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Message
re: OT Med Folks--My Docs are Stumped
Posted on 5/20/16 at 9:35 pm to game blouses
Posted on 5/20/16 at 9:35 pm to game blouses
quote:
year lurker. Feel so familiar with most of you had to start new account just to post...anyways
36 year old male , maybe 5lbs overweight
March 2016 Annual wellness check discovers a bruit on right side neck
Ultrasound and CT dye scan shows 75% blockage. Docs recommend endarterectomy Procedure performed April 2016
Now here's the trouble--after surgery Doc sais "You looked different in there then what I always see" (He does about 6 of these a week). He sais "you're muscle and fat was very stuck together , a sign of inflammation , then inside you're artery where I Expected lots of plaque, you had some plaque and lots of inflamed tissue , but oh well you are 0% blocked now and good to go. See you in 6 weeks"
Six weeks later new ultrasound and CT dye scan show 100% blockage. Only the left side carotid along with vertebral veins are supplying blood/oxygen to brain
Multiple labs , no high inflammation markers noted
So what now? Hate to start over with more Docs just to see them scratch their heads like my current docs are. Need a Doc who has seen this before
1. Did you doctor tell you a diagnosis or a more specific details about your problem?
2. What kind of doctor did you see for this?
3. Have you researched vasculitis to see if that fits any of your symptoms or what your doctors told you? vasculitis
ETA: I see others have already mentioned it and you said the labs said no. I would follow the advice that some others gave, and see a rheumatologist ASAP.
This post was edited on 5/20/16 at 9:50 pm
Posted on 5/20/16 at 9:36 pm to LSU Wayne
Ehlers Danlos doesn't cause carotid stenosis.
Posted on 5/20/16 at 9:44 pm to LSU Wayne
Carotid dissection is different than what the OP is talking about.
Posted on 5/20/16 at 10:34 pm to game blouses
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.
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.
Posted on 5/20/16 at 11:20 pm to game blouses
Also, you should contact Retired Trucker immediately.
He has a panacea salve you can just rub on it thats way better than anything you could get from us dumb ole doctors
He has a panacea salve you can just rub on it thats way better than anything you could get from us dumb ole doctors
Posted on 5/21/16 at 12:49 am to game blouses
Have they done a MRI of the area?
Posted on 5/21/16 at 2:47 am to tigerpimpbot
quote:
Whoever said to find the best rheumatologist earlier in this thread was spot on IMO. That's what I would do.
This is the correct answer. This sounds like some sort of rare rheum issue. A surgeon is probably not who he wants investigating this from all angles. This is not me talking bad about surgeons, but the work up for this should be done with someone like rheum who deals with rare issues like these routinely.
This post was edited on 5/21/16 at 2:52 am
Posted on 5/21/16 at 3:50 am to game blouses
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.
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.
Posted on 5/21/16 at 4:06 am to game blouses
quote:
putting me on Plavix.
Be careful on Plavix.
My ex-brother-in-law was on blood thinners and fell. He hit his head and bled to death.
No one could get in touch with him. When he was found, the cops thought he had been murdered.
Posted on 5/21/16 at 5:09 am to game blouses
Alter eh, is this Diddy?
Posted on 5/21/16 at 8:12 am to game blouses
quote: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.
All clear on other 3 blood highways.
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.
This post was edited on 5/21/16 at 8:21 am
Posted on 5/21/16 at 2:02 pm to Womski
quote:
However, if that doc misdiagnosed you, you may have grounds for a lawsuit. If you want to discuss options and potential settlements, let me know.
You bloodsucking lawyer piece of shite.
No wonder ambulance chasers like you are so fricking hated.
Posted on 5/21/16 at 2:24 pm to game blouses
I am dealing with a similar situation, but from an aortic dissection. My carotids were blocked really bad on both sides after it happened from the false lumen clotting off, I went from about 70 percent to almost 100 percent blocked in about 2 months. I recommend a second opinion because one of the best vascular specialist in Houston would not touch my carotids because I was high risk. I went to my surgeon at the Lake who saved my life the first time and they were able to put a stent on my left side. I am about same age as you.
Posted on 5/22/16 at 1:22 am to LSUballs
(no message)
This post was edited on 5/22/16 at 1:29 am
Posted on 5/22/16 at 12:09 pm to rantfan
Laffy.
Going to a local Cardiologist Tuesday
Awaiting appointment call back on Mayo Clinic
Will search a Rheum on Monday
Going to a local Cardiologist Tuesday
Awaiting appointment call back on Mayo Clinic
Will search a Rheum on Monday
Posted on 5/22/16 at 12:14 pm to game blouses
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.
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.
Posted on 5/22/16 at 12:15 pm to game blouses
Dude don't let the previous posters comment scare you into going to the mayo clinic. There are plenty of great, competent doctors way closer
Posted on 5/22/16 at 12:21 pm to game blouses
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??
Good luck to the op. What Carsiologist did you see in Lafayette??
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