Hey all! After a nightmarish journey through the depths of my insurance company, I finally have a CT scan. I set it up in Slicer but I have no idea what it means & won’t hear from anyone about it for a while. Here they are…
It looks to me like there’s a breakage in the bone there. Could this be an error in the imaging? The pain is more severe on my right side so I wouldn’t be surprised if it was broken. It also looks like it’s compressing whatever mass it’s up against.
Left side:
The left side looks longer than the right side. I’m not sure if it’s long enough to be considered “elongated” though. It looks to me like it’s possible it’s irritating the stuff around it (those aren’t arteries, are they? Lol, going to do some anatomy research after posting this.)
I’m curious if anyone more informed than me has an any insight on what to make of the scan. Also, I want to thank everyone who contributes to this site for all the helpful info!!! <3
There are others (Kool is expert) here than give you more of a read on these scans. Styloids look pretty darn thick to me. Im not a good judge on length. 2.5cm or above is considered Eagles territory if symptomatic. As to what appears to be a breakage, its likely continuous and not what they call “segmented” as it appears on the screen. Dr. Samji explained to me that MRI’s are taken in slices and the software interprets what is in between the slices. He also said he has found the calcification and/or styloids to be longer than what is displayed because of the slices used to produce the image. Its not much info but some. You will get more feedback from others who are good at reading these.
Ah okay, that makes sense about the possible false segmentation. I also read from someone on here that sometimes they look like that because only the calcified part of the ligament is visible on a scan. Thanks for your thoughts.
Well, I am not a doctor, but it is really hard to conclude anything from a few 3D slices without thoroughly examining the whole CT Scan but it can give us some clue on the areas that might need further investigation. On your right side Jugular vein, which appears to be the dominant jugular vein, appears to be compressed by C1(Red arrow) and Styloid (Green arrow) . I really can’t tell whether the Styloid was broken or there were some calcification that formed without attaching to the Styloid stub ( see the second image 1st Green arrow) but what is important is that your compression needs to be investigated further as I can see dilated collateral (Cyan arrows) veins along your vertebral bone. What the collateral flow indicates is that the jugular vein is somewhat impaired and the blood has to go to an alternate route.
On your left side, the jugular vein appears to be non-dominant (small by birth) and it appears to be compressed by C1 (Cyan arrow) only. The Styloid (Green arrow) on this side is longer as you have noted but it has no compressing effect on the left jugular vein, at least from what I can see on these limited images. Since it was small to begin with, its effect on drainage might not be as profound as your right Jugular Vein so decompressing your left Jugular Vein will not yield a meaningful gain of outflow improvement compared to the right (Not doctor again, my opinion). It is possible that the elongated Styloid process is messing around with your cranial nerves and potentially causing other symptoms but that is not usually seen on CT Scan so I can’t really say.
Do you have intercranial hypertension symptoms, such as headache, tinnitus, vision issues, neck & facial pressures, brain fog…etc. Which side do you feel most of the symptoms, right or left?
Hey! Thank you for the response. I really appreciate how adamant y’all are about seeking real, professional opinions; I think that’s super important to emphasize in places like this. I’m waiting for a response from my current ENT doc & will be scheduling a consultation with a specialist on Monday. Here are some answers to your questions though.
Yes! I have had these issues for years & failed trials of migraine/seizure/pain meds. Here are some things I’m experiencing:
Visual
I have a constant layer of visual snow over everything I see. I get migraines with aura that follow classical migraine patterns sometimes, but get auras alone a lot too. The ones that don’t precede a migraine come and go pretty quickly. I often feel pain in my eye socket area when I move my neck around.
Facial
Numbness & twitching. The tip of my tongue gets this numb/tingly feeling a lot. Sometimes it’s the lower half of my face too. My eyes and the surrounding areas twitch a lot.
Neck/pressure/tinnitus
My neck is always super tight & tender, ESPECIALLY around the sides of the C1, and right underneath it. There’s tenderness around my eye socket/eyebrow area a lot too. I haven’t been able to fall asleep on my back for years because my head starts pounding/whooshing if I do. I also can feel my heartbeat in the back of my head a lot of the time. I can mostly ignore it but it sometimes gets more intense for short periods of time, like around a half minute here and there. I hear a lot of high pitched tinnitus type sounds as well.
