Other members have been prescribed plavix which seems to have helped…
I don’t know whether Dr. Peter Nakaji (755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy) would be any good for you, a bit nearer than Dr H, I don’t know how booked he gets. You could have a search of the past discussions to see what others have said about him.
I think if I remember right it’s been mentioned in another discussion that Dr H likes the testing done a certain way, so not sure if you were going to hang on for him whether it’s worth trying to get more testing done?
Dr. Costantino’s name has come up on this forum a lot recently. He is a vascular ES specialist in NY & does video consults for out of area patients. He would be another doctor for you to consider as you work toward getting a diagnosis, @jrodefeld.
1 Like
Thanks for all the help and suggestions.
I remembered that I never took a look at my most recent CT scan that was done at OHSU in Portland a number of months back. So I asked them to send me a CD in the mail.
I loaded it on computer and first looked at the regular images, then loaded the images into 3D Slicer to make a 3D model. It seems very clear to me that there is severe compression on my right side.
Here are the images:
Left Side (regular CT):
Right Side (regular CT):
And here are the 3D Slicer images:
Left Side:
Right Side:
There’s no question about the MAJOR compression on the right side, yes?
I chose the “CT-Coronary-Arteries-3” preset. I’m not very good at anatomy, but is the vasculature picked up by 3D Slicer the carotid artery or jugular vein? The CT was called a “CT NECK SOFT TISSUE WITH CONTRAST”, so it wouldn’t capture the vasculature with as much detail as a CT Angiogram or Venogram.
Still, whatever is being picked up is being pinched down to nothing on the right side, unless I’m misreading these images.
I would really appreciate some feedback from the wonderful community here. I had several brain scans recently (CT and MRI) that came back “normal”. It’s hard to believe they couldn’t find anything given how awful I feel and how poorly my brain seems to be functioning.
Anyway, the bit of good news is that I did come across a local chiropractor who focuses on upper cervical problems. I had a consultation with him and was very impressed. He knew about Eagle Syndrome and the potential for the atlas to compress the jugular veins and arteries, not to mention the brain stem. He uses a technique called “Atlas Orthogonal”. Since I am so convinced my problems are primarily coming from my atlas, I’m hopeful he can help me. Even if he can’t, he may be able to help me get some more imaging to better evaluate the veins and arteries that may be affected.
Interested to hear what you all think about these images.
2 Likes
It looks from your scans that your left IJV is dominant. I made this judgment based on the apparent width of the left IJV compared to the right side. I agree that your right appears to have significant compression that’s predominantly caused by the transverse process of C-1, however, the right styloid also appears to be contributing to some degree as well. Based on this information, I think Dr. Costantino would be a good choice if you decide on surgery though a consult w/ Dr. Hepworth would also be worthwhile.
We have some members who’ve been treated by AO chiropractors & have had their C-1 vertebral position changed but this can only be done to a very small degree. I don’t think any of them received vascular compression relief but perhaps did get some relief from neck pain/tension. You can search AO chiropractor using the magnifying glass icon in the upper right of this page. Here’s one link:
1 Like
Thanks for the response.
I’m going to try and get on a video chat with Dr Hui in Hawaii. My primary doctor referred me, but I need to send them some of my imaging to review first. The good news is that they are not booking out too far, the receptionist said I should be able to schedule within a month after they receive my images.
I think he’ll have a lot of the answers I’m looking for. If I opt for surgery, I wouldn’t mind flying out to Hawaii for the procedure.
If the choice was between Dr Hui and Dr Hepworth, is there any reason to prefer one over the other for venous-compression Eagle Syndrome surgery?
I’m actually very much looking forward to seeing the Atlas Orthogonal chiropractor. I was very impressed with him during my consultation. He seemed to understand the role of the atlas in compressing the veins and arteries in the neck, and he also explained how a displaced atlas could compress the brain stem and affect the cerebrospinal fluid dynamics in the brain.
He seemed to take a more comprehensive and integrative approach than most chiropractors in his emphasis on imaging and correct diagnosis. He works with others in an office who do body work and other modalities than can compliment the atlas adjustment.
Even if the AO adjustments don’t help much, I feel he’ll be a really great advocate for helping me get the imaging I need and the surgery I may need. My first actual adjustment is this coming Tuesday, where he’ll do imaging followed by an Atlas adjustment. Then he’ll follow up with another appointment 48 hours later to assess how I’m doing.
Hoping for the best anyway.
I found another study that I thought was interesting. It’s titled “Evaluation of the Cause of Internal Jugular Vein Obstruction on Head and Neck Contrast Enhanced 3D MR Angiography Using Contrast Enhanced Computed Tomography”
https://synapse.koreamed.org/articles/1011828
In the article, they talk about the findings of jugular vein stenosis and how they correlate to distance between the C1 Atlas transverse process and the styloid process.
In the article, the median IJV diameter of the obstructed veins was: 1.6 mm ± 1 mm, meaning the range of the obstructed veins was 0.6 to 2.6 mm.
