Great to hear you don’t have to wait until April! I remember @PatientD said that the radiologist missed IJV compression and Mr T noticed it. So I guess just wait and see what Mr T says 
I think just like the debate over how long a styloid needs to be to cause symptoms, so is the how compressed does a vascular tissue need to be to cause symptoms. I agree w/ @LimeZest that Mr. Timothy may have a different opinion of what your scan shows. It seems a different pair of eyes/point of view can totally change a diagnosis.
Yes and at least I don’t have too long to wait for my consultation now. I need to write down some questions as my brain doesn’t work at all at the minute 
I want to ask about the mild post stenotic dilation as my vein swells up intermittently and was not swollen on the day of the scan. Also I might need scanning lower than the jugular and wonder if my artery is also impinged as that would not show on a ctv.
Thank you
I note radiology your report says there is some compression at C1 level but it fails to state whether the compression is being caused by C1, styloid bone or both. If possible I would ask the radiologist to clarify this in Addendum to report.
I would also email the reports to Mr Timothy, calling out compression, explain how severe your symptoms are and ask if he can see you any earlier or if he can put you on cancellation list for earlier date.
If C1 is causing the compression then Mr T has operated on me to trim C1 and reduce compression. But he does not remove styloid bone as medics in ENT field cover this (although few if any know about VES or are willing to carry out high risk op of removing at skull base). Mr T did cut my styloid at skull base on unplanned basis on left as it was compressing my JV too, but that is not usual for him. I wish they’d develop a method to do both at same time as so close together, or do combined ops with both ENT/Neurosurgeons but no sign of that happening anytime soon.
The US doctors spoke about using Plavix to help patients but as UK doctors not aware it’s very hard to get this prescribed here. I only just got some after almost 2 years of trying.
Hope you get help soon. Take care. D
I was under the impression the mr Timothy reads the scans also as he ordered it. I don’t know though. His secretary emailed me that last night as I said I was really unwell and would like to see the report. Hopefully he will go over everything in detail and advise regarding all including the csf leak and brain lesion. I know he can’t help with it all but he has more knowledge than most.
My appointment was supposed to be March and it’s been brought forward to a week on Thursday but even that seems so far away. I feel like I’m slipping away and something bad is going to happen. It’s not anxiety, I can just feel it. I have a lot going on I suppose 
Thank you for your advice because I seem to learn more from patients than drs. Are you well enough to function now? Sorry if I’ve asked you before but my brain just doesn’t retain information anymore.
Also when I look at my sagital mri there is something that is touching what I think is a vessel. I’m not sure if it’s the hyoid. When I compare my MRIs to normal ones it just doesn’t look right. Is mr Timothy likely to mention the stuff he doesn’t treat? Was he helpful with you?
Thank you
So pleased that your appt has been brought forward, it must still seem a way away but hang in then & I hope that the time passes quickly 
Hi
Sorry for the long post
So I had my appointment on zoom with Mr Timothy and I think it was a waste of £400. I could barely see the scans and it felt rushed.
He basically latched onto the idea that I have EDS as my son does and is asking my GP to refer me to rheumatology for diagnosis. I don’t believe they will accept that referral but that’s another story.
He also asked me about neck pain which I do get but that isn’t something I’d go to the dr with. He’s wrote occipitocervical neck pain as my main complaint on the letter
He am said he’s never seen external jugular veins so large but doesn’t think they are the problem. I think my left side is as my neck swells up😩
He said I have mild compression on the left at C1 but my blood is getting through so did not suggest c1 shave. Is it getting through when I’m upright or move my head though? I only saw at a glance but I’m sure it was c1 and the styloid but he never mentioned the styloid. The report said mild impingement at c1 and jugular post stenotic dilatation. He never explained this as he was fixed on EDS.
I asked about5the possibility of my artery being compressed due to the large vein and he looked at the scan and said my artery is causing an indentation on the vein but the vein would not compress the artery. Again what happens when I move my head?
I feel really let down and paid £1200 for the ctv that I’m requesting copies of and £400 for 30 minutes for someone to label me with EDS that hasn’t even met me. He suggested physio with his recommended EDS physio £100 per hour😳 has anyone tried this? and maybe a collar.
