Are Carotid Stenosis and Aortic Stenosis related?

[Marguerite53]

Hey there everyone!
I've been away for a long time. I somehow got the vibration to check in back in November when Ross was leaving us and was able to follow all of that. I even remember being up on a Saturday morning and remembering some silly VR discussion (with Ross) about scrambled eggs while I was cooking mine... only to then realize that it was the day of his memorial service. Maybe it's time to join up with the Facebook group so I don't have to count on the universe to tap me on the shoulder!

So I had a rather interesting Christmas which is why I am writing tonight (the hint is in the thread title). On December 21st I was running around getting the house ready for the grown kids to arrive. They had made the airport run to pick up the last kid and were off to dinner out together. I was making beds. I leaned way down into a corner to tuck in a sheet, came back up, felt a rush to the side of my face and realized that I could not see out of my right eye at all. Hmmmmm. Migraine? (I get the visual kind). So I wait awhile. No vision returning. Nada. Call downstairs to dear husband, hey, I think I need to get to the ER (I'm thinking stroke). So he wants to call the Ophthalmologist but it's after hours so we wait a few minutes for a return call. By this time I've looked around this last room and figure it's clean and tidy enough -- I'm outta here -- we're going to ER. The eye doctor actually meets us there in ER. This was a very good move on my husband's part. If general docs in ER had deemed it a stroke and given me the stroke medicine it would have been very detrimental to my progress (though I can't now remember why). Anyway, Ophthalmologist deems it an embolic event (stroke) that somehow (luckily) went up my retinal artery and not to my brain. All I have lost is the retina. It is a permanent loss - my right eye is blind. But we still have to know where it came from so I get checked into the main hospital as my children arrive in ER.

After 4 days and every test known to man (lupus? really? echocardiogram with bubble test -- say what? bubbles?? I do not have a hole in my heart!) I am sent down to imaging (2 MRI's and several ultrasounds) and the culprit is determined to be my right carotid artery. Vascular surgeons are then called in because the blockage is riding right at 70% (determining surgery vs. send you home with meds cut-off). Because the plaque is an unstable squishy kind, surgery is recommended -- fine with me!! So Christmas Eve day in I go in for an endarterectomy with bovine angioplasty (woohoo, more cow tissue). Post op the surgeon tells us that I was actually greater than 90% blocked. Christmas Day at noon, after one night in ICU they release me to my family (straight from ICU which was overfull due to flu patients) and I was able to come home and enjoy Christmas (with my new, 5 inch badass scar down my neck -- kids called it that).

I have learned a lot about everything since then (most especially about family love). In hindsight I was having trouble focusing mentally and might have been a little dizzy now and then, but clearly, not enough to bother a doctor about. The carotid on the other side is pretty clean. The right one was anatomically predisposed to clogging up, they think. I am overweight, have had a long-lived love affair with butter (now over) and had gone off my blood pressure meds (with doctor's permission). I did not take any statins though they had been recommended to me due to mildly elevated cholesterol. Every doctor encountered in my hospital stay said that I was not, not, not a stroke candidate. My numbers "did not present as someone" at risk of stroke.

So my question to you guys out there is.... has anyone else had experience with carotid surgery? I'd love to hear your story.

Because if it is something that they need to delve into further (I have googled and found a few studies) then I want to get back on this forum here and make sure that everyone with Aortic Stenosis has their carotids listened to carefully at exams, and possibly give a thought to requesting ultrasounds.

And if there are any other "one-eyed Wanda"s out there -- please shout out and say hello!! It's been 2 months now and I'm still not driving. I'm probably going to get a prosthetic contact lens to block out the remaining dancing light in my blind eye (completely opaque lens). Other than that, it's a lot of dumb blonde jokes as I run into walls in the house or pour coffee on the kitchen counter (no depth perception), but I really am adjusting just fine. I'm on a bowling league and after the mandatory 6 weeks off (post surgery) I've come back with a roar and am bowling 40-70 pins better than average each week!! haha! Crazy good!

It is what it is, eh?

Thanks for listening.

Marguerite

 

[Duffey]

Wow, Marguerite, this is one heck of an experience you are relating with your return. I am very sorry to read that you lost your sight in your right eye, but you are coping well as evidenced by the humor in your post. Did you have an ultrasound of your carotids prior to valve replacement? I did, and I assumed most valve recipients did, however, that might be a faulty assumption on my part. My cardiologist does listen to mine when I go in for my annual exam but I am late on my exam, so maybe I will quit messing around and get it scheduled.
I really know next to nothing about under going an endarterectomy so I hope you will post more about the experience. Have you looked at the BAVD foundation to see if they have any studies that suggest a link between the congenital bav and likelihood of stenosis of the carotids? Perhaps that is a dumb question, but if so, it reflects my lack of knowledge in this area.
Looking forward to future posts as you move along with the process.

 

[Superbob]

Wow, Marguerite -- what an odyssey! Great to see you back here but sorry about the circumstances. Glad you seem to be coping well and moving ahead. Hope all continues to go well now.

