re: OT Med Folks--My Docs are Stumped

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"Other possible causes include fibromuscular dysplasia, fibroelastic changes of the intima, cystic fibrosis of the media and connective tissue diseases, such as the Ehlers-Danlos syndrome"

I didn't read through the whole thread but it does sound like an interesting case. Just to clarify some of your story: it sounds like you had a bruit (whooshing pulsatile sound heard with a stethoscope) on the right of your neck which was found to be a blockage in your carotid. You had an endarterectomy which showed not - typical plaque but rather signs of inflammatory thickening of the arterial wall causing the blockage. It has closed again but you are doing ok because of good collateral flow from the other carotid and the vertebral arteries.

It sounds to me like you may need a work up for possible causes of vasculitis. You are pretty young to be dealing with an atherosclerotic plaque buildup of that magnitude to cause a blockage and no chance it can restenose that quickly after surgery. There is definitely something inflammatory going on. You should be getting tests like a C reactive protein (CRP) to investigate for inflammation as well as tests for autoimmune causes of inflammation. Also your blockage was a slow developing condition given your development of collateral circulation - that only takes place over a longer period of time.

My advice is to seek further consult with a vascular surgeon specialist who has interest in inflammatory vascular disease processes. Chances are you may have to go a university type hospital for this sort of subspecialization. Good luck.

Please note the above is not competent medical advice - I could just be a 14 year old who can use google and webmd.

Have they done a MRI of the area?

Do not frick around in the backwater of the Southeast USA. Clear your schedule and go to the Mayo Clinic in Rochester, Minnesota.

They will not let you leave until they have answers for you. It may take a day, or you may be there a month. Doesn't matter.

I had a similar situation 15 years ago. Went to the Kirkland Clinic in Birmingham. The first doctor checked me out and did some tests. Came back and said: I don't know what it is, but it's not what I handle. I'm a surgeon, and you're not a surgical candidate. And then he walked out of the room. And that was that. He left me standing there basically naked, with absolutely no idea where to go or what to do next.

At Mayo, they give you a plan, and an advocate. Someone manages you through the process. If you hit a dead end, they have a Plan B already in place. It's a process to get you a diagnosis, not a medical mall for dickhead surgeons to cruise for their next $10,000 hourly fee.

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All clear on other 3 blood highways.

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Don't know how that sounds to you. On the one hand, as you've not had a stroke, it means those 3 vessels are able to cross-cover for the 4th (collateralization) vis-a-vis connecting vessels in your brain (Circle of Willis). That's the good news. On the other, there are long term ramifications such as need for anticoagulation.

Regarding cause, the vast majority of rapid stenoses following carotid surgery are related to mechanical aspects of the repair. Without knowing more detailed specifics about your surgery, that would be my strong suspicion.

Importantly though, if I understand your dilemma, your carotid is now 100% occluded. Attending to a 100% occlusion is a problem. Without any flow across the blockage, blood clot can form on the downstream/distal side (i.e., the side closer to your brain). If a piece of that clot breaks loose (embolizes), it will lodge in your brain and cause a stroke. So the use of an anticoagulant (i.e., Plavix) is critical.

The possibility of clot being present severely complicates any decision to reopen your carotid. So there is probably little to be done in that area. However, your team MUST make sure the occlusion is actually 100%. A carotid ultrasound/doppler can sometimes overestimate the occlusion. An MRA (MRI-angiogram) should be performed to confirm 100% blockage.

I'd assume that has been done. If it hasn't, you need to access a more expert team. If there is any chance you're not dealing with a 100% occlusion, I'd recommend in the strongest terms getting a 2nd opinion from a different experienced vascular surgeon.

What area you live in?

My carotids were blocked really bad on both sides after it happened from the false lumen clotting off,


Did you have an injury? My GP said dissection would have been seen on CT scans.
Have been through all the labs for vasculitis. The markers are "un-impressive". Hopefully 2-6th opinions will be helpful.

Y'all are freaking me out. I'm almost 47 and per carotid u/s have the arteries of a 60yo. C reactive protein was >6. 5 months on aspirin, vitamin d (levels were low) and omega 3, and retested. Awaiting apt for results.

Good luck to the op. What Carsiologist did you see in Lafayette??