Hypertension
This is actually what prompted me to start pursuing a diagnosis again recently. I was having these weird bouts of intense vertigo this summer that seemed to come out of nowhere. I would start feeling super lightheaded, almost like I’d smoked a little weed or held my breath for a really long time, and then would get super dizzy for maybe a few hours. I’m not usually phased by things like this, but I was genuinely pretty scared when it started happening. I also get this way when standing up but less severely & it doesn’t last that long.
Brain fog
Yes, I experience a lot of this!!
I want to say the right side is more consistently painful. It feels like it’s interfering with my speech/neck muscles more. But sometimes, like right now, the left side is way more painful.
I have some follow-up questions for you if you don’t mind:
I’m curious how you can tell the veins are dilated, or rather what makes you suspect that they are-- are you comparing their size to a reference CT scan, or are you familiar with the average look of them?
Do you know how this is usually investigated further?
I just want to say I’m sorry for all you’re experiencing & the hassle you’ve had getting your scan done. Some of our members who have/had IJV compression have found sleeping w/ their heads elevated helps relieve symptoms. Another thing that has helped some is taking a blood thinner such as Plavix. That can usually be stopped after the IJV compression is relieved.
@blistle Well, based on your symptoms and limited imaging you provided, I can safely assume, you are suffering from Internal Jugular Vein Stenosis (IJVS) symptoms. This, I think is due to compression of the Styloid fragment on your right IJV and since your left IJV is small and is also compressed by the C1, it can’t compensate it. I think your symptoms are so similar to mine (see here Visual snow and floaters - #4 by KoolDude), no surprises there because your IJVs are like mine, just the opposite. I have smaller right IJV and dominant left one which is compressed by the Styloid & C1.
We can tell the collateral dilation by looking at their sizes. In a normal Scenerio where Jugular vein is fully open, they will be just tiny vessels and will not be prominent. Also, there is a network of veins that attach to the Jugular vein (primarily condylar veins) at the base of the skull and it is called Sub-occipital Cavernous Sinus (SOCS or SCS) or Sub-occipital Venous Plexus as it is sometimes called. It serves as the bridge where the Condylar veins (from Jugular vein) connect to Vertebral Venous Plexus (VVP) which is an alternative path for draining the brain/spinal cord mainly when you are upright but usually do not drain when lying in supine position. Since you were lying down in supine position during the CT Scan, that is when your jugulars primarily should be draining your brain. But in your case, they are impaired so blood gets rerouted to collaterals (Condylar Veins) via SOCS which is swollen (see the blue circle - what appears to be a tumor at the base of the skull is the dilated SOCS) in your case due to over-drainage from impaired right IJV and finally to VVP (Cyan Arrows) which is also bit dilated visibly. You can read more on collaterals on this study (https://www.frontiersin.org/articles/10.3389/fneur.2020.00913/full) if you want to learn more
Here is the dilated SOCS (Blue circle with arrow) and dilated VVP/deep cervical vein (Cyan Arrows) indicative of impaired Jugular vein or as it is known Internal Jugular Vein Stenosis (IJVS).
Here is an internet image to show you how the jugular vein interconnects to SOCS or as they call it in this image Sub-Occipital Venous Plexus (SOVP) which is the same as SOCS.
Here is another image from a study that compares lying down (supine) versus upright jugular drainage. You can see where the SOCS is on this one. See how prominent the SOCS become when upright versus when supine. So you should not see dilated SOCS/Collaterals in supine position is the take away here, if you do, that means your Jugular vein is impaired.
One final note, the muscle tightness and weaknesses are thought to originate from the dilated collaterals/SOCS which can cause compression or venous hypertension on spinal cord which then can can cause muscle weaknesses/tightness…etc. You and I fit this. In extreme cases, it could potentially mimic myelitis cause paralysis on all four limbs.