He also said to ask my gp to refer me to a neurosurgeon on the nhs for a second opinion (like that’s going to happen) in the letter he put suspected csf leak when I’d sent him the information confirming my leak.
Sorry to go on but I wanted your thoughts on this consultation? I can’t keep paying out money and getting nowhere. if I’m honest and once he’d made his mind up about EDS that was it😩
I don’t want unnecessary procedures so happy if I do not need a c1 shave but I definitely have vascular symptoms going on😢
I will post my ctv scans when I get them and work out how to view them on my Mac. Is it the same as MRIs?
I would just like to add that when I asked him why I should ask my gp to refer me to an nhs neurosurgeon when I’m speaking to one right now lol he said because it would probably cost about £40000 private but he didn’t say what. I’m guessing he’s thinking EDS and fusion.
Sorry to go on and on but I’m hoping someone has had similar and can advise.
Also when people reply I try to type thank you but it does not reply as I’ve realised it’s not enough text. So thank you to anyone who’s commented on my post.
Dr Ellis phoning me Tuesday to discuss blood patch which I’ve been advised against on my csf leak group as they do not work for ventral leaks Why on earth are they putting me through it if that’s the case?
I’m going to post a picture, not very pretty but to show how my neck was swollen when I lost my hearing in December. It was swollen behind the jugular vein and I was basically bedbound when this happened. When I lost my hearing i also had a new symptom of choking even on my saliva and had vision issues in my left eye. I can be upright for short periods now but I have to lie down a lot and feel extremely exhausted all the time.
Again I apologise for the long post x
I’m so sorry that you have been waiting for this appt, pinning your hopes on it & then nothing helpful out of it! Especially when you’re paying for this privately… @Mcwelly had a similarly frustrating appt with Mr Hughes recently so you’re not the only one.
From what I’ve read, a distended jugular vein in the neck is usually caused by pressure on it & a backlog lower down, from the heart or lungs rather than from above it in the neck, where the styloids are? Maybe that’s something you should look into, speak to your GP about?
So frustrating to be labelled as EDS without a face to face appt, although if your son has it, it’s hereditary so maybe you do, do you have any symptoms?
Re the vein potentially compressing the artery, I believe that veins have thinner walls and collapse/ compress easier than arteries, so I would think it unlikely a vein could compress it, as Mr Timothy says. But IJV compression in others has been dismissed as not significant when members have definitely had symptoms, so because he’s not concerned doesn’t mean it’s not an issue for you…
The CTV is different to an MRI, it should show the styloids & any significant compression by those & C1, if there is compression lower down the jugular vein if you just had head and neck scanned it might not be enough to show anything there…Have you looked into Thoracic Outlet Syndrome, maybe that could cause a back up?
Internal jugular vein stenosis is common in patients presenting with neurogenic thoracic outlet syndrome - PubMed (nih.gov)
How helpful is Dr Ellis that you’ll be speaking to this week, would they be open to discussing these concerns?
Sending you a hug & sorry I can’t be more helpful, hopefully when you get the scan images others can comment…
Thank you and I think I’ve thought of all theses things but as no one listens and I’m just crazy with mental health issues 
I definitely think there is a problem lower down but cannot afford to pay out anymore.
The only positive was I spoke to the physio on the phone today and she was lovely and informative. She has EDS and is doing a phd in the subject. She suggested I get genetic for the rarer types of EDS due to my vascular symptoms. She is very knowledgeable and I will book a few sessions with her when I feel up to it.
Dr Ellis is lovely but don’t think this is his remit and it took a lot of crying and complaining to even get a phone call before the blood patch.
I’m waiting for a ct scan from cardiology but the list is very long and guessing unless something majorly obvious is on there it will be read as normal.
@kel34ban - Please don’t ever apologize for long posts. We’re good with those! I love your pictures. Your dog looks like a sweetie. I love the snout on English Bull Terriers! Glad you have a “therapy dog” of sorts. We were dog sitting a papillon when I had my ES surgeries & he came & curled up next to me for the days I camped out in our recliner. It was very comforting. 
