Aortic Stenosis & Valve Replacement

Posted by onthego3 @onthego3, Dec 14, 2016

Anyone have this non operable problem according to doctors and tests.its called aortic stenosis

@divmercy

In addition, I had yearly 2d echo with Doppler tests done almost every year since 2007. Each time the opening of my aortic valve is reduced.LAst October 2016, the measurement is already 36 cm2.

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@predictable Thank you for your words of encouragement

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@divmercy

In addition, I had yearly 2d echo with Doppler tests done almost every year since 2007. Each time the opening of my aortic valve is reduced.LAst October 2016, the measurement is already 36 cm2.

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My stenosis. Is at a 5.5 hsaving trouble asking for 2 nd opinion, as to where do I turn?my primary?I get another echo in feb. then will need to make a decision, so what to do what to do?

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@divmercy

In addition, I had yearly 2d echo with Doppler tests done almost every year since 2007. Each time the opening of my aortic valve is reduced.LAst October 2016, the measurement is already 36 cm2.

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Hi Carlyne, welcome to Connect. You can ask your primary care doctor for a referral for a second opinion. But you can also call the hospital of your preference to ask for a consult with a cardiologist. I’m tagging @cynaburst on this discussion. I think she will tell you to do your research. Find a specialist with a good reputation.

If you wish to seek a second opinion at one of Mayo Clinic’s 3 campuses, call the phone number on this page http://mayocl.in/1mtmR63. You can self refer and do not need a doctor’s referral.

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@divmercy

In addition, I had yearly 2d echo with Doppler tests done almost every year since 2007. Each time the opening of my aortic valve is reduced.LAst October 2016, the measurement is already 36 cm2.

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You should definitely find a surgeon that has done many valve replacements, whether by the less invasive procedure or via open heart surgery. One website you may want to visit to talk to others who have been through similar is valvereplacement.com. I used their message boards alot when preparing for open heart surgery myself. Can you ask your primary doctor for a referral to a good local cardiologist? Otherwise a local university teaching hospital is a good place to start.

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Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Hi @tavrm, welcome to Connect.
I moved your message to this existing discussion of the same name. I encourage you to read through the past messages to learn more from others. In this discussion you’ll meet mentors, @cynaburst @hopeful33250 and @predictable as well as other members who can provide insight.

You might also wish to read this discussion about TARV where you’ll meet @cb91764 and @ch246cf10
– My heart Dr talking about doing a TARV stent http://mayocl.in/2j1NjqV

You can read more here about Mayo Clinic’s approach to transcatheter aortic valve replacement http://mayocl.in/2j1GhSY and animation explaining the procedure http://www.mayoclinic.org/vid-20303159

I understand the urgency, but commend you on doing your research to find the best care that’s right for you. Have you called Mayo Clinic, Jacksonville and spoken to anyone yet?

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@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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I’m also tagging @sauvee and @pbo2016 so they can share their experiences of Mayo Clinic, Florida with you.

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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.

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@cynaburst

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.

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I am 62 years old, BUT also a 40 year survivor of terminally staged cancer, in which I was on a clinical trial and study for 3 years, from age 22 to 25. My ENTIRE a body was radiated from head-to-toe, 5 days per week, over a period of nearly one year. I've been in menopause for 40 years, with NO estrogen in my body. I have SEVERE osteoporosis. I also have no spleen. I would NEVER be able to have my fragile chest cavity sawed open. "Open Surgery," as you call it is NOT AN OPTION FOR ME. I would NEVER agree to that. The Dr who I'm considering for my TAVR procedure is the director of the TAVR Program, and has performed hundreds to thousands of TAVR procedures, AND has a prolific record of published medical articles. He is at the Nation's #1 hospital for cardiology AND TAVR. I bet you can guess the name and location of that hospital.

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@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Thank you, Colleen. I did call Mayo Clinic, Jacksonville, FL… AGAIN today. This is the 3rd time calling them to try to get answers to my questions. I spent SIX HOURS on the phone today with Mayo Clinic, Jacksonville, FL; and have never been so frustrated and disappointed in my life. I was constantly connected to the APPOINTMENT-MAKING line, which I said countless times I did not want. I WANT TO GET SOME QUESTIONS ANSWERED BY THE TAVR DEPT BEFORE I MAKE EVEN ONE APPT. I am livid at the run-around I got — how I could NOT be connected to the TAVR Dept., not even a secretary. Ohhh, and please do NOT mention "BRAD," the person "hired to answer TAVR questions." I tried that in December 2016, got voice mail, and he NEVER CALLED ME BACK. I tried again after holidays, got voice mail, and he NEVER called back. I tried yesterday. NO call back. I tried TODAY, 1/24/2017, THREE TIMES. Voice mail. I left THREE PRIORITY/PRIVATE VOICE MAILS TODAY FOR "Brad." At 4:00 pm today, I learned that Brad isn't in today, AND I WAS FINALLY CONNECTED TO A CARDIOLOGY DEPT. SECRETARY who could not answer one of my questions. Upon speaking to her supervisor, at 4:30 pm today, her supervisor said, "All of your questions will be answered at your first appointment." For the hundredth time today, I explained to this supervisor that I am NOT making an appt. at Mayo Clinic, Jacksonville,  FL, a 7-hour drive from my home, UNTIL I GET SOME ANSWERS TO MY QUESTIONS. The "supervisor woman" then HUNG UP ON ME! (Sorry for the all-caps,  but I am so frustrated, so angry, that I'm surprised my aortic valve hasn't exploded today.)

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@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Colleen? Any comments or replies about my post here? 

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@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Hi @tavrm,
Indeed. I’m afraid that my response did not go through yesterday.
Your frustration is understandable and I’m sorry you felt your requests for information were handled this way. The Florida cardiology department has likely contacted you directly by now, as your message was forwarded to them.
Did you get answers to your questions?
Colleen

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