Well, I think you need to do Dynamic Catheter Angiogram/venogram with manometry to quantify the degree of narrowing on your jugular vein. This is not necessary though if you have capable ENT Surgeon that is familiar with Vascular ES. I would recommend you to contact Dr. Hepworth who is by the far the best for Vascular ES involving Jugular Vein. He also does the Catheter Angiogram/venogram before operating on you. Do not waste your time with ENT folks who lack the knowledge of this rare disease. They will give you the run-around and dismiss you. You can save both time and money by contacting the right ENTs who operated multiple folks with the same IJVS. Dr. Hackman is another good ENT surgeon. You can also follow the advice of @Isaiah_40_31 regarding mitigating the symptoms of this while seeking intervention.
On finale note, I am pretty sure you have IIH signs but I would like both the CT and MRI (If you have one) to examine. There is a free anonymous site where you can upload the images. This site (https://www.dicomlibrary.com/) will strip all the identifiable fields before uploading the images and it is good way to share all types of imaging. The only downside to it, it takes long time to upload if you have slow upload connection. Also if the CT/MRI is way too big. But you can also share individual slices like Neck CT sequences only instead of the whole CT. There is also tutorial on the site on how to upload and share it. This is optional. Only if you want me to give you more raw CT slices pinpointing where the compressions are on the right IJV.
Thank you for all the info! I’d be happy to let you take a look at my scans. Uploading the zip to that website now. I’ll send you the link when it’s finished.
@blistle I have quickly went through your CT images. I have not looked into it deeply yet but my preliminary finding basically confirms what we have seen on the 3D images but I now believe the C1 is compressing your right dominant IJV more than the Styloid fragment is. From what I can observe, the C1 is basically collapsing your right IJV severely that it is sometimes barely visible. On your left non-dominant IJV, I can confirm that C1 alone is compressing it and Styloid has no compressing effect on it. I have chosen raw Axial & Sagittal slices as most of the doctors prefer these images over the 3D rendered ones. So you can show these slices to whoever you happen to see for potential operation. I think your case would require shaving the C1 as I happen to think that removal of the Styloid fragment alone will not decompress your right IJV (not a doctor, my opinion). Most of the ENT surgeons do only Styloid so I really do not know who can do the C1 as well. I think I heard Dr Michael T. Lawton in Phoenix Arizona being mentioned as one who does the C1 as well but @Jules or @Isaiah_40_31 can correct me as they are upto date with list of doctors.
Here are the Axial slices showing your right dominant IJV & left non-dominant IJV compression. IJV (Green arrow), C1 (Red arrow), Styloid (Cyan arrow) and Collaterals (Blue arrow).
Here are the Sagittal slices showing your right dominant IJV (first 2 slices) & left non-dominant IJV (last slice) compression. IJV (Green arrow), C1 (Red arrow), Styloid (Cyan arrow) and Collaterals (Blue arrow).
I’m not sure who in the US will shave the C1; I’ve had a search through the discussions, but found conflicting info- there was a mention of Dr Ferdinand Hui of Hopkins, but then the post said Hopkins are no longer doing the surgery…I can’t find many mentions of Dr Lawton, other than he did one case but seems to have been picky with who he takes on since then…
I guess I’ll just have to call around & get many opinions. I’m sending the scan to Dr. Cognetti in the mail & will update this thread as I get new info.
Well…I think you need to consult with whoever can do the C1 as well. I am not sure Dr. Cognetti or Hepworth or Hackman do the C1 shaving but won’t hurt consulting with them. From what I was able to observe, I am positive that you are indeed suffering from severe right IJV compression by C1 which will no doubt cause IIH symptoms and some weird related symptoms to over-drainage by the collaterals. The compression ratio is like 75%-85% from C1 and 10%-15% from the Styloid fragment.
The good news is, it is not mystery anymore. You know the culprit.
I forgot to mention another doctor called Dr. Peter Nakaji who is also in Phoenix Arizona who has done a number of C1 shaving along with Styloidectomy. He is currently at banner health,
see this link (Dr. Peter Nakaji, MD - Phoenix, AZ - Neurosurgery - Book Appointment). He co-wrote the article below regarding 10 patients who went through C1 shaving & Styloidectomy who mostly have their symptoms either disappeared or improved after the operation. You can read it below.
