Hi!! Apologies and thanks for reading the lost post ahead.
Long story short, I had two concussions in 2018 about a week apart from each other. I was left with classic post concussion symptoms like light sensitivity, migrane/headache, dizziness, brain fog, fatigue. However as years passed, I never got better. About 4 years later I was diagnosed with Vestibular migrane which I have been treated for ever since. The treatments, simply put, don’t work that well. I still get about 25 migranes a month. Maybe they help reduce the intensity but honestly Im not sure anymore.
Within the last year, my throat started hurting really bad, along with the neck stiffness and pain I’ve always had. My neck clicks when I swallow and it feels like when you need to cry but you can’t. Im extremely dizzy when moving my head. So I took it upon myself to seek out an accredited ES surgeon in LA after finding out about ES.
He ordered the CT (going to try to upload images) and found that my styloids are partially ossified/calcified on both sides. This has left me in a predicament because I am not sure what to do next.
The options are:
Wait til after my wedding in December to get the surgery.
Get the surgery within the next two months and hope for the best.
Im in pain often but it’s a pain I’ve come to know how to manage. Im nervous about surgery as I’ve never had one before.
I am just worried it wont work and Ill be left with possibly more different issues from the surgery. So some questions:
Has anyone gotten theirs removed that still had ligament and not just bone?
How is the recovery? The surgeon said 6 months, but how brutal is it?
Welcome @RitaPita! I am recently diagnosed as well but haven’t yet had surgery so I don’t have a ton of advice to offer - but I can relate to several of your symptoms. Sorry you experiencing all this while planning a wedding!
Welcome @RitaPita. I read your profile and found your surgeon’s comment really interesting, did they say whether they think your current symptoms are actually coming from ES, or just that it could become more of an issue over time?
As for your questions, I didn’t find the surgery itself brutal. The drain on one side was extremely painful, but that was out after a couple days. The drain on the other side wasn’t an issue at all. The harder part for me has been my body adjusting after years of compensating, and based on your history, you may experience some of that as well.
I moved heaven and earth to get the surgery, and I’m very grateful I did. I’m about four months post-op and didn’t want to speak too soon on the forum, but the past couple weeks have been really encouraging. I didn’t have what would be classified as migraines, but I did have excruciating head pain, swelling, and pressure behind my right eye. This has gotten so much better over the past month. I think @Isaiah_40_31 and @Jules could add more on the nerve/migraine side and how it might relate to your symptoms.
One thing to keep in mind, ES doesn’t resolve on its own. It’s typically progressive, as your surgeon noted, and can become quite debilitating, which can also make recovery more involved. It’s a very personal decision, but based on my experience, I would lean toward getting it done sooner to start the healing process.
@MGORNEAU I guess the hard part is he thinks that it is causing some of my symptoms, but maybe not all. Like it will obviously help my neck and throat pain, but we are not 100% sure it will help the migraines. I asked “Have you seen people with similar symptoms and CTs to me benefit from the surgery” and he said yes. But he also emphasized that there is not a definite percentage, like he couldn’t say 90% I will feel better. Basically, it is like this is the last resort for most people, and it would be the same with me. I just worry that if it doesn’t help anything, I could get other new issues like nerve pain. But I am trying to not think about the “what ifs.”
I appreciate your advice and sharing your story. I am very glad you seem to be getting better!
Hi @RitaPita - Welcome to this forum! I’m sorry for the symptoms you have, especially the migraines. Do you have other symptoms like brain fog, tinnitus or visual changes that go along with your migraines? If so, you may have vascular compression being caused by your styloids. When the internal jugular veins become squashed, usually between the styloid processes & C1 vertebra, a situation of intracranial hypertension occurs which causes migraines, dizziness, brain fog, visual changes & often tinnitus or pulsatile tinnitus (tinnitus which pulses w/ your heartbeat). If you do have those additional symptoms, then there are very specific doctors we would suggest for you to consult. If you have migraines w/o the other symptoms, those can be caused by irritation to or compression of the carotid arteries (internal &/or external) or even by the trigeminal nerve.
