I recently had a carotid Doppler which showed 50-69% narrowing of the internal carotid arteries as well as high velocities of both the internal and common carotid arteries. There is no plaque noted so my GP confirmed it must be from structural compression. I finally received my CBCT report from the summer and the oral surgeon said only my right styloid is ‘partially’ calcified. The lengths were not noted which my oral surgeon assured me meant they were not an issue.
I’m so confused. Can my styloids be causing the compression if they are not fully calcified and not elongated? If not, what would be causing the compression? I see a vascular surgeon Monday but I already know that there is no one in my province that performs styloidectomy’s.
Does anyone else have this level of carotid narrowing from compression? I am 36 years old and really scared of what could happen if this is not addressed soon.
Thanks in advance
Yes, styloids that are not elongated can cause ES & the associated problems. Elongation is not the only physical feature of styloids that can make them problematic. Normal length styloids that are thick, curved, wavy, angled or very pointed can cause terrible symptoms (including vascular compression).
Also bear in mind that different doctors have different standards for what they deem to be styloid elongation, thus your styloid which is “partially calcified” could in fact be significant by another doctor’s standards. Of note, it’s actually the stylohyoid ligament that calcifies not the styloid so if your doctor said your styloid is partially calcified he spoke incorrectly.
Styloid lengths aren’t often put in a report unless specifically requested. My ES CT scan only noted that my styloids were long but gave no other information. I believe your oral surgeon is ignorant of what problems styloids can cause, & it was very wrong of him to say unequivocally that your styloids are not an issue. Getting a CTA (CT w/ contrast that looks at your arteries & can also reveal if the styloids are contributing to compression) would help. Ask the vascular surgeon for that when you see him on Monday. Unfortunately, it’s possible he may be dismissive of your styloids causing the compression as well.
Here are links to 3 research papers that discuss carotid compression by the styloid process. You can print them & give them to the vascular surgeon on Monday.
Thank you for this Isaiah. I will definitely share these articles with the vascular surgeon on Monday.
I fear he will be yet another doctor i see locally that is not well versed in the complexities of my situation. However. I have been told he is very knowledgeable and the chief of vascular surgery so surely he will have to acknowledge that my narrowing is due to compression if there is no plague formation? I just don’t know if he will be able to help me.
My dad just died 4 weeks ago of a massive hemorrhagic stroke. I would be lying if I said that doesn’t cross my mind every time I think about my narrowing. It all just feels too much at the moment.
So sorry that you’ve been brushed off, and sorry too about your father, it’s understandable that you’re worried…I’d like to reassure you that a stroke from ES is extremely, extremely rare, but of course you will have that on your mind. I hope that the vascular surgeon you see is more aware. Sending you a hug
@Sunflower, your symptoms seem more in line with IJV compression which doesn’t cause the threat of stroke which is present as a potential problem with ICA compression. So try to feel at peace about that.
I’m so sorry to hear about your dad & the way he died & definitely understand your concern for yourself.
Some members with ICA compression have found that wearing a soft neck collar to help them hold their heads more upright or in a neutral position has been helpful in reducing the vascular symptoms if they’re caused by the styloids. You can find them on Amazon by searching soft neck collar or soft cervical collar.
I had been wearing a soft collar to drive but have been wearing it more since finding out about the compression. Is it likely that the compression is only when my head is turned? The Doppler was done with my head turned so this is my hope.
I had previously been having a lot of issues lying down to sleep where I felt the internal strangulation but for whatever reason that hasn’t been an issue recently. That said, I didn’t know how to lie yesterday, either on my side or on a wedge pillow because I’m afraid to aggravate the compression.
My GP tried to reassure me that people go around with 50-69% narrowing all the time without issue ( due to plague not compression) but agreed this is usually in an older population.
The papers you sent noted strokes at only 50% narrowing so it’s hard to feel reassured or ‘safe’ at all at the moment. What would you suggest be my next step considering surgery is 99.9% not an option here in NL. Do any surgeons respond to patient emails? I don’t think I have the bandwidth to go through formal intake processes for multiple doctors that could take months to hear back from.
