Subarachnoid Hemorrhage, Blood Thinners & Ehlers-Danlos Syndrome?

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Joined
May 7, 2023
Messages
8
Location
Gainesville, FL
I am so pleased to have found this forum! A wonderful resource of information available here. I am a 53 old male that has a bicuspid aortic valve and was recently told, “I need to start preparing for a valve replacement”. I am not an athlete, but have been active, eaten well and have been generally fit, my whole life. Saying this, in my 20’s I started getting tendonitis when working or doing sports. By the time I was in my mid-30’s the tendonitis/inflammation issues were getting much worse. At that time, I had loads of tests done at the Mayo Clinic and it was found that I probably had Ehlers-Danlos Syndrome (EDS). EDS folks seem to have a higher level of heart valve deformities, so this really connected some dots for me. In 2013 I started taking a turmeric supplement to address some inflammation issues and suddenly had an unexplained Subarachnoid Hemorrhage (brain bleed). Luckily it was very small bleed and I recovered just fine. Taking the turmeric was the only thing new in my daily life so I always wondered if this was connected with the brain bleed. Turmeric can act as a blood thinner. Years later I was reading the Smithsonian magazine and there was an article about another person that had a brain bleed and was attributing it to the turmeric supplement. I am not sure if the supplement was the cause, but now facing the valve replacement options and the associated blood thinners, I have doubts about taking something like Warfarin. Since I am in my early 50’s I would like a mechanical valve that will last a long time, but concerned about the associated blood thinners. Is their anyone out there with overlapping health concerns or thoughts on this subject? Thank you, Kevin
 
I probably had Ehlers-Danlos Syndrome (EDS). EDS folks seem to have a higher level of heart valve deformities
had an unexplained Subarachnoid Hemorrhage (brain bleed)

Do you know what form of EDS you have? cvEDS (cardiac-valvular EDS) is more specific to heart valve issues where as there is another form called vEDS (Vascular EDS) more related to arterial aneurysms and rupture. Maybe you have both?

I am not sure if the supplement was the cause, but now facing the valve replacement options and the associated blood thinners, I have doubts about taking something like Warfarin. Since I am in my early 50’s I would like a mechanical valve that will last a long time, but concerned about the associated blood thinners. Is their anyone out there with overlapping health concerns or thoughts on this subject?
I know someone that has vEDS (Vascular EDS) and is on coagulation therapy. Have you also searched or posted you questions on an EDS forum?
 
Do you know what form of EDS you have? cvEDS (cardiac-valvular EDS) is more specific to heart valve issues where as there is another form called vEDS (Vascular EDS) more related to arterial aneurysms and rupture. Maybe you have both?
I have never been genetically tested to know what type, but I tend to think I have a variety of EDS options. A mild case, but not 100% one type or another.
I know someone that has vEDS (Vascular EDS) and is on coagulation therapy. Have you also searched or posted you questions on an EDS forum?
I recently did post a message, but so far no feedback. Might not be the best EDS forum.
 
Welcome to the forum, Kevin. A whole variety of experience and advice here and hopefully some of your questions can be answered.
Just jumping in to wish you all the best as you move forward.
 
Welcome to the forum, Kevin. A whole variety of experience and advice here and hopefully some of your questions can be answered.
Just jumping in to wish you all the best as you move forward.
Thank you for the welcome. I just had two appointments with potential surgeons today. Today is the 1st time I received some measurement values to consider. Valve Area: 0.8cm, Max Aortic Valve Velocity: 4.2m/sec., Mean Pressure Gradient 41mm/Hg, but I don't have too many symptoms, so I was surprised that my numbers were so poor. I feel short of breath when I push myself physically, but not many other symptoms. The doctors I spoke with today would like me to have a Edwards Inspiris Resilia tissue valve as well. They don't want to put me on a blood thinner due to my past hemorrhage. I have 3 more tests coming up in the next few weeks to help shape the next steps. They would like to operate in the next few months. New adventures!
 
Hi

The doctors I spoke with today would like me to have a Edwards Inspiris Resilia tissue valve as well. They don't want to put me on a blood thinner due to my past hemorrhage
Seems a reasonable course of action.

Not knowing sufficient about your details I was hesitant to say much fit the same reasons as then. My concernzls are that you are young and may get under 17 years from a tissue valve (especially if highly active and something else may mandate some anticoagulation therapy in the future anyway.

Best wishes
 

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