The control, or unobstructed side veins had a median IJV diameter of: 5.1mm ± 2mm, meaning the range of the unobstructed veins was 3.1mm to 7.1 mm.
The median distance between styloid and C1 in compressed side was: 4.1mm
The median distance between styloid and C1 in unobstructed side was: 7.8mm
I double-checked my CT and MRI scans for my measurements.
Here is what I found:
Left side IJV diameter: 5mm
Right side IJV diameter: 1.9mm
Distance between styloid and C1:
Left side: 7mm
Right side: 2mm
Here’s my MRI that shows the jugular veins:
Left side:
Right side:
I also worry that I may have a clot in my right jugular vein. Is this something I can check myself?
I have this MRI, as well as a CT with contrast. I also have a CT venogram, but that is only of my brain, it doesn’t extend out to the jugular, but it does show the transverse sinuses and the rest of the venous systems in my brain.
Does anyone have an example of what a jugular vein thrombosis looks like on MR or CT imaging so I can compare?
1 Like
I know most of us are amateurs here, so interpreting medical images can be a challenge.
However, I’m wondering if anyone would be willing to tell me if the following image could possibly show evidence of a clot in my jugular vein:
I made an animated gif since it can be tricky to judge based on one standalone image:
I really don’t know what I’m looking at. I can only say that it feels like what I imagine a clot would feel like. I don’t know how else to describe it.
2 Likes
I’m sorry I can’t give an opinion about the clot, but I can about Dr. Hui vs Dr. Hepworth. I believe Dr. Hui only does stenting as he is a neurointerventional radiologist. Dr. Hepworth is who you’d need to see for styloid resection & work on reducing the right TP of C-1 or moving the IJV away from it to decompress your IJV. A stent wont help if the cause of the compression isn’t removed first.
2 Likes
It is hard to conclude from animated or static images whether it is clot or not. One needs to examine the MRI thoroughly even then it needs to be established/verified with additional imaging. Many things can mimic clot.
5 Likes
Thanks for the replies. I may be just paranoid about the possibility of a clot, though I have been living with what seems like a heavily compressed right jugular vein for years now.
I didn’t realize that Dr Hui doesn’t perform the surgery. In any event, I sent off a package with all my images so I should be able to get a video consult with him within a month. I’m sure he can point me in the right direction.
As far as doctors who are both considered experts in vascular Eagle Syndrome, and actually perform the surgery, I know the names of Dr Hepworth and Dr Constantino. Jules brought up Dr. Peter Nakaji from Phoenix.
Are there any other doctors I should be aware of? Ideally, I’d like someone who can do a virtual consultation or a phone call before I book a physical appointment.
I have my first appointment with the AO chiropractor on Tuesday. I have high hopes that he may be able to help me. I have a long list of symptoms beyond “just” jugular vein compression and I suspect that the doctors I’ve seen haven’t appreciated the role a subluxated and rotated atlas (and possibly C2) has played. Maybe if I can get the atlas correctly positioned, and relieve the pressure on the jugular vein, I could avoid the need for more surgery? Given I already had styloid surgery and my styloids are now “normal” length (about 2cm each side), this indicates that the primary agent of compression is the atlas.
2 Likes
@jrodefeld Great job with all the images
I think you’re on the right track with the AO doc, I saw a similar type of upper cervical chiropractor.
The assessment and X-ray analysis I received from my chiropractor was really telling of the c1-c2 and heads relationship
It showed in my case the the c1 was turned to the right and also tilted up on the left, creating compression on my left side.
My adjustment I felt dizzy getting up but no reel perceivable difference, but the second visit I noticed a huge improvement in the way I stand and the way I walk. I felt very planted when standing and not off balance like usual.I could bring back my arms with a breath and there was no tension between my shoulders blade and upper back.
He is a NUCCA chiropractor and does a very soft style of adjustment. More like a gentle rub on one side than the other. He said total treatment is about six months for it to get a good set then just once a month maintenance.
All of that aside I still had the headaches,major tinnitus, sudden vision bluriness,etc… and had only seen him for a month before going in for styloidectomy and calcified ligament removal with Dr Hepworth.
I plan on going back as well after healing. For my overall body this felt like something I really needed and responded to well.
As I feel this will help create more space for the IJV and hopefully prevent the need to also have a c1 shave.
I also second waiting on the LP unless absolutely necessary. I had a bad experience, that took going back to the hospital twice to repair leak from a traumatic puncture, major brain sag and hypotension headaches were the worse.
Dr Hui had given me Plavix and that had made a big change for the better in head ache frequency and brain fog. It did not take them away completely, but I could finally think more clearly and lessoned ear and eye fullness as well. That was a major intervention that allowed me to be more productive before the surgery, and just better tolerate my symptoms.
Did you end up getting a recent CTV dynamic scan?
Also do your have axial views as well
I really hope your AO experience goes great this week
And that you can get some well deserved relief soon
2 Likes
Dr. Costantino does video consults for an initial appt. Dr. Hepworth won’t do a video call until you’ve been seen in his office by one of his NPs for the first visit.
