Hello! After a couple of years of many many doctors and being housebound much of the time I have a proposed next step of jugular decompression surgery. I want to get a second opinion before doing surgery not because I don’t trust Dr Hepworth but because I’ve had several major surgeries before and just want to cover my bases. I am based in Denver and surgery is scheduled for February so I’m hoping I have time to do some legwork.
I have a folder full of scans and I’ve even uploaded them to the 3d viewer but I am just lost at interpreting it. I have an appointment with Costantino in early Dec - my fear with that is that I won’t have the right scans for him to review to give an opinion. Dr Nakaji’s office told me that my Head CTV is not what they need because it doesn’t include the neck (they were kind of difficult to even get to that message and not very helpful on the phone) - but when I look at the imagery as I pulled it into the Radiant tool it seems to be that it goes all the way down to the collar bone which is what they said I needed. Dr Ruhoy’s office has not responded to me.
I’ve been watching a ton of the video webinars and I am just having a very hard time getting my head around this.
I am treating mold and lyme and mcas. I also have CCI. I had a CSF patch and a septoplasty from various doctors opinions before I made my way to Hepworth. I am seeing a PT Dr Creager next week which I hope might help to shed some light - at least on EDS which seems to be in play.
I wonder if someone would be willing to take a look at my stuff and see if you could help direct me? Should I reach out to Hui - he seems amazing on the webinars.
I would upload imagery here but I don’t know which pieces to load (there are so many) and I don’t know how to remove my personally identifiable data from what I’m viewing.
Any ideas to help with how I can just get someone to look at what I’ve got and help with how to feel more comfortable with understanding it, getting more scans, doing surgery, etc. Thank you to everyone who is so helpful and active in this group - what a crazy diagnosis to have to figure out with so little professional availability. It seems my issue is more extrinsic compression so I’m not sure if the Eagle’s group is the right one but it’s the closest I’ve found and my symptoms are a lot of the same with swallowing, tinnitus, head pressure, light-headed, drunk swaying, etc.
@Kristikls if you want, you can put all your CT files into a google drive folder and then private message me a link to the folder and I can go through your imaging. You wouldn’t be anonymous to me anymore but I wouldn’t be sharing any of your personal information anywhere.
@Kristikls - We have had members who had IJV compression w/o elongated styloids since the styloids don’t have to be longer than normal to contribute to that. We still consider that situation to be ES. I don’t know how long your styloids are, but that’s really irrelevant since there’s a good chance they’re part of the cause of your IJV compression, so you are in the right place to gather information & get support.
I’m sorry Dr. Nakaji’s ofc was difficult/frustrating to work with. We’ve heard that from several members. It’s good you have an upcoming consult w/ Dr. Costantino though.
@TML will be very helpful in interpreting your imaging so I hope you can get it sent to him.
We’ve been told that Dr Nakaji needs a dynamic CT venogram with pressure gradient manometry I think, before he would consider patients. That’s more invasive than a standard CT with contrast…And also some have been told he won’t treat patients with MCAS, so probably not worth pursuing an appointment with him.
I’ve measured the right styloid at about 2.7cm and the left styloid about 2.3cm. There are no pockets of calcified stylohyoid ligament on either side.
Your right IJV is dominant, as it is much bigger than your left IJV.
Above the level of C1 (between skull base and C1) your right styloid is compressing your right IJV. On your left side, your left styloid is touching your left IJV and there may be slight compression happening.
At the level of C1, your right IJV is compressed between your right styloid and C1 transverse process. In between the IJV and C1 is typically the vagus nerve, so if IJV compression is occurring than it is possible that vagus nerve compression is also present (this would present as acid reflux, stomach problems, HR & BP fluctuates, and potentially dysautonomia symptoms). On your left side, your left styloid is actually clear of the left IJV, but the IJV is wrapped around/compressed against the C1 transverse process.
So in other words - both your styloids (especially right) are causing at least some compression of IJVs above the level of C1, and only your right styloid is causing IJV compression against C1.
