Stroke while having ES

Has anyone ever dealt with an inflamed carotid artery? My right side is completely blocked after my 1st stroke in Septmber 2021 but I have had severe pain on that side radiating from my ear down my neck and shoulder since March 2021 with the only relief coming from a steroid (no gabapentin, tramadol, flexeril, extra strength tylenol/advil, nothing helped) We are going around in circles with vascular, cardio, ents, and rheumatologists not having any answers. I’ve been on the steroid since March 2021 and have gained sooo much weight I’m more depressed from that aspect than any of my stroke symptoms…
I did do a consult with dr Samji who said my styloid is long and unusually thick but that may not be causing the pain and because of my strokes it would be risky to do the surgery and may not even help with the pain. I started the process of getting into Samji after the pain wasn’t resolved with TMJ therapy and the other pain meds, but he wouldn’t even do a consult since I’d had the strokes and he wanted me to get my artey checked first. I’m just so tired of the pain and weight gain.

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I’m really sorry Dr. Samji isn’t willing to work with you though I understand his reason is likely that he doesn’t want to do anything that could make your situation worse. If your insurance will cover it, Dr. Damrose at Stanford is also very experienced with ES & especially vascular situations. He was Dr. Samji’s mentor some years ago. Dr. Damrose & Dr. Samji do have differing perspectives on ES so you might find help & support from Dr. D that you didn’t get from Dr. S.

I am not a doctor but feel fairly certain that having your styloid removed as close to your skull base as possible will make a hug difference for you especially because it’s thick. The thickness alone is likely causing nerve irritation along w/ the internal carotid artery symptoms. The steroids are serving to help reduce inflammation but are obviously not a cure. Getting rid of the cause of the inflammation is what will allow you to recover.

I sympathize w/ your situation w/ the steroids. i have fought the weight battle all my life & it’s so FRUSTRATING when health challenges put us on meds that exacerbate that problem. I’ve been there w/ Prednisone myself.

I will be praying you can find a doctor who is willing to be proactive to help you soon! Always ask to be put on a cancellation list if your appt is scheduled some distance in the future. This can expedite getting an appt sooner.

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I’m so sorry that you’re in so much pain & have had a stroke, that’s really rough…if the styloid is putting pressure on the carotid artery it could cause a stroke and can cause pain along the artery. Are you on any blood thinners since the stroke? There are other nerve pain medications which might be worth trying, Lyrica, Amitriyptyline , Carbamazepine for example, and some people have been helped by a steroid injection into the tonsillar region- as steroids have helped before this might be worth a try? An ENT can do this, sometimes under ultrasound, which might be best as there’s vascular involvement, it might be better than taking steroids orally?
It’s such a shame that Dr Samji won’t help you, I don’t know whether it’s possible for you to travel at all? If so Dr Hepworth in Colorado is very experienced with vascular ES, although he does have quite a wait. Dr Milligan in AZ is an experienced ES surgeon too, I don’t know if he would help?
It would be interesting to know what the vascular docs you’ve seen think is the problem, do they acknowledge that the styloid could well be the issue? Have you had a CT with contrast?
Sending you a hug, I feel for you :hugs:

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