BAVD, Valvular Strands, and Stroke....

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Arlyss

Well-known member
Joined
Nov 7, 2002
Messages
447
Location
southern California
Sixteen years ago my husband had a severely calcified stenotic bicuspid aortic valve replaced with a mechanical valve. He was extremely sick then, in full congestive heart failure with really no warning other than developing pneumonia. Removing that constricted valve was a great relief to his heart! He recovered from surgery without complications, was given no exercise restrictions, and adjusted to coumadin well. His left ventricle fully recovered... Life returned to normal, and it did seem this could be a life long solution for him.

Looking back now, I think of the complexity of getting that first new valve into a very calcified area. I don't believe it was an easy procedure. I was warned before he woke up that he might have had a stroke due to the heavy calcification - there was high risk of particles going to the brain. But he was fine then.... I think now about how important that very first procedure was - because it set the stage for what would happen later.

It was eleven years later, in 2001 that an ascending aortic aneurysm was "discovered".... A second time the sternum had to be opened to save his life. The mechanical valve appeared to be working well, and there had been no issues with coumadin. So there was no reason to expose him to the added risk of changing out the valve, and the mechanical valve stayed in place.

Then in 2004 a new murmur was heard in his chest. The mitral valve had developed a leak, and the mechanical valve had an increase in the pressure differential across it. Blood wasn't flowing through the mechanical as easily as it had before......why? It was opening and closing well. Possible scar tissue forming on the mechanical? So now we were watching two valves......

So we were living with the thought that perhaps both the mechanical and the mitral could mean another surgery at some point. Without warning, six months ago now my husband suffered an extensive stroke. His INR, checked just the day before, was perfect. It was also in range when checked in the ER. Locally they had no idea what caused the stroke - the mechanical valve still appeared to work well on echo. However, later testing in a major center showed strands of tissue attached to the "heart side" of his mechanical aortic valve. These fine hair-like strands of tissue have been associated with stroke, but they are difficult to detect and relatively little is known about them. Surgery to remove the mechanical valve needed to happen before he had another stroke. Now there was a greater risk if the mechanical valve stayed in place than in removing it.

So, four months ago, for the third time he had open heart surgery - the mechanical valve is gone and the problem with the mitral (calcification on a leaflet) resolved. It was very difficult to replace the mechanical aortic valve - the aortic root needed to be enlarged with a patch - bovine pericardial tissue was used to patch it. And calcification/debris had to come out to make room for the new tissue valve. Not an easy procedure at all, but it went very well in expert hands. The last look into his chest, a few weeks ago, showed the new tissue valve and the mitral valve working beautifully. And now there is a track record for his new tissue valve that gives hope that it may last as long as he needs it.

Today I want to tell others about these strands. What we did not know, and I would like others to know, is that if the pressure difference across a prosthetic valve increases, it is important to look for these strands - and the only way to "see" them is by TEE or transesophageal echo. I hope knowing about this will spare someone from having a stroke. I have heard that 2% of those with mechanical valves have unexplained strokes - I have not been able to confirm that statistic - but these strands likely explain some of them....

Here are some references

http://www.ncbi.nlm.nih.gov/entrez/...uids=12514645&query_hl=38&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/..._uids=9692533&query_hl=35&itool=pubmed_docsum

Best wishes,
Arlyss
 
Arlyss,

If his INR was within range, what does this mean in terms of anticoagulation ,and does it then challenge our assumption that it will dissolve clots/calcification if they break loose?
 
Mary said:
Arlyss,

If his INR was within range, what does this mean in terms of anticoagulation ,and does it then challenge our assumption that it will dissolve clots/calcification if they break loose?

Coumadin does not dissolve clots, but prevents them from forming. Or am I misunderstanding?
 
JimL said:
Coumadin does not dissolve clots, but prevents them from forming. Or am I misunderstanding?