 

[ottagal]

What an ordeal you have been through, indeed! I don't recall reading any correlation between the two conditions, but that doesn't mean it doesn't exist.

A cousin underwent a carotid angioplasty about 5 years ago and from what I recall did very well with the procedure. Unfortunately, I don't know the details as I don't see her very often and she lives quite far away.

Hope everything gets sorted out for you and that all goes perfectly for you.

 

[Bina]

Holy Smokes, Marguerite, that is a very scary experience to go through; especially doing it on Christmas in the ER.
I'm so glad to read that you have come through this and are coping quite well.
My own carotids are not often checked these days and i have history of visual migraines/auras, along with dizzy spells and blurry vision on occasion. Maybe this is one time that I can
be thankful for having to take Coumadin for my valve; or maybe it wouldn't make any difference if the carotid decides to block. Interesting topic to look into further.
I bet that you are really rocking that bad-ass scar and would love to see it one day

 

[DebbyA]

Hi Marguerite. I've missed your presence here, but am truly sorry for the situation that brought you back. Sorry I know nothing useful to you, except it appears that carotid stenosis is more likely akin to coronary artery disease than to aortic stenosis.

 

[Marguerite53]

Thanks for the warm hellos, you guys!
Hadn't thought to check the BAVD foundation for links -- I'm going to do that, Mary, thanks. I don't remember (almost 8 years now! woohoo!!) whether anyone ultrasounded my carotids pre-valve surgery. There is a sound called a bruit (pronounced broo-ee) that can be heard sometimes when the carotids are between 40-70% clogged. I guess that's what they listen for when they run the scope up our necks at the cardiologists.

The surgery was pretty straightforward. Luckily I had a great surgeon on-call Christmas Eve. Basically they just clean out the bad stuff and then attach some bovine tissue as a patch outside the artery to allow the artery to be full size diameter again. If they just stitched up after their work, it would shrink the diameter so the cow tissue allows for a more original diameter while still patching things up safely. They cut through a lot of nerve endings and tissue to get there, so you go through the same tenderness, tingling, numbness in the neck and jaw that we all experienced post VR in the sternum area. At almost 2.5 months out, my chin and jaw are still numb -- kind of like just after the dentist with lots of novocain. Doesn't interfere with anything, just a little weird to the touch; it has dissipated a lot from the first few days. The first night in ICU I had a whopper headache, but I think I was totally dehydrated and just whomped from all the anesthesia. It is a no big deal surgery except for the risks for dislodging more plaque, but I never worry about risks if they are doing something that will save my life (duh!).

Bina, the whole vascular thing is curious to me. We all have our thing, like red wine gives me a headache, or cooked spinach makes my mouth feel funny, etc. etc.. What about visual migraines. Could they be a clue? I wonder.

Well I'll do some rummaging around and come back to report anything I find. I have found some studies about the "pathobiology of aortic stenosis now is recognized to have many similarities
to that of atherosclerosis" from 2010 (I think they were interested in whether statins could help stop the progression of AS).
Later, then.
Marguerite

PS. don't know how to put in a photo if it's just in my computer.....??

 

[Duffey]

Marguerite, adding a picture from the computer is pretty easy. Go to Advanced, click on Manage Attachments, click Add Files, click on Website, and that should open your computer files. Pick the photo you want and download.

 

[va66]

Hi Marguerite:
I just wanted to say how good it was to see a recent post from you. We've missed your presence here. I was so very sorry to learn of your recent hospitalization with the permanent loss of vision in one eye. I see that you are coping well? Please post more so that we can learn of your progress and findings on the connection you were looking into.

Best regards,
Va. 66

 

[Marguerite53]

Thanks, all.
I've been hoping to get somewhere with my Googling and asking around and am gathering to put it all into one reply. It will be interesting to talk to my GP on Thursday (annual physical) and then to my new cardio next month. Mostly at this point I'm kind of wanting to know... if you are asymptomatic then which kind of doctor is supposed to be watching out for this kind of thing for you? When are doctors going to start having the sweet new portable ultrasound machines (dinky, phone-sized ones are coming to your favorite doctor someday) and newly trained techs to go with them?

One interesting thing -- if you ever have a dentist/oral surgeon type doctor give you that complete panoramic Xray (where I think you stand up and it goes around you?), make sure to ask them to look at the area around your carotids. Calcification can show up on those (I will link that report in a later reply since I forgot to save it and need to find it).

BAVD Foundation had nothing (except a totally lovely note back to me!)

I am doing well. Kind of chomping at the bit to get that custom contact lens now that the measurements are all done. It's just a normal clear contact but the pupil area is a black circle (the average diameter of my own pupil in darkish and brightish light). The little patch of vision, like a paper tear, is low and far right. As a car passenger, at an intersection, traffic on the right comes into my vision twice; somewhat delayed. Just not safe for judgement purposes. Definitely just want to black that out completely and get on with it (much as I love that I can still see an eeensy little bit out of that eye -- it will never improve -- my brain is really trying to work with it but it just isn't enough to make it feasible for most daily activities .

More later.
M