Buzz. My case history, findings and radiology images

@Isaiah_40_31 Fantastic, thank you! That all makes sense. You’ve given me some great topics to study.

If I am experiencing compressions of those nerves, and the TSP and TPC1 are removed, would that most likely take care of the problem? Or is there a significant chance that other structures / soft tissues might also be playing a role in the compression?

Is it standard practice for the ENT to “take a good look around” during the surgery to make sure that there isn’t anything else impinging on the carotid sheath? Is that something I should discuss with them?

I wish there was a way. I could be wrong but this is purely my speculation based on the visual luminal thinning I see on the images and number of vein studies I read over the years. I am assuming that the vein was naturally smaller to begin with so add that to a lengthy compression and you could potentially be dealing with hard to stretch vein (not a doctor’s opinion of course).

This one I am not sure. Typically, Doctors wait for months before assessing the compression area and its full patency after surgery. It also varies from doctor to doctor. For example, Dr. Hepworth combines endovascular procedure such as ballooning and pressure measurement with the Styloidectomy operation so it depends on the doctor.

I agree with you if the styloid-induced compression on nerves is causing a lot of pain, then it makes sense to take care of that first.

Yes, this is indeed possible and I have read a number of studies where the vein gained its pre-compression diameter but the original size matters too. If it was smaller to begin with, say 5 mm in daimeter, at most, it will gain upto 5 mm. I read it somewhere that, just like a river, Vein or Sinus size is determined by the total number of tributaries that it collects from. In other words, there is relationship between blood volume, blood pressure and the netflow. The higher the blood volume, the bigger the pressure to keep the vein open which results bigger flow (assuming no compression, blockage or hypoplasia). The opposite is also true. The smaller the blood volume, the less the pressure resulting in smaller net-flow. It also can result in vessel narrowing eventually as the pressure to keep the vein open declines. So there is 2 kinds of narrowing, one induced by compression(bone, muscle, vessel etc)/clotting and one that is by birth (hypoplastic). So you are right, a longer term compression can induce hypoplasia (acquired one) but the feeding vein is usually what determines the blood volume and its original size.

If I take my case as an example, my right IJV is smaller by birth and I assume it is draining roughly 15% to 20% of my brain since it connects to smaller transverse sinus, the total net-flow from the brain is about 15% - 20% as well. The rest ~ 80% - 85% goes to the dominant left one since it connects to a dominant transverse sinus. As you can see (Cyan arrows - 1st image), the transverse sinus is also smaller on the right side which is the determining factor whether it is by birth or induced one. So even with the compression removed (right IJV is slightly compressed by c1 as well shown by the second red arrow on the second image), my expectation of net flow improvement will be minimal (Max ~20%). This is why my vascular doctor does not even bother opening it up.

I know this is simplistic drainage model as IJVs, in reality, have other tributaries below the skull such as facial vein, thyroid veins…etc but I was focusing more on the brain drainage pathway which is the main tributary.

Do you have an image of your transverse sinuses, both sides? I would like to compare.


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My radiology scan DICOM files:

I have anonymized my relevant radiology files and uploaded them to Dropbox.

If anyone would like to download them, please click this link: Buzz's anonymized DICOM files.zip.

It is a 1.5GB zip file, containing the following scans:
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I welcome any insights or comments that you guys might have on them!

I hope that they might also be useful for people to compare with your own scans.

All of the scans contain my TSPs. The 2014 scan has the most detail.

@KoolDude The 2014 and 2010 scans contain contrast views of my IJVs and transverse sinuses.

To anonymize the files, I used this free software https://www.microdicom.com/ and this guide: Anonymize DICOM images | MicroDicom DICOM Viewer

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Thanks @Buzz I will definitely have a look when I get some cycles. BTW, not sure if you already know it but alternatively there is site (https://www.dicomlibrary.com/) where you can upload them anonymously without needing any software.

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Tight muscles can definitely compress nerves; if @KoolDude is right about compression by the SCM that could be playing a part, but that’s something that could be worked with, trying PT, acupuncture, botox injections etc…sometimes the nerves can be damaged from the compression/ irritation & don’t heal completely. My trigeminal nerve still gives me a bit of pain but has improved since surgery.

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I’m not quite sure about it, but there are events like aneurysms affecting both arteries and veins, and in some of the scans I have seen particularly enlarged IJVs to the level the pulsation becomes noticeable externally on the neck. Also venous are known for rapid revascularization and dilation in general, that’s how collateral veins become larger once the main pathways (IJVs) become restricted. Which suggests, IJVs might be able to expand more than their “original” size too over the time.

But what most doctors agree on, once the IJV is completely shut (clot, scar tissue), the chances for it to reopen are slim (my case after waiting too long to free the badly compressed IJV up).

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@KoolDude I have just had a go at isolating my transverse sinuses + IJVs + carotid arteries in the MRI and CT scans.

Here is a video with the results:
https://www.youtube.com/embed/hvyGVDcPMJY?vq=hd1080

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@Buzz - There’s a good likelihood that if you get your styloids removed & pressure off nerves & IJVs that over a period of some months to a year or more, you’ll get substantial relief from your symptoms.

