I’m new here, hello all!
I’ve had a bit of a long journey since my symptoms started and I thought this year after about 6 years I was on track. I’m worried now. I won’t bore you with the tedium, but recently dx with pots, heds, and Crohn’s. Borderline CCI. Very flexible head.
Symptoms got worse, constantly feeling like I’m walking on a boat, bad brain fog, voice changes, visual changes and constant tinnitus and pressure. Also burning hands/feet/legs.
So, I met the most amazing neurosurgeon in little rock (Dr capocelli) who ran a few tests and said I did have some low measurements but that my left ijv was compressed and it was likely styloid. He doesn’t do it so I was able to get an appointment 1/17. Yay!
Okay, so Hackman’s office did get my CT scan and did another interpretation and it didn’t say anything about my jugular veins or compression, and they were basically normal. Now I’m gaslighting myself and wondering if I’m going to waste my time and his time.
I will still go, but I’m less confident that it will work out I can share some images of my CT.
Welcome & thank you for posting your images. I’m really sorry you’ve received so many tough diagnoses recently. Excellent that you were able to see Dr. Capocelli. Finding a doctor who knows where to start & helps find answers is invaluable.
I think your appt. w/ Dr. Hackman will be worthwhile. I wouldn’t be too concerned that he didn’t mention your IJV compression as that’s something you can discuss w/ him when you see him. Though your styloids aren’t super long, your C-1 vertebra is rotated to the left & thus the space between the transverse process of C-1 & the styloid on that side is considerably narrower than on the right side. This means there’s a greater likelihood of IJV compression. Some members have found that the compression isn’t constant i.e. it’s much worse when the head is in particular positions i.e. looking up/down, left/right, diagonally up/down/left/right, etc. It’s also important to know that it’s not just the length of the styloids but the angle they’re growing, how thick, pointed, curved or twisted they are that can also play into what symptoms they cause.
Additionally, your symptoms are very telling of IJV compression so getting that left styloid removed should be very helpful in resolving the “walling on a boat, bad brain fog, visual changes, tinnitus & pressure.” The voice changes are probably from your vagus nerve being irritated & styloid removal should help w/ that. Some of our members w/ POTS symptoms have noticed they reduced or went away entirely once their styloid(s) was/were removed. Gastrointestinal issues can also be caused by the vagus nerve though not Crohn’s per se, but still, you may notice a reduction in your gastrointestinal issues over time once your vagus nerve has the pressure off of it.
Please let us know how your appointment goes.
Thank you for the kind words! I know many here are a bit sensitive to being gaslighted and may do a fair bit themselves because of it.
But I have a question, it the styloid is “normal” and it’s other structures that are causing the issue and the styloid is not the real issue…is it eagle or is there another name for it?
I can sympathise with the symptoms- the off-balance feeling is horrible! Hopefully getting the left side styloid removed particularly will help with those vascular symptoms, so I don’t think that you’re wasting time seeing Dr Hackman…I agree as @Isaiah_40_31 says your styloids aren’t the longest we’ve seen, but they do look longer than ‘average’, and the angle can make a difference too.
I’m not an expert at reading CTs- as @Isaiah_40_31 says, your C1 looks rotated, but not sure if that’s the way the CT was taken or if that’s an issue you need to get looked at too? One of our members, @Tomas10 has had surgery but has found he still has some symptoms due to rotated C1.
You’ve got quite a few issues going on & as @Isaiah_40_31 says, they may well improve with surgery too, but just be prepared that it might be a bit of a journey & maybe not everything will get fixed in one go
@JuliaM - I believe that Eagle Syndrome specifically involves at least one elongated styloid process &/or calcified stylohyoid ligament. There are other disorders that have very similar symptoms such as Hyoid Bone Syndrome. I know there are others as well. In some cases, the styloid process isn’t much to blame for IJV compression as the bigger culprit is the transverse process of C-1. When that is the case, moving the IJV a little away from the tp of C-1 is an option & another is to have C-1 shaved down a bit so it is less invasive into the IJV’s territory. In my opinion, shaving C-1 is the less desirable route but it is often the path of least resistance.
