Went to a very nice, considerate doctor in hopes of getting a little more help, but after my visit with him he agrees I have palpable styloids in my throat by my tonsils but is not convinced I have ES. I asked him about the vascular risks and he said it’s not possible because they all run laterally to the styloid and don’t touch basically. I was a bit surprised he sent me home, but later asked him if I could go ahead and have a contrasted CT, which he said he would order one. A few questions:
Although the past 8 years I’ve had head fullness, tinnitus, weird twitching and nerve issues, pain when swallowing (most notably when my tonsils are swollen), along with some other mild issues, overall, my symptoms are mild enough where I can live with them. They are annoying and uncomfortable at times, but overall probably not near as bad as most others here. That being said, I do feel like there has always been a common sensation that my arteries are being constricted slightly, but it has never gotten worse than that and really just more noticeable when laying down, but not positionally worse (like when turning my head etc). My questions is, will the CT scan show any vascular compression if there is any at all? Or is it only when it is severe? Is there anything I can do to try to make sure the compression shows up even though mine is just an overall general feeling of compression, and not positional?
Will any other abnormalities (such as calcification of the ligaments) be able to be noted easily? Or is this something I need to specifically ask them to look for? Does nerve inflammation show up on the CT scan also?
I am mainly wanting to rule out any risks by not having surgery. Truthfully I can live with the symptoms, although I wish I didn’t have to, but I just don’t think the surgery would be worth the risks if I can live with it. So I’m just covering all my bases to make sure I’ll be OK if I choose not to have surgery.
I’m sorry you didn’t receive more support from the doctor you saw. I suspect you know he is wrong about the styloids not being able to compress the internal jugulars (or internal carotid arteries). He is assuming that elongated styloids politely run parallel to the IJVs/ICAs which they often do not. When the styloids elongate they often develop a curve or twist that brings them into contact w/ the styloids such that compression occurs. Additionally, depending on the size of the transverse processes on your C-1 vertebra, the IJVs can get squeezed between the TPs of the C-1 & the styloids.
A CT w/ contrast will show venous compression regardless of how mild or severe it is if the head is the position that causes the vein to be compressed. I understand you don’t notice any positional changes so it’s possible that yours are slightly compressed when your head is in neutral & thus would be visible in the scan. The best thing you can do to make sure compression shows up (if it’s there) is to really pay attention to even very subtle changes in symptoms that occur as you move your head around & then have your head in the most provocative position when the scan is done.
Calcification of ligaments shows up in a CT w/o contrast as the ligaments w/o calcification are invisible. So if you can see anything between the end of your styloids & your hyoid bone or pointy bits extending toward your styloid from your hyoid, you likely have some ligament calcification.
I think your goal is very wise - to rule out risks so you can postpone or not have surgery. I hope you can get good information that helps you know the best way to proceed.
Well done for not giving up & pushing for your CT! The doctor’s wrong though- we all have slightly different anatomies & kinks, so just because he can feel the directions of the SPs doesn’t mean he can rule out vascular ES. I was told the same by one doctor, & I had bilateral jugular compression!
The CT will be done laying flat, so that may well be helpful for you & will show any compression, it sounds that’s where you feel it most. Any calcified ligaments should show too, but it’s best to check that the CT is evaluated fully for ES & ask that they look for styloid angle & length, for a calcification on the ligaments, & for compression of the blood vessels. And a good idea to get a copy yourself to look at & to be able to send to a different doctor, if you need to.
I think you’re wise to get as much info as possible before you decide about surgery.
Thanks so much for the help and guidance. I’m glad to know that venous compression will show regardless of severity! I am assuming the calcification will show up with or without contrast correct? I did ask him for a contrasted one for the vascular side. Do you think it is necessary to tell them to make sure they check for calcification? Is that something that is overlooked? If so, when do I tell them… at the time of the scan?
Calcification will show up on either type of CT scan. I would definitely ask for the radiologist to look for calcification on your stylohyoid ligaments as well as IJV compression. Yes, ligament calcification is sometimes overlooked when styloids are obviously elongated.