I need to rephrase the question, because I don't know much about coumadin (which is why I asked!) :rolleyes:


Arlyss,

If his INR was within range, what does this mean in terms of anticoagulation ,and does it then challenge our assumption that it prevents clot formation?
Thanks,
Mary
 
It sounds to me as though it were these fine, hair-like strands of tissue, not blood that was responsible for his stroke? Do they feel these strand broke free and caused his stroke, similar to when a person with endocarditis has vegetations on his valve, and these vegetations can break loose and cause a stroke? INR/Coumadin would not have helped my husband in this manner was my understanding.

Thank you so much for posting your husband's story. Very scary, and I am so glad to hear he is on the other side of this. May I ask, how did the transition go from being anticoagulated to not being? Nathan chose his mechanical valve in hopes that he would never need another surgery, and also hoping to avoid any further heart damage; In the event that he needs a reop again in 20-30 years, he would probably go tissue (reverse order to what alot of people think :) ) I had never asked, but wondered if there would be any vascular changes that he would be at a higher risk having been anticoagulated for so long.

I have also been noticing that there appears to be a rather large population that needs aneurysms repaired after AVR. I am wondering what the % of people really are?

Thanks again for your story.....

Ann
 
Re. Questions about my husband's anticoagulation

Re. Questions about my husband's anticoagulation

When I found my husband, collapsed on the floor, I knew immediately that he had a stroke. After living so many years with an awareness of the risk of stroke, in spite of his never having any problems due to coumadin - I immediately thought it was either a blood clot or bleeding in his brain. These are the risks related to anticoagulation. It was a blessing that his INR had been checked the day before, so there was no guessing about it. In spite of the shock to his body, his INR was still good in the ER!

The CT and MRI of his brain showed clearly that the stroke was "embolic" or particles blocking/narrowing the arteries in his brain. It was not from bleeding.

I spent a lot of anxious days waiting for him to get well enough to get to a major center where he could be tested further. The TEE showed the strands, which are so fine that surgeons cannot see them in the surgical field, even with their magnifying eye wear! A 64 slice CT showed some additional detail, but did not show the strands. We have wonderful diagnostic testing today, but it sometimes seems to be barely enough for complex situations!

These strands are tissue - the medical papers spend time talking about the different compositions possible. If they break off, they flow through the arterial system, so one can picture how they get up into the brain.

Yes, they are similar in effect to what can happen with endocarditis. In fact, I know of someone with a mechanical valve in place roughly the same number of years as my husband who developed endocarditis and also was found to have strands hanging off the valve - I am very glad that this person got the valve out in time to avoid a stroke.

Both of the references I listed are from Mayo. The abstracts do not give too much detail, but they are very descriptive if you read the entire paper. A helpful tool to share with doctors who likely will not have heard of this....

We found they had to be very careful taking my husband off coumadin, for two reasons - because of his stroke and because of the complex surgery he had. There were rough surfaces after his surgery - including the decalcification that was done, and the suture lines - so it takes time for that to heal and be coated by his own cells. He was started on baby aspirin - but had a TIA - so then was put on Plavix and coumadin was added back. His INR is maintained quite low, but it has prevented any more TIAs.

However, generally speaking it would seem coming off coumdin should not be a problem....

Failure to look for and recognize aortic aneurysms in those with BAV is a great concern to me. Today I know that my husband's aorta was enlarged at the time of his first valve surgery, but we were not told. This link may be of interest

http://bicuspidfoundation.com/The_View_From_Here_-_June_2006.html

Based on our experience, I recommend keeping track of the pressure gradients across the valve from each echo that is done. If the gradient increases - indicating the blood is not flowing as well - ask for a TEE to look for these strands as part of the investigation into the cause....

Best wishes,
Arlyss
 
Valuable Info

Valuable Info

Arlyss, Sorry for your husband's troubles. Thank you for sharing his story. I think it's potentially life saving information. All the best to you both, Brian
 
Mitral Valve

Mitral Valve

Hi Arylyss
I am very sorry to hear about your husbands problems. He must be a very strong person to keep recovering all the surgerys.
I had a mitral valve replaced in 1983 with a B-Jork Shiley. It was recalled about 6 years ago due to strut fractures. I still have mine but now I also started having atrial fib. I found your article very interesting. I know your Doctors can't tell you everything but I didn't know about these strands. it really is a scary situaton. I have been on coumadin of course for this length of time also. Fortunite enough I haven't had any problems with bleeding. It is good to know about things to look at for.
So far the cardiologist thiks my valve is doing great I just to continue with afib. If for some reason I have to have my valve replaced again I think I will go witha tissue valve. My sister had to have one put in a year ago. I believe it was from a cow. Thanks very much for your information, good luck to you and your husband.;)
 
Pioneers Together.....