I hope the AO’s adjustments to your C-1 make a big difference for you. Unfortunately, even normal length styloids can still contribute to IJV compression. It’s how thick they are & the angle they’re growing that can cause that.
I’d suggest you to be very, very careful with any neck manipulations.
@Awest (search for her posts) wrote a nice article about the risks.
3 Likes
@jrodefeld - Here’s a link to the research article co-authored by @Awest which @vdm referred to
https://www.sciencedirect.com/science/article/abs/pii/S2468781220301399
Thanks for the article. I think the Atlas Orthogonal adjustment technique is very different from conventional upper cervical chiropractic adjustments in how safe it is in comparison. I wouldn’t be considering it otherwise.
My understanding is that images are taken to assess the upper cervical spine, and especially the position of the C1 and C2 vertebrae. Then the doctor uses the AO instrument to very gently reposition the atlas based on measurements taken beforehand.
I’ll definitely be caution and express my concerns to the doctor though.
3 Likes
I’m glad the AO doctor you’re seeing is cautious & thoroughly assesses your upper cervical spine prior to making any adjustments to it. I’ve seen a YouTube video of how those adjustments are done & it does look pretty non-invasive.
I hope it helps you.
So I saw the AO doctor on Tuesday and Thursday.
I can already say that he’s one of the most helpful doctors I’ve seen and I feel pretty good about working with him in the coming weeks. He took about six X-rays of my head in various positions, and loaded the images into a computer program that allowed him to figure out how far out of alignment my atlas was. As I suspected, it was subluxed forward and rotated. Furthermore, my cervical spine didn’t have the normal curvature you’d want.
He spent a lot of time positioning me correctly on the table. The actual adjustment took maybe a second.
The first thing I noticed when I stood up was that my feet were now level with the ground and the pain I had in my hips was gone.
I mentioned to him that I had jugular compression, especially on the right, and he said he would try to rotate the atlas off of the vein and reposition it to hopefully open that up and allow it to drain better.
I have noticed some pretty interesting changes since that adjustment on Tuesday. I wouldn’t say that the venous congestion has improved dramatically, but I do notice other changes. The muscles in my neck have relaxed substantially and a lot of the back pain I was having has improved. I suspect that I may have had some vertebral artery compression as well as compression of the brain stem that have been relieved somewhat. It seems like my nervous system is functioning better and I’m sleeping better.
Furthermore, he works with a guy who does massage who is really amazing. He adjusts your atlas, or other areas of your spine and does his work, then hands you off to his partner to work on relieving muscle tension and breaking up adhesions.
All in all, I can say that I think it’s extremely worthwhile for people who have this condition to see a good AO chiropractor. That’s not to say that they’ll be able to fix everything, but if your atlas is significantly out of place, having it realigned can really help.
Not only that, but upper cervical chiropractors (at least the good ones) really seem to understand this part of the anatomy in a way that many conventional doctors don’t. He’s fully on board with understanding the problem, which is impaired blood flow to the brain, impaired drainage from the brain, cerebrospinal fluid issues, etc.
I showed him my images, and he agreed that there was substantial compression of the jugular vein. He was happy to help me as much as he could, but encouraged me to seek complementary treatments and conventional therapies if I felt they would help. He said he only wants to help me get better.
So I’m very encouraged. I think he and his partner are going to be very helpful. They’ve already helped me feel better in many ways.
I still feel I may need surgery, or possibly some procedures to ensure the veins open up properly after so many years of compression.
I also strongly feel that I have an associated CSF leak. So I’ll be working on getting those things looked at in the coming weeks.
But I can strongly recommend an AO chiropractor for both treatment and diagnosis. I’ve heard other stories of AO chiropractors diagnosing this condition and then referring patients to get surgery.
A very good experience so far.
4 Likes
Great that it’s helped you already! I hope that you can continue to see improvements
1 Like
Really appreciate your sharing this information @jrodefeld! I’m so glad you’ve found an AO office w/ a good combination of doctor & massage therapist to help you get the maximum benefit from your treatments.
1 Like
Just a short followup.
I’ve had a total of 3 treatments so far with the AO chiropractor. I definitely notice some improvement in my neck pain and spinal alignment. Some muscle tension in my neck has been relieved and my low back and hip pain has improved as well.
Unfortunately, I haven’t really noticed any improvement in my most concerning symptom, which is the venous congestion and IJV compression.
It looks like I’ll be scheduling a telemedicine consultation with Dr Constantino pretty soon. I hear very good things about him and his entire staff.
My impression is that he’s able to schedule both appointments and surgery much faster than Dr Hepworth.
Does anyone know how long he is actually scheduling out for surgery?
Is there any reason to prefer either Dr Hepworth or Dr Constantino?
I’m extremely anxious to get this thing resolved as quickly as possible.
I’ve been dealing with this for more than 15 years, nonstop. The prospect of having these jugular symptoms resolved is very exciting. I’m certainly ready.
3 Likes
So sorry that the treatments haven’t helped as much as you hoped, good that there is some benefit from having tried it though…hopefully members who’ve seen Dr C & Dr H can let you know about scheduling etc.