I have an appointment with Dr Axon next week. I really hope he can help me.
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I hope that he will too 
I hope he will help you, too, @Hamonrye! 
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I had my appointment with Dr Axon, but the hospital where I live didn’t send all of my imaging. He could only view my head. If they’ve made comments about my styloids being 4.5cm long, and that I have jugular vein compression, then does that mean I definitely have had imaging of my head and neck? When I tried to look at my imaging there was nothing in the file, but I put it down to not having the software.
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Exceedingly frustrating that the hospital didn’t send your full set of scans to Mr. Axon so you could have a decent consult!! It’s too bad he couldn’t access them through his computer. Will you have to see him again once the proper imaging gets to him?
If the radiology report says your styloids are 4.5 cm long & that you have IJV compression, that means it definitely shows in the imaging.
I think most computers are able to open imaging files these days, but if yours won’t, & you have them uploaded onto your computer desk top, you can try putting them through either MicroDicom - https://www.microdicom.com or dicomlibrary.com which will anonymize the images & put them in 3D for you & you may be able to view them that way.
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It’s just so frustrating. I will have to have another consultation. I think I’m panicking because every test up until over the last 5 years hasn’t really shown anything. Even with evidence, I’m starting to worry that it might not be enough. I’ll have to speak to radiology and find out what’s going on.
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So frustrating for you, you would think with everything being digital it would be much easier! I agree with @Isaiah_40_31 that your imaging is right, it just needs to be sent! Sending you a hug
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I’ve had two appointments with Dr Axon now. He will need more imaging and an appointment in person. He said he only had an MRA and a CT scan of my head. I’m concerned because I feel so much better, but this is the usual pattern then I get really unwell in September. When I had this episode of symptoms last time it started with me putting up a huge sign at work. I think this is what caused my compression to get worse, as I had high pressure which then caused me to leak. I still get pulsatile tinnitus if I’m in certain positions and head pain atm. I’m just worried though that because I don’t feel as ill as I did a few weeks ago that he might not help me. I will try to request my existing images again and upload.
I wonder if I feel better because I had a leak on top and that has healed? I just don’t want to get so unwell like that again. I am still not back at work yet, but hope to go back next week.
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@Hamonrye - I expect that Dr. Axon will base his decision about offering you surgery on what your imaging shows vs the fact that your symptoms came & went. As a doctor who’s knowledgeable about the vascular symptoms of IJV compression related to ES, he must also be aware that symptoms can come & go. I suspect what you have suggested - I wonder if I feel better because I had a leak on top and that has healed? - could be the reality & as long as you don’t spring another CSF leak, you may feel a bit better for a while.
I hope you’re able to go back to work next week as planned, just be careful about your head position when you’re working so you don’t get another bad set of symptoms. 
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I agree with @Isaiah_40_31 , hopefully he’ll look at the imaging…try not to look too far ahead, it may be by the time you’ve had more imaging done, if that’s needed, and you’ve got an appointment to see him you could be going back into high pressure again…and certainly ask about the potential leak and how this has eased things (probably temporarily)…take it steady at work.
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Thank you both. I’m still getting pulsatile tinnitus, but this is mainly lying down. I’m also getting an awful stabbing pain in my head, so may of spoke too soon.
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I’m sorry you’re having the stabbing pain, @Hamonrye. It does sound like you should pursue surgery sooner than later.
That’s rough, but sometimes in an ironic way it’s helpful as a reminder to keep pushing for treatment! It is strange how ES symptoms can disappear a bit & then flare up again, who knows why!
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I have seen Dr Axon a second time and he still hasn’t got the images of my neck. He said that he only has an MRA (not sure what this means?). I’m really confused as the radiology report shows compression from styloids, so they must of scanned my neck. I have downloaded my images on my iPad, but I haven’t tried to put them through a 3D construction. I really have no idea what I’m looking at. I’m due to have the same scan again later in the month and see Dr Axon straight after. I have tried contacting PALS and they say all the imaging has been sent.
I agree that you must’ve had a CT with contrast as you have the CT report! It’s very strange but sounds like there’s been an admin error somewhere along the line between the place you had your CT done and Mr Axon’s office (an MRA is an MRI scan with contrast to see the arteries, so different to a CT) I don’t know what else you can do, other than send the imaging and report that you have to Mr Axon yourself? If you can upload it on here we can have a look & make sure you have been given the right imaging? Mistakes can happen so perhaps there’s been an error and someone else’s imaging has been sent?!
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Thanks for replying. Dr Axon says he has head images, but nothing of my neck. Can I send the file with the 2000 images to him? I’m guessing that’s not going to go via email. I’m not sure what to upload here? I have managed to put them through OsiriX HD, but I’m not sure what I’m looking for.
@Hamonrye - Here’s a link to a post that has many different types of images. You don’t need to produce a video as this member has. The 3D images we like best are toward the bottom of the images he posted.
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Thank you
I’m still trying to find the images closer to the ones posted. I’m struggling to use the viewer, but will persevere.
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