Thanks all for your support. From reading lots of people’s experience on here, I’ve asked my GP for eliquis / apixaben today which he actually agreed with despite it being “off label”. He agreed it would be diagnostic as to whether my symptoms are predominantly blood flow based rather than neurological.
My suspicion is my symptoms are all very much blood flow based, and it makes the most sense in my head that it would be outflow from the brain being obstructed as I’m feeling head pressure.
Unfortunately symptom have taken a nose dive in recent days so I’m hoping I may get some relief from the anticoagulants.
Have to wait for my MRI results before GP will consider any referral, so I think I may bite the bullet and pay for some private consultations.
Been looking at options, Mr Axons secretary said I couldn’t send my CT to them over the internet weirdly, which means a remote consultation is out of the question!
Yes most wont accept your CT electronically as they typically use clinic computers which means they dont open external files that arent sent internally through internal portals or requested directly by them.
I would suggest if you are able to, go to the consultations in person. My feeling is doctors are more likely to treat you as a person rather than a set of images if they see you.
I’d say slow down a bit. I have loads of the same symptoms as you and some of the symptoms others have described. Mine all started in Dec 2021 after a neck injury and I was a right mess mainly from googling and there was a certain USA based website that made things a lot worse to the point where I ended up in a mental health unit because I was so convinced I had CCI and wanted to end it all. No one listened and said I was crazy. Eventually in April 2022 I went to Medserena and had my very expensive scans and although some of the results were “borderline” and I have all of the symptoms Patient D describes above (head tilt, hip hike, one shoulder lower than the other), there was no real sign of any instability or anything pathological despite all of these symptoms. In the end I had to calm down and over the last 2 years a lot of symptoms have disappeared and only the eagle syndrome/ENT symptoms have remained. Quite a lot of my symptoms I think are attributed to bad posture in my shoulders and thoracic spine (there’s a really helpful post on this forum about this), breathing pattern disorder, panic and anxiety, constantly looking at my phone ruined my eyes and caused double vision, even though I couldn’t see this in the beginning and most of it caused by looking down at my phone googling all the time and panicking about what I was reading. I have a follow up with Dr Hughes in London at the end of the week, my scan shows “discontinuous calcification” but I have a feeling this isn’t going to be enough to explain my symptoms or to have any kind of surgery at this stage. If you have this view from your scan you can usually see CCI (although there are other views and lots of measurements). This is my scan.
I hope this is helpful and please don’t Google anymore, stick to the professionals in the UK.
@Skatkat Sorry to hear about your really difficult time, mental health related. It’s all really scary stuff, and when theres no clear help around and lots of wild information on the internet it is really scary.
Do you have any scans of the discontinuous calcification, i had been looking at mine and can see my styloid doesnt seem to attach to my skull on my left side where most f the symptoms are. So just curious to see what that looks like.
I had a CT scan done but there are lots of pictures and nothing that I can see on the scan that really shows it, unfortunately I don’t know what I’m looking for and it’s not that obvious compared to everyone else’s scans. I have my follow up on Friday so I’m hoping to get more info then and go through the scan, if it becomes any clearer I’ll post the pics on here.
@ LimeZest - discontinuous calcification i.e. calcification disconnected from the styloid process, especially by a significant gap is usually calcification of the stylohyoid ligament alone. We’ve seen this among our members i.e. normal styloid then a gap then significant s-h ligament calcification. The symptoms are mostly the same whether the styloid is involved or not. Also, the stylohyoid ligament can calcify in short sections which looks like a dashed line along its length.
In a few cases, an elongated styloid has actually been broken but that scenario is fairly clear since the pieces stay pretty close together & there are no significant gaps between them, just small spaces.
@Isaiah_40_31 Thanks for the great explanation. I will try to post some pics of my scan to show what i mean when i get a minute. But for me it looks like there is a gap in the styloid quite close to the skull, cant tell if its an artefact of the scan though, but there are no other gaps anywhere else so seems odd.
@Isaiah_40_31 thanks for your explanation of discontinuous calcification. I’ve made some cuts in my scan (dont worry half my face isnt missing ) to show you what i meant by the gap in my left styloid. Wondered if you had any thoughts on this?
It could have either been fractured, or a short styloid process & the ligament has calcified further along- there’s no way to tell from the scans which it is, & ultimately it doesn’t really matter, as either way it can cause symptoms…
Thank you @Jules, was mainly curious because i feel like i have mainly vascular symptoms on the right side, but neurological ones on the left, which is a bit bizzare…
Could well be compression on the right- quite high up perhaps where the IJV exits the skull base, but maybe the left side it’s catching/ irritating nerves by it’s angle (or if it is a fractured styloid it could be moving about). It’s not uncommon for styloids to grow at different angles & therefore affect different nerves each side.
I think this is what my scan looks like, I only have the 2d version & it’s online and I can’t download the images, but I’m pretty sure that if I made my images 3D it would be really similar. I have my follow up appointment tomorrow, I’ll let you know the outcome. From what I can remember from previous posts I think we had similar symptoms.
I just read your blog post and we literally have exactly the same symptoms and a really similar story, I feel like I could’ve written it myself. Fingers crossed we get some answers soon.
@Skatkat fingers crossed we both get sorted! I had a look at your MRI scan and actually wanted to congratulate you on how well you’ve looked after your neck . Great lordosis and no disc bulges from what I can see.
It’s not a surprise we both went down the CCI/AAI route. And agree that there are certain websites that make this so scary.
I agree w/ @Jules on all accounts. Your right styloid looks like a dagger of sorts & the very pointy tip is quite close to the transverse process of C-1 plus the upper part looks a bit thick as well. Because of the size of the space between the left styloid & the longer section of calcification, my first guess would be that the styloid is normal but the s-h ligament has calcified, however, there’s no way to tell for sure if that longer section of calcification was once part of the styloid. Regardless, the tip of the left calcification is pretty far from the tp of C-1 on that side (at least the angle of it in the image looks that way) thus your IJV on the left has more “breathing room” so is most likely not being impacted.
Thanks @Isaiah_40_31 yes so the left styloid/stylohyoid ligament calcification is about 4 mm away from the C1 TP. But the right one is 1.2 mm away. It has a strange angulation that almost looks like a groove for the IJV. We will find out more once I have the CTV done though.
I’ve had this full feeling for my 5 years in my right ear. Almost like I want to cut something out to release pressure. Quite scary to have a dagger shaped object so close to the IJV, carotid artery and vagus nerve .
He does the gentle adjustments with the AO tool. I go out of alignments sometimes unfortunately. Trying to work on overall posture and pelvic tilts to see if that helps support overall alignment from the top
) to show you what i meant by the gap in my left styloid. Wondered if you had any thoughts on this?
. Great lordosis and no disc bulges from what I can see.