Hi everyone sorry to keep posting.
I am just wondering if people with vascular eagles feel spacey all the time?
I feel I may be alone with this symptom. I have many many more but this is my most debilitating.
I feel like there is a plug at the base of my skull trapping blood flow and circulation to my brain. And I can see everything but I’m detached from it, like I’m high or something
And I have this sucking woozy head and sucking of my eyes. Like a pulling, heavy, numb woozy feeling.
I do get bouts of extreme pulsing head pain too on the slightest movement
Make me feel like I have a floaty head but something inside it too. If I stand too quickly or after a period of sitting down then getting up, it’s like a flow of fluid trying to push through a pin hole then everything restricts in my Chest and neck and Then I hear the whooshing and eyes will pulse sometimes.
Honestly after 2.5 years like this, I am so scared. Ultrasound Doppler showed very narrow jugular vein diameters of 1mm and 1.5mm at mid (not sure what is at mid level) and high velocity of 130cm in right jugular.
Just feel like I’m going mad sometimes. When I get severely spaced out and feel like my neck and head our cut off from flow,I go in to a presyncope state and have severe spaciness and brain fog, word finding difficulties etc
Thanks for reading
Spaciness, fuzzy brain, wooziness, & all the other symptoms you mentioned are very common w/ vascular compression which you clearly have based on your test result. Jules had the spacey/fuzzy brain problem as have numerous others on our forum. You are not alone. Are you making progress in finding someone to do your surgery? Getting the styloid(s) removed will take pressure off your jugular vein(s) & which will open up the blood flow & restore your mental function & help rid you of the other symptoms over time.
I feel for you! What a miserable way to live. Hoping & praying you’ll get the help you need soon!
Thank you so much for the reassurance. I really appreciate it.
My neuro is being really supportive but this is not in his remit, so I am under Mr Axon now.
My neuro said that jugular compression is controversial and he doesn’t necessarily believe it can cause issues. But he will support me.
I was on the list for a ctv but I rang yesterday and head of radiology took me off the list, as it’s not life threatening, they do not deem it as urgent. So to have it on the nhs I would be waiting months and months.
My only option now is to pay privately. Which I will do as I can’t go on like this.
My Doppler results show high velocity, only in the mid right vein. So I am worried this will not be classed as pathalogical, however my jugulars go down to 1mm and 1.5mm in the mid section which I am led to believe is very narrow. Left side is 1mm (40cm flow) at c1 and right side at c1 is 3mm (130cm flow)
I’m not sure if my styloids are involved as I’ve never had a ct scan but my mri clearly shows bilateral compression from the c1 transverse process, right side is more significant.
I’m just so tired of constantly having to advocate and pay out for help. How sick do you have to be until a medical professional takes charge and helps. I always feel like I’m guiding them and pushing for further testing etc
I really appreciate you reaching out. Thank you
I have pm’d you too…I wouldn’t pay for a CT as Mr Axon does like the CT with contrast done his way- not the side on view like your pics, but from the top of the head travelling down. So maybe not a bad thing yours was cancelled if you were having it locally as it might mean 2 tests close together, so more radiation.
If you’re going to pay out for anything, maybe it’s worth paying for a private consultation with Mr Axon, but state that you want your treatment on the NHS. He does private work at the Spire Lea hospital in Cambridge. You’d get a little headstart on the queue…I know we shouldn’t have to pay, but the waiting lists were bad enough before Covid! Mr Axon is very familiar with jugular compression caused by the styloid processes, so don’t worry that he would think it’s controversial.
I’m not very knowledgeable about flow rates, maybe others can comment on that, but the narrowing seems pretty severe to me!
I don’t know whether the Neuro would otherwise consider testing the pressure inside your skull; that might show that the level of pressure is controversial? Although that’s not without risk…Mr Axon considered doing a lumbar puncture with me to determine the head pressure, & depending on what the CT showed, but as the reason for the IH was obvious with the styloid compression, he felt it wasn’t necessary to do, have to admit I was glad!
Mr Axon has worked with another surgeon when one of our members had elongated C1 processes causing compression, so I’m sure he’ll address that with you if that’s the issue- I might’ve mentioned that before.