You also have collateral veins that have formed on the back of your neck, which typically develop to aid in blood outflow from the brain when IJVs are compressed.
If you are considering surgery, I think a right styloidectomy could be appropriate - but only if the surgeon is able to cut the styloid close to the skull base. Getting that styloid out will allow the IJV to open up. I’m not sure anything needs to be done on your left side as your left styloid isn’t causing much compression. If anything it would be a C1 shave on the left side, but given your CCI I don’t want to promote that idea because it’s still up in the air whether C1 shaves make CCI worse.
Just a reminder that I am not a doctor or radiologist!
@Kristikls additionally, your left greater horn of your hyoid bone is in close proximity to your left ECA. Although it can be common for greater horns to be close to ECAs, I always like to bring it up in the context of ES given the strong relationship between ES and hyoid bone issues. If you ever have pain on the left side of your throat when swallowing or have pain the radiates to the left jaw, down to the left chest and arm, than it’s possible that it’s the greater horn. It’s not as obvious to me that your greater horn is/would cause problems but I thought I’d flag it. Your right greater horn is well-clear of vascular structures.
Thank you so much - I’m going through to process all of this. So the recommendation that I have is for a left side decompression surgery and below are pulled from the appointment notes explaining why. I’m wondering if based on looking at this if this makes sense as he didn’t mention anything about styloids at all.
Sorry this didn’t come through very well as I responded via email. This part is cut off and now I am seeing it’s better to come into the forum to respond. This was the second part of that message:
sinues of her LTVS - proximal side is not allowing a lot of blood flow. extrinsic compression. left and right TSVS where there in a confluence there is no way to get to the left side. Jugular veins below base of skull - right side is larger, left side. There is the presences of collateral veins. Lower down. L jugular vein has been fouled up
left transverse sinus, disrupting blood flow. The right and left transverse sinuses are compartmentalized, emptying blood into the heart through isolated circuits.
The jugular veins are asymmetric, with the left side being smaller and more compressed. Collateral veins are present, indicating traffic issues. These vascular abnormalities may be contributing to the patient’s symptoms, which reportedly worsened after a COVID infection.
@Kristikls I’m not very experienced in looking at transverse sinuses - I’m pretty decent at looking at anything skull base and down.
I’m not really sure what decompression surgery would look like on your left side. I just don’t know what structures of the neck are causing compression of the left IJV - I don’t see any major compression personally, but I do see that the left IJV is much smaller than the right (i.e., the right is dominant). So there could be blood flow backup happening purely due too a small left IJV, rather than compression to the left IJV. This would point more to a stent rather than ripping structures out of your neck. Maybe it’s worth asking them to clearly explain which structures of the upper neck are causing compression of left IJV? Compression of the right IJV is clear to me in the imaging, whereas it’s clear to me that your left IJV is smaller (but not necessarily compressed). Does this make sense?
Thanks so much yes it does make sense. My next appointment with Hepworth is in a month and this really gives me more to talk with him about so I can have more clarity around what I’m not understanding. He did say he thought something would have to be done to the Right side so it makes sense what you’re saying - but he thought what was going on on the Left was first priority.
Based on what you know do you think that I have the right imaging for Constantino to do a second opinion? Or is he one that would want more to look at first? Or just have the appointment and see what he says!
@Kristikls I’m not a doctor nor radiologist so Dr. H’s opinion on the matter would certainly supercede mine.
I would just ask him why he thinks the left is a priority to him, and what exactly his plans are. Would be definitely worth getting a clear understanding what he plans to do on both sides!
I’m not as familiar with the doctor’s list as @Isaiah_40_31 and @Jules - they might be able to help you determine whether you should have further consults with other doctors!
@Kristikls - I think the imaging you have should be fine for a consult w/ Dr. Costantino. He’ll let you know if there’s some other scan he wants, just to clarify your vascular situation.