Yes we have quite a number of members who’ve had migraine symptoms that went away once the styloids were cut back as close to the skull base as possible & if there was vascular compression that was taken care of during the same surgery. Recovery can take quite a number of months as your doctor noted, but that is full recovery. Usually w/in about 2-3 months of surgery, many people are feeling pretty normal again. It’s just that nerves can be slow to heal completely so there can be some residual symptoms that hang on for a while.
The comment your diagnosing doctor made about waiting 5 years until your styloids are “completely calcified”, which would mean from your skull base to your hyoid bone, is ridiculous. We’ve only had a few members with calcification that extensive, & the symptoms that causes are downright debilitating. It’s best to get them dealt with when they’re less elongated as the surgery is easier & recovery is usually quicker.
@isiah_40_31isiah_40_31 thanks for your response! Yes I have all those symptoms you listed (intracranial hypertension) 24/7. Even so much that im suspected to have vestibular migrane, pots, and vertigo, tmj. But now this throat pain has shown me it could be linked to ES and my gut is telling me the sugery will help and this comment definitely helped. I for sure dont want to wait until it gets worse in order to feel justified for getting the surgery. I should clarify: I think he meant waiting until the section I have is completely calcified with no ligament, he wasn’t hoping it would grow longer and become connected.
It would be helpful if you could get a CT with contrast to see the blood vessels and if there’s any compression- Internal Jugular Vein compression sounds likely with your symptoms, as many of us have intracranial hypertension symptoms with this. Occasionally there’s carotid artery compression as well, which can cause headaches, so to get a scan showing both the arteries and the veins as well could well be helpful, then this might help you make the best decision for your surgery. As @Isaiah_40_31 says, some doctors are more experienced with vascular ES; Dr Nakaji in AZ, Dr Hepworth in CO, Dr Costantino in NY & Dr Cognetti in PA.
Dr Osborne in CA is very experienced and does remove the styloids high up near the skull base, so could be good to see & closer for you, but he doesn’t take insurance.
I agree with the others that hopefully the initial healing from surgery would be quicker than your doctor suggested, although nerves can take up to a year to heal.
Thank you @Jules ! From what the Dr saw there was no compression at this time. At least when my head was not turned / straight on for a CT. Which is interesting because my symptoms lean towards having compression, unless it couldn’t be seen on the CT and is present or maybe my symptoms are caused by pots?
I hope you don’t mind—I ran your imaging through ChatGPT (I use it a lot for anatomy review), and this was the key takeaway according to AI assessment:
From your 3D images, the spacing between the styloid/ligament complex and C1 looks fairly tight. That’s the corridor where the internal jugular vein normally runs, so when that space narrows, it can create a potential compression setup.
What stands out is that this looks more like a styloid/ligament-driven narrowing at the C1 level, rather than something inherently wrong with C1 itself. C1 is essentially acting as the backstop in that space.
Because of that, it may not be a “C1 problem” in isolation. In cases like this, the question is whether the styloid (and any calcified ligament) is creating a narrowed channel where the vein could be compressed between the styloid and C1.
Also worth noting—these 3D renderings show the anatomy well, but they don’t show whether the jugular vein is actually compressed. That part usually comes from the original CTA/CTV slice images (axial/coronal), not the 3D view. If the concern is dynamic or positional compression, that may only show up with imaging that captures the neck in the provoking position, such as dynamic CTA/CTV or other positional venous imaging.
@RitaPita - Nice job on the 3D conversion! I annotated 3 of your images. I’m a little confused though as the images you have marked as left look like the right side & the right look like the left. Are the images posted in “mirror image” positions (i.e. the first image looks like the left to me but you labeled it as the right)? I’ve annotated them according to the way you labeled them (L & R) above.
