I’m tossing around the idea of not getting my other side done. My Dr said at the 3 month mark it’s time to evaluate. I’m wondering if folks could read my CT results from November (pre-right side surgery) and weigh in. It actually reads that my left side is worse on paper. Length measured around 3.6 bilaterally. They look very fat and bent.
CT Results:
There is ossification of the stylohyoid ligament but it does not extend to the level of the hyoid. Length of the ossification extends approximately 2.7 cm on the right and 2.8 cm on the left. At the most distal aspect of the stylohyoid ligament where it inserts on the hyoid, there is ossification of 4 mm on the right and 4.5 mm on the left.
At C4-5, loss of disc height with bulging disc is present. Small central herniation seen. There is moderate canal stenosis and mild foraminal stenosis.
At C5-6, bulging disc and osseous ridging seen most prominent in the right paracentral region. There is at least moderate canal stenosis.
My remaining symptoms are:
low level Hypnic (sleep entry) jerking: controlled, but still on Diamox). I think the jerking is from the c5-c6 issue as when I get c1 adjusted it improves for a while.
Low level sore head and outer ears (compared to pre-surgery)
We’ve had a few discussions about this on the site…obviously any surgery has risks, so there is that to consider if you’re not very symptomatic on your remaining side, do you want to have an maybe unnecessary surgery. Equally though the styloids aren’t going to go away unless they’re removed, and could potentially cause more issues as you age, which would then mean surgery later when you might not be as fit to get over it, or they could cause irritation and damage to nerves with time which might not heal as well. And another thing to consider is that some of the ES doctors stop doing surgery to concentrate on other work, or retire, so if you’ve found a good doctor who’s willing to operate now, this might not be possible in a few years.
My second side wasn’t as symptomatic, so I did think long & hard about whether to have it removed. I’m UK so the wait was longer anyway, but I decided to get it removed because I wanted to get as good/ healthy as I could be, because I had IJV compression and was worried about the slight risk that posed, and also in case the surgeon stopped doing the surgeries (which he has more or less, so I’m glad I did have it done!). I was confident with the surgeon I had, so was sure that the risks of surgery wouldn’t be too bad.
I hope that this helps you weigh things up a bit!
Yes, it does, thanks so much for that. Hadn’t really thought about a future struggle to heal from surgery. I’m already 50.
The thing that I’d like to do is get another CT or CTA/V to see if any has regrown. This is because my surgeon does’t / didn’t go to skull base. If it has regrown, obviously I’d go to another Dr.
My surgeon likely won’t support my getting a follow up CT. So I’ll have to go elsewhere to get a script. Do you happen to know if a CTA/V would be worth it if I can’t do iodine contrast? Or if I wouldn’t be able to measure the styloids from a CTA/CTV? I never had that, only a cranial CT.
Is your doctor Dr. Annino? I’m unfortunately not much help regarding your CT scan, but I just want to say reading your posts and comments has been very helpful. I’m consulting with Dr. Annino tomorrow.
@Thans - Regarding the CTA/V - you can have a non-contrast CT to look at your styloid lengths simultaneously w/ the contrast CT. An IV is inserted at the beginning of the scan & the non-contrast CT is done first then the iodine based contrast is given via the IV & the CTA/V is done. I had this procedure done in Jan. 2022 & requested it through an neurointerventional radiologist but had to get a referral to him by my regular ENT (not the one who did my surgery). A CT of this sort can also be done dynamically i.e. w/ your head in different positions. If you’re looking for vascular compression then you should request the scan be done dynamically.
Unfortunately there practically aren’t, CT these days is done only with iodine contrast*.
Other options might be MRA/MRV with gadolinium-based contrast which might be even more toxic, especially in the long term, but some people tolerate it better.
There is some good amount of information in the FAQ about the imaging options and will provide you with elaborate answer.
*There are very rare cases when GBCA contrast used to be used in the past with CT scans, though this is not the mainstream practice and doesn’t work the same way as iodine-based contrast media.
Not that much changed since that article, nor ever there were real cerebral CT angiography alternatives beside iodinated contrast, to be honest.
The CO2 contrast (mentioned in the 2013 paper) hadn’t been nor is used for neck/head CTA due to the risks, as far as I know. Maybe someone experimented with it in limited studies, but it hasn’t been approved for “normal” use as far as I know.
The diluted iodine-based contrast now often can be replaced with low-osmosity iodine-based contrasts (I haven’t checked about whether it’s true, but that’s the rumour I’ve heard at least a dozen of times from medical personnel) in case of severe allergic reaction, or kidney insufficiency. But in cases when the iodine-based contrast is totally contraindicated (depending on the condition, e.g. thyroid-related problems may dictate total avoidance of the iodinated contrast media), neither diluted high-osmosity nor undiluted low-osmosity contrast is recommended.
Gadolinium - as per above. Toxicity is the main thing. E.g. with the iodine-based contrast one can relatively safely get 100ml of sufficiently iodinated solution that is well seen on x-rays, rapidly injected into the circulatory system to provide nice “wave” going through the arteries into the brain, mixing up with the blood, and covering long trace behind, thus giving high quality picture where the bloodstream is well highlighted.
Meanwhile Gd based contrast is radiopaque too, but you can’t safely inject 100ml of fluid containing sufficient amount of Gd to make it radiopaque (e.g. blocking the x-ray beam sufficiently enough to be well noticeable). An average reasonable dose (weight-dependent) is 10ml (used for MRI), which is sufficient enough to be seen on MRI (as it has very strong paramagnetic properties, so even very small amount of GD is well seen on MRI), but from the radiopaque perspective, it’s barely visible (can’t be seen on CT).
It’s like having an “invisible ink” that can be seen under UV light. A very small amount of invisible ink (GD contrast) can be brightly seen under UV lamp (MRI). But you need really high amounts of that ink to make the trace more or less visible under normal bright light (CT scanner).
Get a cerebral angiogram:venogram. You need to check your flow as well. Jugular ultrasounds with a certain protocol is what many do three months after surgery.
Did you ever have an MRA/MRV? If you have vascular issues, it’s important as well to make sure everything is flowing properly. If so, did you have collateral veins? That’s causing me more pain than anything else. I would not rush into getting another surgery without getting the whole picture.
Hi! My MRA and MRV was totally clear. Regarding the CTA/V, I am allergic to contrast and can’t take Benadryl. So I looked up which version shows bone better, as a CTA/V without contrast is a waste. I don’t even think a lab would do it. My research shows that a regular CT allows best viewing of bone. So through testing I can only check if there is regrowth.
I just learned my insurance won’t approve another CT until 6 months passed. So I might have to wait a little longer. I think I had mine in October.
If you’ve read something different than what I write above, please let me know. My chiropractor will advocate for whatever CT I ask him to.
I wish it was easy to get the whole picture. Except testing doesn’t show it no matter what. Testing doesn’t show movement, doesn’t show nerves. In a case like mine, pretty certain I mostly have slow CSF Flow from the bones being so thick. And that it’s bothering nerves.
After going in, my doc said my right side bone was close to my carotid. But I don’t believe I was having compression outside of at the very last minute, a feeling of strangulation. It’s hasn’t occurred since right side removal. I think it’s good I did that side even though the bone is more calcified in my other side.
@Thans, the protocol Dr. Hepworth uses measures the blood flow rate at several points along the internal jugular vein from skull base to close to the collar bones as that can indicate where constriction is the worst. Other doctors may have different protocols.
To get a look into what’s going on inside the skull, an angio/venogram is necessary. Sadly, contrast is also used in those.
