Mayo Clinic Connect
Anyone have this non operable problem according to doctors and tests.its called aortic stenosis
Liked by Teresa, Volunteer Mentor, onthego3
Hello @onthego3 and welcome to Mayo Connect. I’m sorry to hear of your aortic valve calcification. While I do not know the specifics of your condition, I’ve been under the impression that Aortic Stenosis is treatable with surgery, however, perhaps your situation has some exceptions. Have you sought a second opinion? I don’t know what part of the country you live in, but you might seek a large university medical center for a second opinion. Please share with us some of your symptoms and the history of your valve problem. We look forward to getting to know you better and once again welcome to this patient-oriented website!
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Hello Kanaaz,i had severe stenosis in my aortic valve. I had it replaced in July of 2016.I had the Direct Flow valve,which incorporates a polymer frame which is expanded using saline then polymer once in place. no metal. it is a double ring design. Frank
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
I have recently been told that my aorta is calcified. Is that the same as Aortic stenosis? And is that always a valve problem?
@hopeful33250 I was diagnosed by a chest x-ray. I haven’t discussed it with any doctors because I wasn’t even aware of it until I got home from the hospital and read it in the report from my emergency room visit. No symptoms just referencing a test result.
WHAT requirements and why??
Wherever you go make sure that your physician does lots of these procedures. I am not sure whether everyone who needs an aortic valve replaced is a candidate for TAVR or transcatheter valve replacement but you should certainly make sure that you are a good candidate and that the interventionalist you are seeing thinks that you would be a good candidate. Otherwise you may need to look at open heart valve replacement. I think it is always best to research your options for a few days at least and not just jump into anything unless it is immediately life threatening. Valve replacements are usually considered elective surgery so you should have a little time to find the best for your case.
Have you visited the website valvereplacement.com? They have a very active community over there and may be able to give you some good feedback.
Best of luck to you.
All I hear is "you may not be a good candidate for TAVR" or "the government won't pay for it" WHY?? How can a less invasive solution be WORSE than cracking someones breastbone and cutting a 25cm long opening? PLEASE tell me – I am scheduled for open heart in 2 weeks and no one will consider TAVR! Just say government will not allow it!
I am a 73 yr. old woman diagnosed about 5 yrs. ago with Aortic Stenosis. Last week my cardio said it was time for my replacement. He said because I was still “young” and in good health (walk 3 miles a day) that I should go for the traditional (open sternum) procedure. He also suggested I do it locally but decided to find the best doc and hospital available and am planning on making an appointment at Mayo. I live in OR, so logistics are complicated, but still think getting the best is worth it. And after doing all my research, it is so comforting to have finally made a decision. Good luck to all those going through the research process now. Sometimes I think it is probably more anxiety producing that the actual operation :).
HOW can the invasive open heart be better than TAVR?
I'm glad you asked, "HOW can the invasive open heart be better than TAVR," because I'm certain it's a question on many Connect members' minds.
Although transcatheter aortic-valve replacement (TAVR) may seem like an obvious choice, to avoid the stress of an open heart procedure, not everyone is a candidate for it. Doctors are still figuring out how the valves last over time, and there is no data showing how patients fare if they have TAVR and then need to undergo it again because the valve fails. I encourage you to read this article in one of the heart journals, "TAVR: Miracle for Some, but No Improvements in Quality of Life for Others," https://www.tctmd.com/news/tavr-miracle-some-no-improvements-quality-life-others
There are studies that have shown that the durability of the procedure may not be very good. TAVR valves, made from cow or pig tissue, last five to seven years, whereas in open heart surgery, the valves are either made of tissue – last around 10 years – or metal, which lasts 20 to 25 years. https://www.nejm.org/doi/full/10.1056/NEJMoa1700456
According to the American College of Cardiology (ACC), in both TAVR and open-heart surgery, about 25 percent of high-risk patients died within one year, but a point to note is that about 5 percent of TAVR patients had a stroke within a year of the procedure, The same study indicates that up to 25 percent of TAVR patients needed a pacemaker implanted after the procedure. https://www.acc.org/about-acc/press-releases/2016/04/02/10/12/rates-of-death-and-stroke-equivalent-for-surgery-and-tavr-at-two-years
Since it's a relatively new technology, and continually evolving, the procedure is "reserved" for patients for whom an open heart procedure poses intermediate risk. Therefore, most people who have this procedure are in their 70s or 80 and often have other medical conditions that make them a better candidate for this type of surgery. https://www.heart.org/en/health-topics/heart-valve-problems-and-disease/understanding-your-heart-valve-treatment-options/what-is-tavr
As tempting as it sounds to replace aortic valve surgery with a TAVR procedure, there needs to be evidence that is beneficial, not only in the short-term, but also the long-term in patients with aortic valve disease.
I hope this helps answer some of your concerns, @yorlik. Would you be able to share some more details about your diagnosis and upcoming surgery?
Liked by Teresa, Volunteer Mentor
You summarize most of the facts well, thank you. Your info matches my studies.
BUT I believe you, like my cardiologist, heart surgeon, his PA, nurses in the heart center, almost everyone who lists pros and cons, missed perhaps the most important difference I discovered! I will assume this major omission is due to these experts knowing their stuff so well they do not realize us little people don't and maybe assume we realize it. So instead they say our congressmen won't allow it if we are healthy (none said it is the FDA that limits its use today)…
ALL comparisons of TAVR vs. OHS should list THIS major difference: by design, TAVR CANNOT INSTALL THE SAME SIZE VALVE REPLACEMENT! The TAVR replacement must be attached (no clue how yet) to the present valve so will be SMALLER opening than the original!
