatment to prevent blindness. A Neuro opthomologist is expert at treating this, but there aren’t many of them around. I can see others have experienced eye symptoms with VES so sharing this info in case helps others. D
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Not great having another surgery, you’ll have had nearly as many as @TheDude! I hope this is definitely the last one…will it be long to wait?
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Not sure on date yet, waiting to hear. Hoping for this year (& not just before Xmas). D
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Hi @jimjammer123, I can’t get a reply to your latest questions sent (log in issues), so post answers here. Hope that’s ok.
Imaging- Mr T had me do a MRI & a CT scan with contrast and head turning, both at London Bridge Hospital. I think his main concerns will be quality of imaging (machines with high resolution) & radiologist reporting on scans. My radiology report missed everything but scans meant Mr T could see what was wrong.
If C1 bilateral trim is needed, then doing both at same time should save costs- only one night, only one theatre/Anesthetist cost & mr T time. But I think he would charge bit more for his time/risk in doing both at once. One op good for you in one way, but would mean swelling on both sides at same time which could be tricky. Was much less swelling with C1 trim behind ear, but there was some. Worth asking him if can do both sides if scans show that will help. I don’t know what he will say.
Based on what I now know I would have asked Mr T if I could tip head down in CT scan, as well as head turn, as Arizona paper on this site talks about head flexion compressing JV between C1 & styloid & that is clearly a factor for me.
He is a nice man who does care about his patients. Good luck! D
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Thank you for your response, this was very helpful to read. Wherever I get my scans done quality of imaging will be right up there in terms of importance. Presumably you were asked to do a 90 degree head turn on both sides? I’ll also make sure to get flexion done if I can.
I can’t find this flexion study from arizona in the papers section or from googling keywords that you’re referring to, could you possibly share?
Considering that some people have had both styloids out at the same time, and as you say the styloid surgery produced much more swelling, I’d be more inclined to have both TP’s of the C1 done at the same time if he felt it was necessary. But I’m not sure I’d have both SP’s done for obvious reasons.
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Don’t worry about the paper as I’ve found it 
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Great. In case helps I just asked for quote from Queens Sq for that scan as considering doing this again before left styloid removal on 19/11. Queens Sq told me self pay price is £450-550 and they have availability most days. Not sure how that compares to other quotes but suspect it is quite reasonable. Of course you need to see a consultant to order it for you. I see Mr Watkins who charges me £150 for consult, which again is lower than most. Helpful for diagnostics but still need mr T ok & to do C1 surgery. D
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Hi, agree with Jules. It’s highly unlikely GP will know about Eagles so taking a extract about it may help. some medics can be defensive about “dr Google” so be prepared for that. I think NHS referral to Nr Hughes is your best bet, Axon/Cambridge team have big delays. Make sure referral is urgent, not routine. Medics are not good at diagnosis beyond the most co Lo Lvious causes & will try to go down that path first. That will waste your time.
Be sure to emphasise your pulsitile tinnitus symptom as that strongly suggests ENT diagnostic help is needed. Look at patient advocacy advice and be strong about getting the ENt diagnostic help you need. I make a numbered bullet point list and make sure I cover them all. Can be tricky in a short appt & easy to miss things. (I only ever have PT on changing position too, mostly supine to sitting. Some others have constant PT & Axon looks fir that now).
Be prepared for GP to gaslight your problems “just take pain meds”, “you are too young for this illness” etc. Getting an accurate and early diagnosis is very important, don’t settle for anything short of that.
After you see your GP you can think about next steps & if you want a private consult. It’s always your health data and if you don’t want the private doctor to tell your GP you can say that & legally they have to comply (save in extreme circs).
Good luck with GP visit. And let us know how you get on. We all want to help you. Sorry you are facing ill health at a young age. Stay strong. D
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