So, I had my appointment this morning and at the airport reflecting. He truly is a good doctor, knowledgeable and truly wants to help. I do appreciate that. He explained really well his perspective on this operation and I understand that many of his patients he says the same thing. That he doesn’t know why sometimes the surgery works and why some people have symptoms. He said my styloid were around 2cm, so not long, which I already knew. He will do my surgery but couldn’t recommend one way or another to go.
I think he also sees a lot of people like me, who’ve been bounced from one doctor and specialist to the next and have no other options. Which is where I’m at. I’m done. I feel like taking the risk that this might help, even in a small way, get my life back on track. I’m so tired of being tired and not being able to do anything I used to.
I’ve heard some suggestions to see upper cervical to realign c1, which could be compelling but I’m concerned about the fragility of my spine with eds and the location of the styloid. I’m also not getting any younger. If I delay surgery for the future there is also the risk I will be less healthy.
Too many decisions and not really a solid rock to stand on.
Edit to add: my head is always tilted to the left and I think I was in a weird position with my chin closer to my neck when the CT was taken.
I’m glad that Dr Hackman has said that he’ll help you, & that you found him very understanding. Will you have both sides done together, or just one?
My head tilts slightly to one side yet I’m pretty sure my atlas is aligned ok. There can be other factors that influence head tilt like muscle imbalance i.e. one side of the neck is stronger than the other. I suspect this is more of what’s causing my problem.
Ah good to know! Do you happen to know what to look for in the scan for the c1 being off balance? I googled and couldn’t really figure out.
If you have an image that shows your skull & cervical spine from the back, that would give you the best view of your C-1 vertebra. If it’s sitting at an angle as opposed to lying more perfectly horizontal, that can be an indicator that it is off kilter. Bear in mind that the position of your head during the scan can give a false impression of the C-spine being misaligned. If you know you were lying perfectly aligned during your scan (i.e. your head was in neutral position as opposed to looking slightly left or right) & you see C-1 tilted in the image, there’s a greater chance it has a problem.
Here’s a link to a thread w/ a video about one of our members, @jteleia, who has big problems from her C-1 which were helped somewhat by an atlas orthogonal specialist. Still no resolution - #3 by KoolDude
I’m not very sophisticated with the 3d software, but here are some of the CT images. Part of my hesitation with the AO chiro (outside EDS) is that neither doctor (NS or Dr H) mentioned it being misaligned and they’re both pretty good docs. It also doesn’t look like there’s much room on either side to make up the difference, so an adjustment on one side would squish the other more? Perhaps I’m not understanding the adjustment process well?
Also to note that when I did a trial of a hard cervical collar per my NS, my symptoms were greatly diminished including tinnitus, brain fog, and I could watch motion on screen without pain. Not sure if that helps or not.
Looking at your images, your C-1 vertebra looks level, however, it also looks like it’s very slightly rotated to the right i.e. the left transverse process is slightly more toward the back of your body & the right tp is slightly more toward the front of your body.
IF I am correct, even that little bit of rotation could be increasing your symptoms/causing more significant compression of your IJV(s). I would assume that an AO chiro could help rotate the C-1 back into a more normal alignment if it is indeed out.
Please remember, I’m not a doctor so I could be totally wrong about this. In my opinion, it’s worth asking about. Sometimes, even the best doctors don’t notice subtle things on CT/MRI scans when they are outside of the range of what’s specifically being looked for.
@vdm, @KoolDude or any others who are good at looking at images - please give an opinion. Thanks!
This has a good tutorial about using 3D software, and rendering 3D volumes to start with
Just reading through this and i feel my c1 may be rotated and the major cause of my symptoms as well. I am not sure my styloid is significantly long.
Did you check this?
I did check the link & honestly, I’m still in the learning process for reading dicom uploads & not exactly sure how to see all the images that are loaded when I click on a person’s link. In the image I looked at, your C-1 was perfectly level & didn’t look rotated. It’s image 3/1. If you can create a 3D image to post that would be helpful (sorry I don’t know how to do that either but I aim to learn).