Thinking of you…
Thanks for your message. The ctv will be under me Axon at Cambridge. I’m just going to have pay privately for the ctv as their waiting
Lists are really long.
I’m so glad you found treatment with Mr Axon and you didn’t have to have an LP. That is something that I do want to avoid if possible.
I’ve never seen my styloids on a ct scan so I’ll be interested to see if they are long or angled.
The only image I have of my styloids is on an opg nearly 3 years ago. They don’t look that long but maybe the angle is inwards.
I really appreciate all of your feedback and knowledge.
I agree my vein Diameter compared to many is so narrow. I’ve seen people with average of 6mm at mid level and mine is 1mm and 1.5 And that is in neutral so any smaller and there is no vein left
Hopefully mr Axon can help me
Hi Natty04 -
I’ve annotated one of your images w/ an arrow pointing to what I think is your styloid. It looks a bit long to me & potentially involved in the jugular strangulation.
Just seen this for some reason. Thanks so much. I didn’t even know what I was looking for. Can you see my styloids on any of these images? Thanks !(upload://qJ12xp5OXkgMarJnjP3TmEfqYwG.jpeg)
Honestly, I’m not positive that what I marked is your styloid process. It’s the right size, angle & in the right area to be that, but there are so many structures in that area of the neck, I just made a sort of educated guess based on experience not medical knowledge. The bottom picture is taken from the back side so I can’t see anything that looks like styloids. If you had an image like that but from the front, it would be possible to see them. In the image next to the one where I identified the possible styloid, there are several possibilities, but since I’m just not sure, I didn’t mark anything. I’m sorry not to be more helpful.
I’d say the structure marked with the arrow looks more like an artery full of contrast. It’s an MRI scan after all, which usually doesn’t show bone structures so clearly as they can be seen in the pics.
Just a quick note to say that you’re not going mad and I know exactly what you’re going through. After 2 successful surgeries in 2018, I am now free of all of the symptoms you describe. (It’s so difficult to describe them, isn’t it!) I was undiagnosed for 5 years and under a neurologist for most of that time, who initially diagnosed intracranial hypotension, because of the severe and constant headaches. It’s a long story (as everyone’s is with”Eagles”), but I had the left styloid removed, which gave me almost instant relief from the terrible headaches and other pain and then the right styloid removed 6 months later, which relieved the vascular symptoms within the next few weeks or so. 18 months on and I’m like a new person. It’s quite amazing, going from suffering so much, with no one having a clue, to, feeling well and “normal”. I hope you find some encouragement in hearing a bit of my story. I so hope you get sorted very soon. It sounds as if you’re going in the right direction. This forum is brilliant and Isiah and Jules are fountains of knowledge. Their help and encouragement made a huge difference in my life and I know they are there for you! Wishing you the very best!
Aww no worries. Thanks for taking a look. Really appreciate it
Will see what the ctv shows. I’ll post on the group I’m sure, once I have the results.
Thanks for all of your support
Thanks so much for reaching out and such great news that you are re-born again I bet you are on cloud 9
Really gives me hope!!! So thank you.
Seems like a long journey for most before they are actually listened too and on the right track.
When I didn’t know that the noise and feeling I was trying to explain was “whooshing” pulsatile tinnitus. I must of described it to 2 neuro’s and 2 ent’s and they looked at me gone out. I said at times when I stand quickly or move a certain way I get a rise in pressure up my neck to head, like a river trying to squeeze through a pin hole then I hear voomp voomp. And they looked at me like I was an alien.
I’m sorry you experienced so much pain. I’m not in constant pain but more of this sucking, aching pulling feeling in my eyes and neck and brain feels numb like something is inside but at the same time head/brain is empty with numbness like flow is being cut off.
The eye pulsing, visual disturbances, visual snow, floaters, tinnitus, transient hearing loss, black floaters, blocked popping ears, leaking nose, pulsing head pain at times and always this hurrendous spaciness is all too much at times. Brain fog, word finding difficulties, presyncope episodes. The more I lift, move and up down etc the worse it gets.
I was fit, active and healthy before this started. Hopefully I will have a success story like you one day.
Thanks again for giving me hope xx
Lovely to hear from you Pumpkin, kind of you to come back on to give encouragement…so glad it’s all going well for you still!