One should ask, WHY does the aortic valve need replacement? Because it does not open as large as it used to – the reason is unimportant for this discussion! The FACT is the opening is no longer as big, thus there is a PRESSURE build up across it even when open! There should be 0 pressure if opened fully! THAT is the original design. So TAVR is a smaller than original opening and PRESSURE REMAINS! The object will be for LESS pressure than before the procedure, but likely pressure none the less!
In my book that is a HALF FIX.
Thus I kept my 9/10/2018 date with the surgeon for OHS service.
I was diagnosed with hypermobility and sent for an echo to check for vascular EDS. It came back clean but they said it looked like I have a narrow aortic valve and possible AS. They are sending me for a chest CT. What are the chances that it was just a bad reading? How likely is it that the echo was right? My doctor told me not to worry so I’m just wondering how common it is that echos are innacurate.
I sincerely apologize for the delayed response – somehow I just saw your message.
You may also notice that I moved your post to this existing discussion as I thought it would be beneficial for you to be introduced to a few other members discussing aortic stenosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences. I'm hoping @hopeful33250 @mimi68 @ronbee @kibwezi @nanadoris and others can share their insights about accuracy of echo readings too.
May I ask if you would be able to share a few details about the chest CT scan – only if you wish, of course?
smueller, I think for an echo test to be significantly inaccurate would be very rare. The operator reads pressures and sizes of things during the testing and with just a little experience I bet they can tell in the first 5 minutes of the test whether there is an issue or not. From looking at mine, it seems pretty obvious what is happening – not at all like me trying to see a hairline crack in a bone – I have never been able to see that. So I think you owe yourself at this point total believe the echo is telling the proper story. In my case I had an echo 3 years in a row; each one showed less flow and more pressure and smaller opening than the previous year's echo. Last one made me see a cardiologist who did a heart cathader test which proved it was something that needed fixed now. Surgeon 2 weeks later said he never used his largest valve (29mm) until me. Old bicuspid was 28mm and the calcification reduced that opening he said to the size of a straw. 77 something pressure – heard in hall before coming in to see me the first time say 'holy shite and he is walking around?" no clue but I went thru with it 1.5 weeks ago. I won membership in the supposed 40% subgroup of valve replacement customers who end up with A-fib afterwards… I am hoping I will be one who sees the A-fib stop in a few more weeks… Hang in there. Lots of us have gone thru this and will survive. Curious: is yours a bi or tricuspid valve? Do you know the difference yet?
Congential heart defect( bicuspid aotic valve) I was born with and never knew I had, also a heart murmer. I never had any problems as a child. I swam competitively until my late teens. Fast forward to today, Male 52 years old fairly good health. In 2016 I was diagnosed with bicuspid aortic valve stenosis after experience loss of energy, fatigue, chest tightness, shortness of breath, sometimes doing minimally everyday tasks.
I' ve had two echos, heart cath, two treadmill stress tests. Since the first tests, until the most recent testsJanuary 2019 my stenosis is showing worsening. My cardio has suggested I need to have valve replacement surgery in
Welcome to Connect @tjmcdon. You may notice that I moved your message and combined it with this existing discussion on "Aortic Stenosis & Valve Replacement" as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
Here’s some more information from Mayo Clinic about aortic valve stenosis https://www.mayoclinic.org/diseases-conditions/aortic-stenosis/symptoms-causes/syc-20353139
I’d also encourage you to view this video on Connect where Dr. Joseph Dearani, Chair, Cardiovascular Surgery, and Dr. Juan Crestanello, cardiovascular surgeon, talk about heart valve disease and surgical options: https://connect.mayoclinic.org/webinar/video-qa-about-heart-valve-disease-and-surgical-options/
Besides members in this group, I’d like to introduce you to a few others whose insights might be helpful to you; please meet @degarden_girl @yoanne @twocents @lynnw @camaroyo @yorlik
@tjmcdon, are there any aspects about heart valve surgery that you have questions about?
My original post got cut off some how. Here it is….
I have congential heart defect( bicuspid aotic valve stenosis) evidently I was born with this
( bicuspid aortic valve) and never knew, also have a heart murmer. I never had any problems as a child. I swam competitively until my late teens. Fast forward to today, I'm a male 52 years old in fairly good health, some cholesterol
issues, but under control with a statin drug. In 2016/2017 I was diagnosed with bicuspid aortic valve stenosis, after experiencing loss of energy, fatigue, chest tightness, some light headedness/ dizziness and shortness of breath, sometimes just doing minimally everyday tasks.
I've had two echos, heart cath, two treadmill stress tests.
Since the first tests, until the most recent tests in January 2019, my stenosis is showing more narrowing. My cardio has suggested I need to have valve replacement surgery( mechanical valve) in the next 3-6 months and has recommended a surgeon along with more testing. Im overwhelmed at the thought of facing open heart surgery… what is my life expectancy without having the surgery? 3-5 years? I have alot to digest right now. What question should I be asking? Very overwhelmed.
@tjmcdon Welcome to our caring group .I'm Lioness and in 1996 I had open heart ,Triple by pass it you have faith in your Cardiologist don't be afraid they do a good job. My friend had a valve replacement with the pig valve no problems I hope this reasures some .
@lioness, thank you, I really need the support right now at making the hardiest decision(s) of my life.
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