There have been a few members who mentioned their surgeons finding muscle or tendon impinging nerves or blood vessels & took the proper action to stop that. I would hope that all surgeons would pay close attention to what’s going on in the neck when they have it open, but unfortunately, I suspect there are some who are laser-focused on styloidectomy & miss other things that could be problematic. Prior to surgery, asking Dr. Costantino if he “goes the extra mile” checking for all possible nerve/vascular irritants while you’re in surgery would be a good idea. As a matter of fact, that’s a question we should add to our “things to ask your doctor before surgery” list.

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I love what you techy computer guys/gals can do!! Very amazing video!

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Hey there, Can you point me to video capabilities for Radiant? I have a trial copy … TIA

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@vdm, the question is not whether veins are elastic or not. It is fact that veins can be stretched 10x larger than their original size. If you ever saw them ballooned, you can attest how stretchy they can be but once the balloon deflates what happens. They return to their original size most of the time (a few might remain bit larger for a while - it is also important to note that narrowed veins after ballooning might become larger because they were shrunk below their original size so this case is same as going back to their original size as well). Without going deep into the physics of the elastic properties of deformable material such as blood vessels, it is scientific fact that all elastic material return to their original size once the stretching force is removed (assuming they are not stretched beyond their elastic limit which will distort the material). So in order to keep it stretched beyond their original size ( > 5 mm as is the case of my example), you will need a constant external force such as the one that stents provide. But, in the absence of stents, the only force that is keeping them open is the blood pressure (remember pressure = force applied to an area (F/A)) which won’t be enough to stretch them beyond their original size. Veins are low pressure vessels unlike arteries so they do not have the type of peak systolic pressure that thick walled arteries endure. So veins will return their original size at best when compression is removed assuming they do not become fibrotic. I hope I answered your question.

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Good video, as I suspected, left IJV does connect to smaller transverse sinus which determines how much fluid (blood + CSF) it gets from the brain. Even if it was made bigger than its normal size, it won’t change how much it drains due to the limit of the narrow transverse sinus.

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I think I understand what you are trying to say, but the main difference between the live biological tissue and a garden hose obeying pure law of the physics is that the biological tissue is under constant remodelling.

Cells constantly divide, grow, die, and that’s the reason why alive tissue is so dynamic and many types of tissue can change over the time. I even would suspect, the lack of flow (compression above the point X) is what prevents the veins to stay widely open below the compression point X, as due to the alternative pathways, there is no sufficient volume of blood flowing to keep that one particular segment below the compression point X open. The blood of the particular heart beat pulse has drained through the alternative paths already. It’s like having a hose with a T splitter and two taps, each on them connected to a balloon containing a small hole at the other side. If one of the taps is fully open and the other just 20 percent, the first balloon might inflate as the draining hole in the balloon will give some backpressure. The 20% balloon might remain pretty collapsed as the amount of water coming will be draining through the hole in the balloon faster than the backpressure will build up.

I don’t have a proof but it would be not impossible for the vein to grow and expand over the time given there is, as you say, some pressure from inside. Should that come from a stent or increased volume of blood flow exceeding certain threshold, I suspect, is less important as long as the vein is not fibrotic/necrotic and the person’s age still allows biological processes to happen.

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@KoolDude Do you know of a minimum size of the IJV? (minimum for ‘normal’ functioning)

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@leah I wish I knew. All I know is they come in different sizes and shapes. some have equally sized ones, a large portion of people have one dominant and one smaller one.

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@KoolDude Thank you… No worries, I do have a vascular neurologist appointment, where I’m sure I can get that answer.

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@Leah I eventually worked it out by clicking on all of the buttons in radiant and restarting it whenever I got lost. There are a number of different ways to create videos. There is a simple method, and also some more complex methods with animated “keyframes” that you can create. It’s a bit hard to describe how it works and it took me a while to wrap my head around it. The “quick movie” method is super easy. Let me know if you can get it working with a scan. I could record a screencast if necessary.

Here are some relevant buttons that I press to create videos:

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@Leah @KoolDude I don’t know the minimums, but I did locate the averages.

Here is a table that I plan to print out for my ENT appointment. It includes the averages in the third column (some are specific to males):

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Excellent analysis! I’m so sorry for your suffering ((. You will be presenting concrete information and could set a standard for how we present to our doctors.

While my internist is ‘going along’ with providing me help, he clearly has some reservations of whether this is what it is. I will put this together for him.

I come from software background (have a a problem solver mentality) and I have been pondering how best to provide information and get what we need from the doctors.

I’m at 20 years, you went most of your life and one woman went to 60 doctor appointments. Having a concrete pack of materials as you are putting together, can go along way towards helping people get the care that they need.

My primary issues are nerve related with a splash of IJV compression when I turn to the left. Without a scan, showing the nerves that one’s a bit difficult to present. But this picture from caring medical is a good start. I’ve colored in my styloid in blue and I ‘feel’ I’m hitting vagus nerve, accessory nerve, trigeminal nerve, Occipital nerve.

Well done :clap::clap::clap:

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@buzz. Got it. So when you carved away and isolated the JV in the styloid, I’m assuming you used the scalpel and pulled everything else off. Which I just figured out how to do it. So thank you so much!

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