I agree that your appt. w Mr. Timothy was very disappointing. I am especially sorry to hear that he “stuck you in a box” early in the conversation then couldn’t think or see outside of that box as he listened to your symptoms discussion. We have a member @slekeille - who has vEDS, but I believe all our other members have hEDS so the vascular version is much more rare. I think the testing to find out what you do have is very important & I’d focus on that soon. Hopefully you’re able to get the CT scan sooner than later 
.
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Agreed about the blood patch, too. If the cause of the high pressure that caused the leak in the first place isn’t resolved before the patch is placed, it will more than likely not stay put.
I might be off the mark on this — but in this post, the way the arteries in your head dilate and your head becomes reddish during neck extension seems highly indicative of TOS-CVH to my layman’s eyes. The thick band at the side of your neck seems to be a thick and fibrotic scalene muscle? — heavily implicated in TOS CVH.
You can check my previous posts for my experience with TOS surgery.
Kjetil Larsen is the expert on TOS CVH so it might be a good idea to consult with him. You can check the paper on TOS CVH that he wrote here:
https://www.apicareonline.com/index.php/APIC/article/view/1230/2037
You can see in Figure 1, the arteries in the head seem to dilate and head becomes red with neck extension, and a thick and fibrotic scalene muscle at the side of the neck, which seems very similar to your picture:
Great insight & information, @Bowser. Thank you for sharing this!
Yes thank you. I had looked up TOS because my vein swells in a massive lump under my collar bone and I feel like something is catching.
My vascular symptoms feel like they start from there. For example if I did pull ups in the gym (when I could go to the gym) I started to feel something was wrong in that area.
After I collapsed with stroke symptoms I felt like something was travelling up my neck and behind my eye and I had to lie flat quickly to resolve the feeling. It felt very vascular at the time and took months for that feeling to stop.
I’d dismissed TOS as I do not have arm symptoms or numbness. I will look into it again but I’m guessing it’s another thing the NHS do not help with😢 know it goes with EDS. I will also have a look on here and perhaps the physio I spoke to Sunday will be able to advise. Feel like Thank you
I have just seen the images now. When I lean forward slightly I’ve started to get massive veins and pressure in my head and if I lean forward further for example when putting shoes on I get oedema and my veins bulge even more. I’m guessing they are new collateral veins.
I honestly do not know what is causing all these things to happen. Maybe it is EDS and age I think going private has been a waste of money as each person specialises in their own area/treatment and when they write letters back to my gp the seem to miss out the issues I went with
I just find it so hard to comprehend that when I have physical signs they can see as well as horrendous symptoms that everyone just passes the book. Oh well that’s my rant over
Thank you everyone
TOS-CVH (TOS-induced cerebrovascular hyperperfusion) is I believe a distinct condition from neurogenic TOS, so it is perfectly possible to have TOS without arm pain, numbness or any of the more traditional nTOS symptoms. I certainly did not have them.
In this condition there is excessive blood flow to the head as blood is redirected from the arm to the head due to compression of the subclavian artery which supplies the arm. The blood redirects to the carotid artery which supplies the brain.
My understanding is that in TOS-CVH, the scalene muscle is involved in compression to a much greater degree than the first rib, which might explain the lack of nTOS symptoms.
Compression by the first rib could be visible on imaging but even severe compression by a thick and fibrotic scalene muscle could be practically invisible on imaging. So the diagnosis can only be made clinically. But perhaps only a handful of surgeons and physios in the world are even aware that this condition exists. Most lack the knowledge to diagnose it properly.
I have found a vascular surgeon who treats TOS but would he be knowledgeable in this type? You’d like to think so but I won’t hold my breath
Have you had treatment for this and how are you now?
Yes I experienced massive symptom relief from TOS surgery, but I do now have the added complication of unresolved Eagle syndrome. You can read my story here:
I was thinking to at a minimum see a vascular surgeon. As @Bowser mentioned, might be hard to find one that knows of TOS-CVH but to get vascular eyes on this problem would seem a good first step (and of course as you know finding one knowledgeable or able to track down the problem is key).