@Andrea - The ICAs are most often compressed by head turning and looking down. I think the collar helps remind you to be careful with both those moves. Since you know your ICA(s) is/are for sure compressed when you turn your head, then it’s best to try turning your whole body instead of just your head when you need to see something that’s not directly in front of you. If you can wear the collar when you sleep, that will also help your chin not to drop toward your chest & may also help to keep you from turning your head too much. I expect sleeping in the collar wouldn’t be very comfortable. You could experiment with a rolled up towel & put it under your neck to support your neck when you lie on your side to see if that helps you feel more comfortable. If using a wedge pillow & sleeping on your back, you could also try rolling up a towel & putting it under your chin to help it not drop as you sleep. A U shaped pillow could also help with this as well as to remind you not to turn your head to one side or the other when lying on your back.
Though what your GP told you is slightly comforting, with your dad’s recent death from a stroke, it is more important for you to get this taken care of sooner than later. Impress upon the vascular surgeon the urgency of your need for surgery when you see him. Don’t be shy about doing this. Ask him for referrals if he feels he can’t help you. If you have any family or friends who could go with you to the appointment to advocate for you, that would also be helpful, & perhaps one of them could help you set up any other appointments that may be needed.
An ENT skull based surgeon (often a cancer specialist) is the type of specialist who most frequently does ES surgery. Unfortunately, I don’t think any doctor will have an email discussion with you without seeing your first or at least having a video consult. There must be a doctor with the proper experience to help you where you live as I recall traveling outside of your province is out of the question. It’s just a matter of finding out who that is.
Thank you once again for your thoughtful reply. I will try the collar at night and see if I can tolerate it. I wake up in the morning quite dizzy, and I know my O2 drops during the night, not sure if that is correlated. I had an at home sleep study done and was noted to have episodes of obstructive apnea so am waiting for a formal one at the hospital.
I am able to travel out of the province for care. My concern is more for how long that will take. I am also exploring out of country options if it would mean I could get things addressed quicker. I called Dr. Hepworths office and left a message. I was hoping to avoid out of country due to cost but I don’t know if I have the luxury of waiting.
To add to Isaac sleep advice I used to roll a towel lengthwise and put it above & on both sides of head and found it effective at preventing my moving head to side while I slept. Take care. D
Drs. Cognetti, Hackman or Annino would also be fine to do your surgery since it’s your ICAs that are the problem. The place Dr. Hepworth excels is with internal jugular vein (IJV) decompression though he would be able to do ICA decompression. You’ll be most likely waiting till sometime next year for a consult with him though.
It’s possible that one of the other doctors I just named could see you this year & get you on his surgery schedule sooner. ICA decompression surgery is usually much more straight forward & lower in the neck than IJV compression thus it’s often an easier surgery. Whomever you decide to contact, make sure to ask to be added to their cancellation list as that can also expedite your appointment. Also, make sure you are clear you’ve been diagnosed with ES w/ carotid artery compression & are having stroke-like symptoms. That might also get you in sooner.
I am in the emergency department now. What would be the most beneficial imaging to have done to determine what is causing the compression and where the compression is?
I had a CTA not too long ago with was negative but it was done in neutral position and I don’t know that they do it any other way.
A positional CTA seems to be a ‘specialized’ test my ER would not know how to interpret so no testing was done. Instead I was told maybe my Doppler was incorrect and there’s no issue with my carotids at all ( although I wish this to be the case, I am doubtful that my level of narrowing was a complete error).
I see vascular surgeon Monday. Hopeful he will at least have some knowledge of compression issues and send me out to someone that can help.
Btw from my experience with Canadian vascular surgeons (three at least), they are good at acknowledging arterial compressions but not venous. It’s worth printing out a few recent scientific studies
about IJV compression issues, esp. the one by Higgins
@Andrea - I’m so sorry I didn’t see your request for help until just now. That’s one thing which is hard about this forum - questions that need immediate answers often don’t get answered in a timely fashion. Please ask the vascular doctor on Mon. for a referral for a positional CT & also ask that it look at whether or not your styloid processes are elongated & contributing to the compression. In some cases, compression can be caused by local soft tissues like nerves, muscles or scar tissue. It’s important to try to determine that.
I am so sorry for how frustrating the process of finding the right doctor has been for you, but I’m glad you at least have seen a doctor who saw the importance of referring you to a vascular specialist.
Try to relax a bit as stress will make your symptoms worse.
Welcome to our forum @kindalljones. I’m sorry you have compromise to your carotid artery. What symptoms do you have? Do you know if you have ES or are you still seeking to find out?
