Serious Carotid Artery Compression Need Support!

Our new member @raccoonwhisperer recently found out he has internal carotid artery compression caused by an elongated styloid.

Here’s a little of his story:

My story is quite a doozie. I have a the number 3 type of ES with carotid artery compression on Right side. I am lucky my cardiologist just yesterday saw the mri and is on it. He is lining up two surgeons and am now waiting for the referrals to call me and get me in for surgery ASAP. Just found out Dr Krempl here in Oklahoma can’t see me until March 14th… OMG what am I gonna do??? Bad news it takes that long.

I also have some bad anxiety attacks at times out of nowhere so I figure the vagus nerve is surely being affected.

Hi @raccoonwhisperer & welcome to the site!
Frustrating that you have to wait so long for an appointment! You could ask to be put on a cancellation list, other members have been able to get in sooner with doctors that way. I guess your only other option is to travel further afield to see another experienced doctor who you might be able to get in sooner to see?
Dr Hepworth in CO is very experienced with VES, but does have a long wait too. Dr Nathan Hales in Texas has done surgery recently with good results, Dr Cognetti in PA does phone consults & is very experienced, & Dr Hackman in NC is also very experienced.
Unfortunately many members have had to travel a long was for surgery; even to other countries!
I hope that you can get some help soon. :crossed_fingers:

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I had carotid artery compression on the right side. I went for several months not being able to do anything. I could not walk very way because I did not have the breath and I would be so tired. It is so hard to get doctors to listen to you. I had mine removed, 8.2 cm, and the breathing is good. I had the left side removed 9 weeks later. Just take it easy and hopefully you can have surgery soon.

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Hang in there racoonwhisperer…you are likely right about the vagus nerve and anxiety.

Everyone should be prepared to likely have at least a 3-4 month waiting period to get into see a specialist unfortunately especially with the staffing shortages around the whole country. I know this seems like forever when you are in pain and disabled from it.

Because I was willing to travel, I was able to get my scans reviewed prior to an appt within 3 weeks. I then flew in a few weeks later. Unfortunately not all docs will review scans first and do a video consult. Alot of people are getting surgery in December because of deductibles, etc. I imagine the 1st quarter of the year might be more open?

I am sorry about your situation. I do not know if my cartoid artery was affected by my VES but I suspect it was because my Viatom ring showed big pulse spikes after head turns (also big oxygen level drops at same time). So it may help you to get a Viatom ring (about £150 Amazon), then you can set alarm levels you want (ring will vibrate) to warn you if you are in danger. I set my oxygen alarm at 90% and my pulse alarm at 120 but you can set/change alarm levels as you prefer. It may help to keep you safer while you wait for surgery? D

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Thanks everyone. i have a virtual visit Tuesday with Dr Sale in Kansas City KS and am very excited. I live in Oklahoma so its only 5 hr drive. Does anyone have pain in the occipital back of neck area along with ear / jaw swelling?

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Hi @raccoonwhisperer - Good to hear from you! Exciting news abt your appt w/ Dr. Sale. Our members who’ve seen him have given him a good report. I hope you find him supportive & helpful, too.

Many of our members including me have hd occipital pain as an ES symptom. I think in every case, the pain has gone away once the styloid(s) was/were removed.

As far as facial & ear swelling, some people have noted a bit of swelling in their face/neck or in lymph nodes. I don’t recall anyone mentioning ear swelling though. When nerves are irritated they can cause inflammation in muscles & other soft tissues so that’s why some people experience swollen areas in face & neck as part of their ES symptoms.

Thanks Isaiah 40 31. Would anyone be willing to talk with me on the phone for some more info? Its so hard to get all the info I want like this. If anyone would consider calling me I would appreciate the call a whole lot right now. If not I understand. Just want some more details about my many symptoms etc…

Hi I do get ear pressure (as well as back of head), worst once trapped fluid is at high levels. As I am in UK I expect talking to USA based members makes more sense for you. Good luck for your appointment. D

I’m sending you a PM to discuss this.

@raccoonwhisperer I have occipital pain as well as ear swelling (they also get red hot). I have pain in the jaw area (more around the styloid area under the jaw). I hope that helps. Good luck with your appointment!

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Hi, I hope you are doing ok while you wait for surgical help. D