Pioneers Together.....

Thanks to each of you for your kind words. If one knew ahead of time what we might face, we would say we could never do it. But when the time comes, we find out that we can....

I will need to look at the "strand" medical papers again and see if there are details about the pressure gradients, types of valves affected, etc. It may be difficult to predict too much about these strands yet because there is relatively little information....

Arlys
 
Since I hardly ever look at any forum other than anticoagulation I didn't see this before. It looks like it is going to be revived, so I'll stick my nose in...

Warfarin cuts down the risk of clots - it does not eliminate the risk. Warfarin does nothing about calcification - as far as we know. If these were tissue strands such as pieces of his body growing in the wrong place, I doubt that there is any proven treatment.
 
Arlyss,

Thank You for writing this very informative post.

I'm curious, what kind (manufacturer) of Mechanical Valve did your husband have?

'AL Capshaw'
 
Valvular Strands - Very Fine, Hairlike Structures

Valvular Strands - Very Fine, Hairlike Structures

We are very much out on the frontier with valvular strands. It is mostly unexplored territory with more questions than answers. But there is enough information out there now to take actions that can make a difference!

Generally, these strands have been found after a stroke or TIA, when looking for the possible reason. We need to start finding them before.

1) Increased pressure difference (gradient) across a prosthesis

The paper below (full text) was published last year regarding understanding and follow up of any prosthetic valve - tissue or mechanical. It includes the topic of valvular strands and mentions some rules of thumb for pressure gradients.

http://www.bicuspidfoundation.com/Evaluation_of_Prosthetic_Heart_Valves_Van_den_Brink.pdf

I encourage you to share the above with the physicians who follow your prosthetic valve, no matter if it is tissue or mechanical. Talk about the best way to check on your prosthetic valve with your doctor!

2) Coumadin/warfarin
My husband's INR, done the day before his stroke, was 2.8 In the ER his INR was 2.3 That recent information was very fortunate, because it would be logical to think, in the absence of bleeding in the brain, that his stroke was caused by a clot from the mechanical valve.

My husband had years of history on coumadin (15.5 years) with no problems.
Like anyone else, he needed to be adjusted back into range from time to time.

Locally, I was told "We don't know what caused your husband's stroke". Therefore, there was no thought of replacing the valve from the local physicians involved. His INR was run higher after the stroke as a precaution, but no one knew at first what had really happened.

Running my husband at a higher anticoaguation level would have done nothing about the strands. The paper above makes that point clearly.

At least today we don't need to live through what would have happened if his mechanical valve had been left in place. So, I encourage you to pursue expertise and doctors who will partner with you - I know it is hard to travel out of the local area for some, but it could make all the difference in your life!

3) Treatment of valvular strands
It is not known why these tissue strands form - pannus ("scar" tissue) may or may not be there also. There is no known medical treatment for tissue strands. There is treatment - surgery to remove the valve.

Clearly, surgery should be done before a stroke happens. But remember, we are on the frontier where few physicians have heard of them, and even fewer have properly identified them on a TEE! They cannot be seen by the surgeon's eye during surgery. Only a TEE will find them. Only if the eyes reading the TEE know what they are seeing.

4) Types of valves

One of the valvular strand papers listed some information about types of valves and incidences - I will need to look up my paper copy of it.

In the meantime, I can tell you that I personally know of four people with strands who have had surgery to replace them - my husband and 3 others over the last few months. All of them involved the aortic valve. All of them started life with a bicuspid aortic valve.

One was a St Jude valve and the strands (strings of "vegetation") were due to endocarditis. That is a known risk for stroke - vegetation breaking off and going to the brain. The vegetation can be on the valve surface, or hanging in strings, like this case.

