Best of luck!
Let us know when you can! 
Hi - good news today from Queens Sq - internal jugular vein decompression surgeries have worked.
At tip of Dens level (near C1/C2 fusion) my left IJV is now 7mm wide (it was 2mm before) and right IJV is now 6mm (it was 1mm before). It was a nice change to get some good news on the health front for a change.
Still struggling to get copy of CT scan images but will persevere. Mr Hughes has the scans ready for my follow up consult this Friday.
They agreed to tell my GP I can try Plavix in case it helps me.
Got some further pieces of advice which will post soon in case helps others.
Promised to keep in touch as they want to know how I get on with recovery after all my surgeries last year.
Itās been good to have you all for company as you understand this difficult journey.
I did tell them how much other patients are struggling for a diagnosis and to get the surgeries and help they need. D
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Great news 
Hopefully the symptoms continue to go in the right direction. Was it Mr Watkins that you saw there?
Yes Mr watkins has been my only consultant at Queens Square. He has been a great source of advice. Glad his efforts were not in vain. D
Iām so glad to read your good news, @PatientD! Hooray for open IJVs!! I hope w/ time & further healing, you will begin feeling much better. It can feel like quite the slog over the course of a year awaiting signs of returning health, but crossing the finish line will feel like an amazing victory!!
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Wow, this is such great news to hear. You must feel so relievedā¦ Thank you so much for keeping us updated. And for being so helpful with sharing what youāve learned that may be of value to others embarking on their own path to healing. Keep up the great work!
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Thanks everyone, much appreciated. D 
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THatās really good news, hopefully with time your symptoms will improve, must be a big relief
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It is reassuring to know IJVs have improved from factual medical evidence. But with CCI/spinal fusion as well as vES getting worse for so many years without help, I remain unclear yet how much of my health I can recover. Have started gentle rehab work now but only time will tell. Terrible vertigo attacks continue but know most of triggers to avoid now & how to manage/reduce. Thanks. D
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Hi, in case helps others, Mr Watkins explained that if the spinal drainage system when upright is not working well, then as pressure rises in skull/brain the JVs should open more fully to relieve the pressure. Little can be done surgically to improve upright drainage system. Rehab work may help. But where do I find rehab help from?
This is Probably more relevant to those of us with both CES and CCI issues. Think my body is starting to do that as pulse will rise when upright (for no logical reason) then think as JVs open I will start to choke as fluids travel down JVs at front of neck.
Hoping in time this will improve further. D
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Interesting. If itās not CCI, is there any other reason why would it not work well when upright? And sorry what does CES stand for? Something eagles syndrome presumably
If you have issues with choking, I presume youāre familiar with dysphagia? If you are then I would highly recommend tongue strengthening exercises. If youād like more info on this, please do say.
Are you familiar with Kjetil Larsenās work? I think he has a pretty unique and strong understanding of which muscles to strengthen the upper cervical spine to help with cerebral venous drainage.
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Thank you. I meant VES - typo. I donāt know what else might cause upright problems but I believe I had this both before and after fusion. If I work out more things that help I will post them. I do plan to try Novothor sessions but have respiratory viral problem now so waiting until fix that. Also doing start of other rehab.
My choking only happens when blood/fluids are draining down JVs, not otherwise, but thanks for the suggestions, I will take a look at those issues soon & ask any more questions. Thanks. D
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Iām surprised heās said that nothing surgical can help the drainage system when upright, surely eagles jugular syndrome from the styloids or C1 impinging on the IJV is causing the issues with the drainage system when upright. Does he not take VES seriously or something?
He knows from scan in Dec that my VES compression of JVs is now fixed. He was supportive of VES surgery. So his advice was in context if ves being fixed, spinal fusion for CCI done, but spinal drainage not working well. I think he understands CCI & VES more than most & asked me to keep in touch to see how I do as recover. D
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I would like to read more about K Larsen work. Do you have any good links to his resources? Thanks. D
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Hereās a tiny bit of readingā¦ Iām afraid some of his articles as highly interesting as they often are, can be very long. But they often do include rehab exercises, solutions, etc. FYI he often has a recap/summary at the bottom of each article if you just want a quick breakdown of what heās written.
Intracranial hypertension: Beyond CSF. Diagnosis and treatment - MSK Neurology
Atlas joint instability: Causes, consequences and solutions - MSK Neurology
The multifactorial causes and solutions to chronic neck pain - MSK Neurology
How to truly identify and treat thoracic outlet syndrome (TOS) - MSK Neurology
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Thanks for the info! D
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No problem