37 yr old with BAV and Severe AR

[sam]

Hello everyone,

I have been reading posts on this forum on and off for past several years. I want to thank you all for sharing your stories and learnings generously!

I was diagnosed with mild Aortic regurgitation with most likely a bicuspid valve as a 17yr old after the physician heard a murmur during a routine medical. Over the years AR became moderate and this year my cardiologist feels that it crossed over to severe territory. This has been accompanied with increased angina, palpitations and occasional bouts of breathlessness in the last 6 months. He feels it is time for a surgical intervention, and he conducted an angiogram to confirm that AR is indeed severe. I will be seeing a surgeon soon.

I have a borderline aortic root dilatation too.

I'm currently in Bellevue, Washington but considering traveling to Cleveland Clinic for a second opinion on repair vs replacement for my specific case. Would be great to hear from people who underwent AVr (aortic valve repair) or travelled to Cleveland Clinic for OHS.

Thanks for reading!

Cheers!

 

[christopherj]

Hi, Sam. Welcome to the forums. I don’t have the specific experience you’re asking for, but I did use Cleveland clinics virtual second opinion service. Which does not require travel. A nurse will guide you through getting all your records and imaging transferred to Cleveland for the review. Here’s a link to save you a search. If you do decide to travel from Washington to Ohio (via I-94 if you’re driving) be sure to wave at Mayo Clinic and Northwestern Memorial on your way by. Both world class heart hospitals.

 

[pellicle]

Hi Sam and welcome

I see already you're finding help from the good people here. Its a great place for finding the bit of the jigsaw puzzle you're missing

Best Wishes

 

[Chuck C]

Hi Sam and welcome to the forum.

Sorry to hear that you need surgery soon, but glad that you found us. Already I see that someone has given you some great info about seeking a second opinion.

I'm currently in Bellevue, Washington but considering traveling to Cleveland Clinic for a second opinion on repair vs replacement for my specific case.

I think that getting second opinions is a great idea and usually recommend that people do so. Just make sure you balance the value of getting a second opinion with timing, because you indicated:

increased angina, palpitations and occasional bouts of breathlessness in the last 6 months. He feels it is time for a surgical intervention,

So, you are severe with symptoms. It's time for surgery and not delay. If you are able to get a second opinion from Cleveland Clinic within weeks, then it is probably a good idea. But, if they want you to wait months for said opinion, I would really think hard about waiting that long. Hopefully @christopherj can share how quickly he was able to get his second opinion. And, if CC happens to have a significant wait period, please know that there are many top notch clinics around the country and I'm certain that you should be able to find one that can give you a prompt 2nd opinion.

 

[3mm]

I had a virtual 2nd opinion from Mayo last August. Their standard is to have the 2nd opinion within 2 weeks. They took care of getting all of my records; I just had to ensure the various doctors and hospitals had my permission to share the records. Note: Mayo also had an opening just 2 weeks after I got their opinion, so I actually had Mayo for my surgery.

 

[christopherj]

I had a similar experience to @3mm. Fortunately all my medical records were in mychart and very easy to transfer.

 

[sam]

Hi @christopherj , @3mm,
Did your insurance cover the second opinion?

I called my insurance's customer service and they had said they would cover it. But it is my understanding that the provider should apply for a pre-approval with the insurance. I wonder if Cleveland Clinic and Mayo Clinic do this for second opinion.

Thanks!

 

[dick0236]

Hi Sam and welcome. You and I have traveled similar paths. I was diagnosed in my early teens (maybe before) and had my surgery in my 30's. I know what it feels like to get a "gut punch" like a need for OHS. Fortunately, it is only a "bump in the road" and you will come thru it and go on to live a normal long life. This Forum is here to answer any questions you have along the way. After 56 years post-surgery I continue to learn from the folks on this Forum.

 

[Croooser]

Sam,

I traveled from Central Florida to CC - Cleveland 3 years ago for my AV and AA surgery. I was able to send them digital copies of my recent echo and CT scan. Details are in this thread - starting at post #21.

https://www.valvereplacement.org/threads/cleveland-clinic-questions.888038/page-2#post-907062

Feel free to ask any follow up questions.

HTH

 

[Nicky77]

Patient, 37 years old, diagnosed with Bicuspid Aortic Valve (BAV) and Severe Aortic Regurgitation (AR). Considering potential risks associated with both conditions, close monitoring and timely interventions are crucial for managing cardiovascular health. Collaborative efforts between the patient, cardiologist, and healthcare team are essential to develop a personalized treatment plan aimed at optimizing outcomes and enhancing quality of life.

 

[sam]

Thanks everyone who took time to reply, I appreciate your input. The surgeon at UW Heart Institute feels the valve is repairable. He recommends doing the David's procedure to fix the root dilation as well.
1. I'm worried about getting operated by a resident. I saw in an STS webinar that most cardiothoracic residency programs at high volume centers are looking to give their senior residents an opportunity to do a full David's procedure. Can it happen that I get passed onto a resident?
2. There are higher volume centers for David's procedure with more experienced surgeons near or on east coast. What are the risks of flying after surgery? What is a good period after surgery one can travel with low risk of infecting the incision?

 

[dick0236]

1. I'm worried about getting operated by a resident. I saw in an STS webinar that most cardiothoracic residency programs at high volume centers are looking to give their senior residents an opportunity to do a full David's procedure. Can it happen that I get passed onto a resident?

I have no idea what a "David procedure" involves but my surgeon was also a "resident" who was overseen by an experience surgeon altho few surgeons had much experience with OHS in 1967.
He was a couple years older than me (I was 31) and he went on to become a Chief of Staff at the Texas Heart Institute. BTW, I still have the valve he placed in me.....57+ years ago.

Good luck with your procedure .

 

[Survived03]

Sam, initially I had a concern with a resident/fellow driving the surgery. That's the price you pay for using a high volume teaching and learning facility. But by no means are they unsupervised and the entire team is "at the ready" to address any unforeseen complications. As it turns out, my surgery in May 2023 was performed by a previous fellow who was in attendance for my first surgery 20 years earlier. Yes, during the second surgery the current resident/fellow probably did most of the heavy lifting but they literally were graduating to full attendee after my surgery. So just a couple days later. Serendipitously, the lead anesthesiologist that worked on me during my first surgery was the lead for my second. That OR was full of people very familiar with my case. They were all fantastic. Try not to worry about the resident/fellow, it happens every single day.

 

[Lucker]

David's procedure requires more experience, comparing to Bentall's. I'd look at the most experienced surgeon I could find.