Thank you. I really, really need it. I’ve continued to have a ridiculous number of very difficult personal and health challenges pile on top of this. I try to see the positive side: I’m so lucky that I can spend sometimes hours a day at medical appointments trying to figure out what is wrong.
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Good you can try to find a positive in this! Only way to deal with it all really, I feel for you 
With ICA compression I would think any doctor aware of that situation should move you to the front of the line. I’m very sorry you’ve been put off!! Give that doctor who said she’d call you back another call on Monday to find out when you can expect to hear from her. Being pushing in a situation like yours is critical! You can also call the office of the doctor you have the appt w/ in 19 days to request getting on their cancellation list, if you haven’t already, & also let them know you have carotid artery impingement so your situation is critical. I don’t know if that will help, but it might.
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Well, the ENT confirmed that some of my styloid ligament is calcified. However, she didn’t think it could be causing the stenosis and has no way of confirming which of my symptoms could be coming from it, and so is hesitant to perform surgery and potentially make me worse. I get it. If ES isn’t causing the compression, that means I’m currently looking at ICA stenosis, a potential ICA pseudoanurysm, venous thoracic outlet compression, TMJ, upper cervical instability, and Eagle Syndrome. I also have Ehlers Danlos. I don’t know what’s happening but I’m really getting concerned that soon I’ll find out the hard way.
Dr. Constantino doesn’t do a wait list.
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I’m sorry that this ENT wasn’t that helpful, I’m sure the waiting is scary, but at least with one of the doctors experienced with VES you’re more likely to get a proper answer…so is it still a couple of weeks until you speak to Dr Costantino?
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@Ifrit - I’m also sorry the ENT was a bit dismissive. It sounds like she isn’t well versed w/ ICA compression being caused by ES. Taking care of that during a styloidectomy procedure is usually fairly straightforward.
Some of our members who’ve had suspected ICA compression have purchased a soft cervical collar to wear till surgery which helps remind them to keep their head in a neutral position or out of whatever position exacerbates the vascular symptoms. These can even be slept in at night. You might consider buying one. Amazon has a good selection, & they aren’t too expensive. Just search “soft neck collar” on the Amazon site. If you’d prefer to get one that’s more custom fitted, I expect any local medical supply store would carry them.
DDS makes top of the line neck traction collar for EMS, but I use for keeping my neck straight. As a bonus, it lifts up your cervical spine helping create space between discs. It pushes on your chin and back of head to lengthen spine. I tried the giraffe inflatable pillows off of amazon and it only lasted a year (materials leak air). eBay probably has sencond hand neck collars and traction systems for deep discounts.
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I haven’t had good results with a cervical collar (tends to increase pain and even faintness), and now I may know why.
I was poking around in my imaging at the hyoid bone because that area looks super abnormally tight on the left when I swallow. I also get clunking up there sometimes. I found what looks like ossification in the ligament running from the back of my left hyoid down to my thyroid cartilage. My ENT confirmed it does indeed looking like bone in the ligament. So when I put that collar around my throat, it may be increasing nerve compression in those areas.
This week, I cancelled three long-awaited upcoming medical procedures that I had really hoped would help me. After consulting with my ENT, he said that given the likely calcification in both my jaw and throat, I needed the higher resolution imaging (3D CT venogram) and to have it reviewed by Dr. Constantino first. I cancelled trigger point injections for my shoulder, getting my tongue tie cut, and an endoscopy/colonoscopy. Dr. Constantino’s office submitted an insurance request for the scan nearly two months ago, but I just found out that since they submitted to the NY branch of our insurance but my husband is working remotely for a Washington based company, the request just sat there for weeks until I happened to find out that they never received it. Now we have to start all over. I feel like I’m in some hellish comedy. Nearly every step of my care has been delayed and delayed.
Here is a (sideways) photo of the potential calcification below my left hyoid.
I’m sorry the cervical collar made your symptoms worse instead of helping reduce them some, but great job sleuthing out the reason for that. I’m sorry you have additional calcification between thyroid & hyoid but I’m glad you caught it now & not after having ES surgery!
How FRUSTRATING about your insurance situation. I hope you can push them to expedite the approval for you to see Dr. Costantino ASAP!! If you’re able, give them a call several times a week to check on the status. It’s ok to be annoying when they’ve ignored you for so long.
If Dr. Costantino won’t deal w/ the ligament calcification below your hyoid, Dr. Dewan in Louisiana will. She specializes in hyoid bone & thyroid cartilage surgeries. I know you’d prefer not to travel, but it might be necessary to get an extremely rare/unusual situation taken care of.
Please let us know when you finally get an appointment scheduled w/ Dr. Costantino & how your appt. goes.
I’ll pray for your insurance approval to come through very soon.
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That’s so frustrating for you @Ifrit , I hope the insurance gets sorted soon & you can see Dr Costantino soon, & get the other treatments as well
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