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How long does it take to get an appointment in the Aorta Center at the Mayo Clinic? My son is due for his yearly check and an MRI of his bicuspid valve and dilated ascending aorta at the of August, and he will need a new provider near his new location, St Paul, MN. The Mayo Clinic seems like the...

All good news this weekend. My son has a better insurance company/policy now, and he now lives an hour and 15 min away from the Mayo Clinic. He’ll be switching to a new adult congenital specialist anyway, so Mayo Clinic it is. Hope they can schedule him in for his next follow up in August. MRI...

I remember you, pellicle! Thanks so much for your reply. My son gets here tomorrow for a visit. The first thing will be to see what he says about his insurance situation. The last I heard, the insurance company is fighting with the hospital to see who will cover the cost of his last echo. From...

This is very informative. Thank you so much! I wish you a successful surgery and a smooth recovery next month

I was so grateful to this forum 20 yrs ago when my 11 yr old son was diagnosed with a BAV and dilated asc aorta. Now my son is 31 yrs old (!!), and I’m back. It is nice to see the forums going strong and to recognize some familiar names who are now out of the ‘waiting room’ but still here...

Everyone is different, but I joined here 20 years ago when my son was newly diagnosed with a BAV at age 11. He’s 31 now and still has both his original aortic valve and ascending aorta. Surgery is closer but not imminent. I wish I’d had a crystal ball 20 years ago to see that for us this has...

Has anyone here been diagnosed with both?

Thanks, honeybunny!

Thanks, cldlhd and ****, Yes, it is definitely a question for his cardio. He is not due for his next appointment for a time, and has a brand new young pcp who just gave the hypertension diagnosis. In a way it is easier being the the parent/patient advocator now that he is older and in charge...

Just checking in to see other's experience with hypertension, along with their valve and aorta issues. My question is if hypertension commonly goes along with diagnoses like moderate aortic regurgitation, BAV and dilated asc aorta. My son was 11 yrs when he was diagnosed and I started on this...

Good luck, Brian. I hope you have good news that your measures continue to remain stable. Best wishes.

Update: We went to the appointment yesterday, and the new cardio does suspect that the increase in the Asc AO measure (.7 mm, rather than .6) could be due to the change in machine/tech. To be on the safe side they scheduled an appointment in 6 mons, as you guys thought would happen. Thanks...

I have been away from the forum for a long time, but your post caught my eye because my son was diagnosed at age 11 with BAV, Mod AV Regurgitation and a Mod Dilated Asc AO. We have been on the journey for 11 yrs, and son is 22 now. I decided in the beginning, and I'm really glad I did, that I...

This is very interesting, and true that we have indeed switched machines and technicians. He did have the old numbers confirmed by a cardiac MRI a few years ago. They tend to change slightly up and down, with a slight but steady upward trend, but they have never jumped up this much in one...

Thanks so much for the response. Yes, I forgot to mention that there is a BAV at the bottom of all this. The concern is the sudden advance of the dilation after 10 yrs of stability. I wonder if there is a resource online where there this is addressed, what type of follow up is needed for what...

I have been a member here since my son was 11, but have been offline for years because his situation has been, happily, stable. He is 22 now, and we have just come from the yearly echo, with an appointment in a week to see the new Adult Congenital Cardiologist. I wanted to check in here in the...

UPDATE with Test Results We were fortunate to have a smart doctor who wrote a letter to our insurance company, resulting in enough coverage for the testing (see original post) that we were able to swing it financially. I was very glad this worked out, because the testing proceeded and reports...

Thanks for the reply, Don. I wish you much success with your surgery and as smooth an experience as possible. From my years of reading about this I gather that the procedures have become pretty routine, and though not something you would choose to have, generally come out just fine. When my...

It has actually been three years since I've posted. I can't believe how fast the time has flown by! After this post I will visit around the forums to see how all are doing. Hope it has been a good three years for everyone. I am happy to report that my boy Matt, about to be 21 now (11 when...

My son has all three of these too, along with migraine. I've been out of the loop for a couple of years. Has there been a study about other conditions that go along with BAV? If not, there should be! I'll try to find one and check in if I succeed.