The journey to my valve replacement.

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dani's nana

Active member
Joined
Jan 25, 2016
Messages
36
Location
Crooks, SD 57020
I have been seeing doctors since 2010. When I was diagnosed with mild-moderate aortic stenosis. I didn't care for my first doctor and found another doctor to see. I have been seeing Dr Josson was who I started seeing in March of 2013 and with him I was very comfortable and felt like I was in good hands. Dr. Josson diagnosed me with a bicuspid valve Until this year. My results from my echo came back and he said I would start having to be seen every 6 months.

I sent my results to my friend who does echos as her job. She told me I really needed to get a second opinion as my pressure gradient was 65 graded as severe and my valve area was .7cm2 the start of the severe range. I found my second opinion doctor to be very understanding and wanting to get to the root of my problems. I met with another doctor that same day and had a chest ct scan. It was found that I also had another heart defect called coarctaion. Dr Fausch, my new cardiologist than wanted me to meet with a surgeon, who didn't feel it was the right time for a valve replacement and set up a lung function test to see what the cause of my shortness of breath. I had a lung function test that I passed with flying colors. Dr Fausch and Dr Bacharach both said I needed to see measurements after getting a angiogram and avious to see how severe the coarctation was.

Yesterday was the angio. The results were that the coarctation was not as severe as they perceived it to be from the cat scan. The arteries were all clean and void of any fatty deposits. But the valve needed to be replaced soon. The only question was did the ascending aorta need to be grafted too. I didn't feel the the first surgeon on the same page so with the help of my sister in law, who has been a charge nurse for 35 years, and worked with many of the doctors from North Central Heart when they were located at the same hospital she was associated with. She called the nurse (a friend of hers that is the nurse for the surgeon, Sarah wanted me to see in the first place.) I am going to see him on Wednesday to schedule my valve replacement. I am thinking about the second week of March.

My lifeline (my sister in law) is on vacation to Florida until the 6 of March and I won't go into any hospital without her there.

I will keep you updated after my visit with my surgeon on Wednesday.
 
Thank you for the update. Your story illustrates the need to self-advocate your medical care. Others here have pointed out that different doctors/techs can report different measurements after reading test results, which is confusing and worrisome to the patient. I'm glad you sought different opinions. Keep us posted.
 
How old are you and what is the size of your aortic aneurysm at the fattest spot ? Personally, if you have an aortic aneurysm and even if the aortic aneurysm is not critical, I would repair it. There is a higher chance, because you have a BAV that your AA will grow over time and you might need another OHS. I am not a doctor but this is the decision I would take if I was to have the valve replaced and also had an Aortic aneurysm. Many people that underwent valve replacement at first ( at a young age) had to do another surgery to fix an aortic aneurysm. You can read a lot of those cases on the forum.

As for your valve replacement, good luck for your decision you seem to be taking your time and making sure you get the right information.
 
Do you have a history on your AA growth over the last decade ?

If I was 30 years old with a 4.1, I would ask my surgeon to repair for sure, I would never take a chance with that.

Good luck in your researchs.
 
Hi , my aorta was 4.1 cm at the time of my surgery and I was told it would be replaced.
I only saw the surgeon once the week before op, the surgeon told me the sutures and scar tissue created would hold it , I guess he thought the chance of it increasing was less than the risks/complications involved in replacing it. I think NZ guidelines are 5.5cms for surgery.
I've since found surgical guidelines in some countries are that if they are in there to replace the valve and the aorta is 4cm and above then it should be replaced at the time.
At 39 I wonder now if I've been set up for a future reop , time will tell .

By the way my children's scans were all negative for bicuspid valves.
 
My surgeon also told me that the scar tissue strengthen the Aorta wall, however that does not mean that it will always stop an Aneurysm from growing, we have example of people. I guess it does depend on every person. Maybe at 60 years with an AA of 4.1, a repair would not be necessary because over 20 years the scar tissue might hold. It is a question worth asking to the surgeon !

Good stuff for your kids Warrick, I am going to bring mines for a check too.
 
I interviewed (3) surgeons before I decided on Dr. Barnhart here at Swedish in the Seattle area. They also didn't detect that I had a bicuspid valve until they opened up. Something about the way my heart was positioned. You are your own best advocate. Talk to several Drs. until you find the surgeon that you feel is best for you. I did hundreds and hundreds of hours of research before my OHS. Good luck with your research and your decisions.
 
My daughter was diagnosed with a bicuspid valve 2/19/16. She is seeing the cardiologist this morning. I love so many things I have passed on to my daughter but this is not one. She is 19 but knows now. I found out about my biscupid valve about 3 years ago at 56
 
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