Why my brain?!

Does anyone else have any experience with extreme vascular or cognative symptoms?

So my vascular symptoms have gotten A LOT worse sine my last post.
I even got booted from my shoulder PT because the therapist was concerned I was going to have a stroke of damage my carotid during exercises. She say that whenever I turned my head or activated my neck in certain way my voice changed or I became very confused.

My friend is staying with me now to help me with daily tasks, and she can tell when I'm "stroking out" even before I speak due to my eyes becoming unfocused.

This stuff is getting pretty scary!
I mean.. it was no picnic before, but lately the blurred vision, ringing, and disorientation doesn't seem to ever fully go away.

I can't find an asymptomatic position to be in, and sleeping sitting up makes my neck Worse!
So far, my Doc is perturbed by my hyoid spike, but is only familiar with Styloid elongation.
He agrees it's possible that the calcification is what is irritation my shoulder symptoms, as well as causing the constant gagging, but concerned because there's no hard evidence it's causing the stroke like symptoms. So far my CT or barium swallow gives no hard evidence, but I'm doing more tests to try and confirm something.
Thus far he plans on cutting from chin to ear to dig around and see what's up.

One concern is this surgery won't relieve the symptoms, and the Doc is concerned the previous injury or irritation from the spike may have caused scarring in my carotid. Removal of the bones won't fix this, and depending on where they are, they may not be Able to be fixed. (apparently, the solution is a resection and replacement of the artery which as far as an otolaryngologist knows can't be done too close to the brain).

Anyone have any words of wisdom with the Mind stuff that comes from Eagles? Even better, anyone have some relief from it?

There have been lots of times when doctors thought certain symptoms weren't related to Eagles, but after the surgery, the symptoms were gone. I don't think you need more tests. I think you need to have the surgery. If your doctor won't do it, I think you should go see another doctor. Can you go see Dr. Cognetti in Phladelphia? I think you should see someone who has more experience with Eagles.

When I had vascular Eagles, the doctor didn't believe my symptoms were from Eagles and when they went away immediately after my surgery, he didn't even want to hear about them. But at least they were fixed.

I have vascular ES, but compression of the veins not the arteries. So I've not had the stroke-like symptoms, but have had symptoms of intra-cranial hypertension. I was off balance a lot of the time, felt like I was a bit drunk most of the time (having to concentrate really hard to follow conversations, speak, make decisions etc), had brain fog and was very tired, as well as feeling painful pressure in my ears and head. I don't know if any of these symptoms match yours? But within a few days of surgery these have pretty much completely disappeared. A lot of doctors will say that they're not sure how much surgery will help- but the only way to find out for sure is to have it! I know that with your shoulder and hyoid problems your situation is more complicated, but I would be very concerned and want to have some exploratory surgery to see what is affecting your artery. I think I mentioned in another post the Doppler ultrasound can be used to check blood flow in arteries; perhaps that could be done for you with you getting into the position which affects you most?

There is some research about ES causing stroke/ blacking out- some are mentioned in the ES Info section. It may help you in your decision making, or for your doctor to see.

Heidemt- Dr Cognetti was who I wanted to see if this dr didn’t pan out. It’s really hard for me to be in a car tho and I’m worried about the possible long wait time.
Luckily, while this guy isn’t super familiar with ES, he’s apparently a pretty amazing neck surgeon who works with a lot of delicate cancers. I’d rather not be a surgeon’a First in any kinda procedure, but given the circumstances he seems to be familiar enough with the territory and finding weird stuff in the neck.

Also thankfully he’s already all about surgery. The further tests are to refine his approach and prep him for what he’s getting into. He’s on board with the elongated styloid and hyoid possibly causing the issues, he’s just not sure.

I’m sorry your doctor was one of those infallible jerks, but I’m really glad to hear your symptoms were able to be resolved despite his apathy!

Jules- All these symptoms and a few more with the volume cranked up to 10. It was bad enough they were looking for blood clots in me brain, and luckily that’s how the found the spike.

That’s awesome that you’re on the mend!
Did you wake up from surgery still symptomatic, or did you feel an immediate difference?
(I don’t want to panic for no reason if I wake up and still feel the same after surgery, hahaha)

I’ve got a Doppler ultrasound where I get into positions coming up, so hopefully this will be enlightening. A little worried after the last position CT. The tech had never done a positional CT, had no idea what she was looking for, and had to call a bunch of drs before she started. Then she wouldn’t let me get into pose before starting
(oh and hooked up the contrast iv wrong so it sprayed all over me like a leaky garden hose, but that’s less of a concern than getting a good picture of my neck)

Thanks for the info guys!

I didn't feel an immediate difference- some symptoms were gone but not all, I presume there was still swelling for a couple of days, but it improved a lot after that. Some members have felt immediate benefits, but I guess with all the rummaging around they may well have to do with you that you'll be quite bruised and sore!

I love the way you find something to laugh about- you sound really positive!

Your surgeon sounds like he's giving this plenty of thought- there's been several mentions recently about how neck surgeons often have to remove difficult cancers, and someone (might have been Zdravaka) said that they often remove the styloid process to get to the cancers, so I'm sure he'll be competent. If he can remove as much of the SP as possible will be helpful.

Hope that your other tests go well and show what's going on!