In this first one, your left styloid looks minimally elongated but it is very pointed & you have a couple of small areas of calcification on your stylohyoid ligament. It appears the small vein branching off your IJV may be causing some compression to your internal carotid artery (ICA) as the area of the artery below the branch looks engorged to me, whereas the area above it is much narrower. Your IJV doesn’t look compressed in the styloid/C1 area, but lower down within the white oval, there appears to be compression which could come from the SCM or other muscle/soft tissue. Other head positions could possibly cause IJV compression as has been speculated. You have some stylohyoid ligament calcification on each of the lesser horns of your hyoid. You’ve lost the natural curve in your cervical spine which can bring the styloids closer to nerves & blood vessels. The curve can be restored using gentle PT exercises, but it takes time & determination. List of my favourite resources on YouTube to learn anatomy
In this image, the base of your right styloid looks quite thick & the styloid is also very pointed but overall it’s not very elongated. You have at least one section of calcified stylohyoid ligament as well as s-h ligament calcification at the hyoid’s lesser horn. Your IJV may be somewhat narrowed lower down as on the left, but I can’t tell for sure.
Since I’m not a doctor, these are things you can discuss with whichever ES specialists you consult with to get their opinions.
@Isaiah_40_31 Oh, that makes sense! I must’ve had the wrong sides. I really appreciate the time you took to do this and this is very interesting, since the surgeon I met with doesn’t touch hyoids, which is probably why they didn’t mention it. I wouldn’t have known if it wasn’t for you. Thank you!! I will take this all into consideration and discuss it with my doctor.
The calcifications on your lesser horns may not be a problem, but it’s still worth asking a seasoned ES surgeon about them. Also the bits of calcification on your stylohyoid ligaments may be of no consequence but worth asking about, too.
@MGORNEAU@Isaiah_40_31@Jules my surgeon said that although he does not typically order CTA or CTVs that he would order one for me if I’d like. Which one would you reccomend? Which will be more likely to inform my vascular symptoms? I assume CTV, although I know it is more intense / a procedure in itself.
You will want CPT codes 70496 and 70498 this is head through clavicles. This is the imaging that Dr. Nakaji required for a consult, he referred to it as a CTV. Mine was not done positional there may be other suggestions?
@RitaPita I can tell you are making a very educated decision with regard to surgery. I had an MRI cervical spine last week to assess a known lesion at C1 (most likely fascial band) caused by the elongated styloid process on the right side. I still have right-sided head/occipital pressure and nerve pain, and this may be contributing.
I’m only mentioning it because it doesn’t negate how important the styloids are, in my case they were the primary driver. But because they weren’t addressed sooner, it seems like they caused changes that don’t just immediately resolve once the styloid is removed.
I may be off, but reading through a lot of stories, it feels like the styloids are the primary issue, and some of what people deal with after can be from what they caused over time to surrounding structures and tissues.
I am not saying you should or shouldn’t have surgery or when, but since you’re being methodical, this seems like a piece worth factoring in. It may help with expectations around recovery.
@RitaPita - If you can get a dynamic (head in various positions) CTA/V that would be best. If it has to be one or the other, I think a CTV is best based on your symptoms. There are radiology clinics that will do both in one session. It’s the timing of the contrast injection that determines whether the arteries show up more or the veins i.e. the contrast is injected in the arterial phase of the heartbeat for a CTA & the venous phase for a CTV. Based on the pictures you’ve posted of your CT scan, I do have a question about whether or not you might have some ICA compression on the left.
What you’re thinking of as a more intense procedure is a catheter venogram which is a whole procedure done outpatient but in an operating room. Some doctors do it w/ anesthesia whereas others think results are more accurate w/o or w/ only “twilight” level. A CTV takes 15-30 minutes tops.
I’m glad your surgeon is willing to order that for you even if it’s not typical. Have you mentioned who you’re seeing? I’m sorry, I’ve forgotten.