One was a St Jude valve, in place less than 5 years, and the person had experienced TIAs. It is so easy to think of improper anticoagulation, but no, there were the strands!

Two were Hall Medtronic Valves. Both had been implanted over 10 years. Both individuals had initially unexplained stroke prior to removal.

The papers from Mayo mentioned earlier in this thread give examples also, but the details are not found in the abstract.

I told our local internist about valvular strands and the cause of my husband's stroke. He got a strange look on his face and told me about someone else - a "bicuspid" who also had a mechanical aortic valve for many years. This person needed work on his mitral valve. He also had had stroke/TIA, presumed to be from clots on the mechanical valve. So while working on his mitral, he chose to have his mechanical valve replaced with tissue also. Could it have been strands on the aortic mechanical that gave him problems? No one knows that now, but it is a very logical question.

I do hope this helps someone.

Best wishes to all,
Arlyss
 
Perhaps just to make this clear:

It is very possible to miss the reason for stroke/TIA, especially with a mechanical valve.

It is too easy to assume improper anticoagulation and a "non-compliant" patient.

Some subset of strokes/TIA are caused by undetected strands.

Strands can be detected (and strokes prevented) if

1) A history is kept of pressure gradient changes from one echo to the next - (you can do this for yourself, by keeping a chart of the pressure gradients from each echo)

2) TEE is used to look for strands as well as other problems (carefully examining the valve in general) when changes in pressure gradient indicate (see the paper above, although rules of thumb should be thought of as just that and nothing more)

Arlyss
 
Hi Arlyss:

This is SO much information and SO very valuable! Many, many thanks go out to you. I, for one, am going to make sure both my surgeon and my cardiologist get this information. It's hard for me to believe that you (and others like you) have taken the time necessary to gather all this data together and make it available to all of us and understandable to boot! It's wonderful, giving, caring people like you that make this site such a tool for the rest of us. THANK YOU!!!

Jan
 
Hi Arlyss -

Thank you for this detailed information. And thank you again for so much helpful information you share with this site in connection with your and your husband's experiences. It is greatly appreciated. Best wishes and take care.
 
Hi,

I'll add my thanks for this valuable information. Gives me something else to talk to my new cardio about when I see her this week.

Of course me being the Queen of Self Diagnosis : ) this sent me scrambling for the copies I have of my echo reports. If I read this paper right there is only reason to suspect a problem if the mean pressure increases significantly while the valve area decreases. My Aov mean gradient has gone from 17 mmHg in 2005 to 20 mm Hg during the echo I had last month. The peak pressure has increased from 27 mm Hg in 2005 to 34 mm HG this year. My aortic root size has decreased from 2.6 to 2.5. So as far as I can tell I have nothing to worry about.

Again, thanks for the terrific information. Much appreciated.

I hope everyone is doing well.

Cheers,
Michelle
 
Some Additional Information re. Strands

Some Additional Information re. Strands

The following is quoted from "Mechanical prosthetic valve-associated strands: Pathologic correlates to transesophageal echocardiography" by J. Rozich, and other authors from Mayo Clinic, published 2003. This paper describes a woman who had a mechanical valve in the aortic position for 16 years who was found to have both pannus and strands.

"Futhermore, diagnostic criteria have not been developed, and there is marked interobserver variability. Considering this variability, defining the incidence of prosthetic strands is difficult, but it has been reported to be 18% to 43%. Strands appear to have been observed more commonly in association with mechanical, as compared with bioprosthetic valves.....

Mechanical valve-associated embolic events have been reported to occur at rates of 1% per year despite therapeutic anticoagulation. However, whether prosthetic valve-associated strands play a role in cardioembolic events remains speculative."

There are some papers published earlier than this one that indicate that strands have been found on both tissue and mechanical valves, more commonly in the mitral position than in the aortic. However, the data is limited. They are not visible to the eye of the surgeon. They would not be detected by autopsy either.

I hope this helps others in partnering with physicians on valve follow up.

Best wishes,
Arlyss
 

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