Hi Injinx, You don’t mention what type of doctor you are seeing, but clearly this person is not hugely expert in ES yet. You have already received great advice, so I will add just a few additional thoughts. 1. You are saying your symptoms are not positional, but remember that if you have them primarily when lying down you most likely are actually having positional symptoms. Fortunately that should be captured by the scan as you will be on back during CT. 2. I agree with your rationale about getting CT to make sure your styloids/ligaments are not behaving more nefariously than you believe. However, it would really be better if you had a doctor who could help you make that medical determination, as none of us should be flying solo in determining our own care in my opinion. It would be extremely unusual for the radiologist to make recommendations for or against ES surgery, and the doctor ordering the imaging sounds like he has a bit to learn still, which makes me wonder if you would be still on your own to interpret the results. 3. One of the many joys of aging is that ES can be progressive. You do not mention your age but you might just want to bear in mind that your symptom severity could change over time. I hope you learn much for your imaging.
OK, I received the CT results. Says the left styloid is normal at 2.4 cm, the right styloid is elongated at 3.5cm and the tip of the right styloid courses anterior to the ICA, contacting a branch of the ECA. Nothing else was noted as far as abnormalities. The ENT I used said everything was as expected and fine. I’m wondering if I should go ahead and pay someone who specializes in Eagles to overview this scan to get a final opinion? It sounds like I’m not really at risk other than dealing with these annoying symptoms but I can live with them. Which doctors are available to look over these scans in a timely manner and are there any who will do it through insurance? Thanks!
Dr Samji in CA will review scans, I’m not sure about insurance though. Dr Cognetti in PA does too, but has a slightly longer wait. I’d want a bit of clarity about the ‘contacting a branch of the ECA’ comment; if the styloid is in contact with the ECA branch that could cause inflammation possibly. So getting another opinion sounds like a good idea.
Totally agree w/ Jules. The fact your styloid is contacting your ECA is a different twist than we usually see as it’s normally the ICA or IJV that is impacted in vascular ES cases. I know of only one other member who had a similar situation.
You need to check w/ Dr. Samji’s ofc to see if he takes your insurance, & if he does, your insurance should pay part or all of the cost for a second opinion appt. He books out 2-4 weeks for a phone consult whereas Dr. Cognetti books ahead several months. You’re wise to follow-up w/ an ES specialist. Good job!!
Well… that makes me feel great. I called their office today and left a message, I hope it doesn’t take long to call me back because I definitely need to figure out what I’m going to do about my health insurance renewal for the new year so it would be nice to talk to him before then. That being said, the person that you know of that had a similar situation, what did they end up doing, do you know?
Her styloid was pressing on both her ICA & ECA (very unusual) & she had surgery to have it removed. She had other symptoms beside the vascular component & surgery helped her a lot. Dr. Samji did her surgery, btw.
Dr. Samji will charge $300 for consult if insurance doesn’t cover it.
As an FYI: Often the measurements by radiologists are not exact. Dr. Samji explains the scan interpolates between the slices. He looked at mine and said they were longer than what was on the report. It turns out it was longer than thought upon surgery so take the report with grain of salt. Hes done 450+ of these surgeries and has gotten pretty good at interpreting the CT scans.
Dr. Samji did my 1st side back in April and doing the 2nd in a couple weeks. I cant say enough about how great he was. My experience has been good. My only complaint is he wont take a picture of the styloid after surgery. Maybe next time I can at least see it although when waking up from surgery, I probably wont remember it.
Thanks! I already sent him my paperwork and CD last week. Although they charge $500 now without insurance, but thankfully I have insurance. I was hoping he would be more meticulous, because when I look at the 3D rendering it definitely looks like there’s some issues there.
$500 now? Probably making up for loss of surgery business during COVID…LOL.
Nice to know. $500 is worth his opinion especially when so hard to get into see a specialist for sometimes months. Hope you get the opinion quickly so you can make a plan to move forward.
I called their office today and left a message, I hope it doesn’t take long to call me back because I definitely need to figure out what I’m going to do about my health insurance renewal for the new year so it would be nice to talk to him before then. That being said, the person that you know of that had a similar situation, what did they end up doing, do you know?