@DogLover thanks for your help with viewing the scans. I’ve been playing around some more. I can’t figure out how that person transformed the image you were asking about. Maybe it was on some other software?
I tend to have my most anxious moments whilst waking in the morning. By bed time I become so fed up and depressed that I’m eager to just close my eyes and disappear. It’s insane to think this level of internal suffering is even real. I just have to distract myself with constant research, which seems to be the only thing that keeps me somewhat sane.
Thank you for your wise words @Jules and @Isaiah_40_31 i’m trying my best not to over analyse. I’ll bring up all of my concerns to Dr Axon.
And I’m loving all of the animal pics
I’ve got some more angles of my left side compression. Which is the styloid I’ll be having removed first. Does the compression look significant enough?
And I’ve also found some other abnormality that can only be described as a baby styloid?! I think I must just be some ridiculous mutation at this point
I’m pretty convinced mine is a lot worse when I put my head down (I read one paper that suggested this was quite common) and possibly completely occluded in the upright position looking at an upright MRI I have, although I know the jugular vein is used less when upright it still presumably has an effect. I can also see indentation on the vein where it isn’t actually touching at the time of scan which suggests more compression in different positions; the same applies to yours too I think. Many people’s symptoms are made worse with head rotation too but without an upright, dynamic CTV we’re are never going to know. I guess we can only trust that people with our degree of compression have had the surgery and had good results from it.
This is interesting - this guy was lucky to get a diagnosis. (PDF) Moving target: Transient rotational stenosis precipitating jugular bow hunter’s syndrome (researchgate.net)
I’m so with you, the research is the only thing that keeps me going and stops me focussing on how s**t the whole situation is! It makes me feel like I’m moving forward rather than in some nightmarish groundhog day!
Wow! You do have some huge collaterals. Your body is definitely working hard at releasing the blood from your head! As awful as it feels, at least it’s more evidence pointing towards the cause.
Even though I have more than enough evidence, I still have to research and re read everything to assure myself I am on the right path!
And exactly! If I’m not researching and gathering as much formation as I can, I feel like I’m not moving forwards. If I focus on mindless entertainment, I get restless because I can’t exactly relax, so I go straight back to research.
Thanks for posting the study. Glad the guy had resolution post surgery. I wish there were more personal success stories outside of studies.
And I believe that this stuff really is more common, but it’s just under recognised and rarely diagnosed. For whatever reason, it’s easily missed. Are doctors just not trained in looking for something that looks pretty obvious?
Quick question, does this look like CSF build up?? Or is this something normal?
@DogLover oh cool. Yes I’ve been playing around with the scalpel, but haven’t chopped the top of my head off yet
I’ll give that a go. I’m not sure how to distinguish what the heck is happening up in my brain though lol.
Do you think dr axon will do a 3D render of the CT scan and analyse it like we do?
And thanks for sharing blossoms post. That’s good to know about the anxiety calming down post surgery. It probably is caused by the vagus nerve compression in conjunction with the high pressure, which makes it feels like extreme panic constantly.
Can I ask if you experience a lot of shaking/tremor? I can’t walk or do anything without shaking constantly. And my muscles feel so stiff and tight. Especially my legs. Just tense and shaking non stop.
I don’t think Dr Axon needs to do a 3d render. He only got my scan through whilst I was there and spent about 3 minutes looking at it and then advised he was going to remove styloid process as well as the atlas tip. I think he’s so used to looking at that area he just knows what to look for.
Yes I get really bad tremors especially in my right arm. Sometimes my legs give out so I look like one of the puppets on Captain Scarlet (you’re too young) with a very bad puppeteer in charge. My legs are sometimes stiff and painful and other times not too bad. My tremor comes and goes but is a sure sign I’m feeling really bad. My eyelids flutter and if it’s really bad my teeth rattle! My symptoms seem to come and go. At the moment my twitch is back - it’s all so attractive!
I’ve been trying to look round the site for some positive outcomes which I’ll share if I think they’re of interest. Oh and yes I find raising my voice makes me feel bad too.
I know Captain Scarlet! Well… I know the theme tune. My dad sometimes sings it. His favourite was Stingray. I used to watch it with him and he usually sings Aqua Marinas theme
But I can understand how you feel with the puppet legs. Mine wobble all over the place when I’m walking. If I get up too fast I just get the pulsing pressure in my head and have to try to balance myself or the dizziness makes me feel like falling.
And yep. Talking and raising my voice makes my symptoms worse too. The more I talk the more strangled I feel. So I try not to talk at all. Plus it makes me get out of breath too.
I’m not sure if it’s the styloids pressing against the structures and nerves in my neck. But when I’m laying on my side, it feels like my throat is collapsing on one side. And I get pressure behind my nose.
And thanks. If I find any success stories I’ll make sure to share too
Wow this thread is amazing. I have my scans on disc how can I get them uploaded and modeled on here to get some opjnions? I’m set for a double styloidectomy with Dr Hackman wanna make sure that’ll do the trick
There are vascular extensions such as SlicerVMTK extensions that may be needed to be downloaded. You need to go to the extension section and import all vessel extensions. Vessel segmentations tutorial can be found here (Overview | 3D Slicer segmentation recipes).
@Msdstc looking at your Styloids. They definitely appear long and makes me wonder if these are prior to the recent surgery. I have no doubt that they are severely compressing your jugular veins by just looking at the faint signal of them.