First post from Maryland - advice and support needed!

[MarkZ]

Hi everybody, I’ve been lurking all week. Been following my BAV for ten years and my time for surgery has come. I’m showing high gradients across my AV and my ascending aorta is 5.1 cm. I met with a surgeon at Johns Hopkins and he recommended a Bentall.

Full disclosure - I’m on the faculty at Johns Hopkins Medicine and direct a diagnostic service (cancer). While I have the utmost faith in JHU and am very proud of what we offer in the arena of cancer diagnostics, the surgeon gave me wonderful advice to get the best surgical team I can find for such a complex procedure. I’ve reached out to Penn Medicine and Cleveland Clinic for evaluation. I have family in both locations so I know there will be support for my wife and 1 year old son regardless of my decision.

I don’t know if I have a specific question for you all yet, but wanted to introduce myself and my situation and would welcome any advice any of you might have. I’ve learned it’s frankly much easier being on the other side of a medical condition and I hope I emerge from this experience with an even better and more empathetic approach to patient care.

 

[Zoltania]

Welcome! You've found a good place.

If you haven't found them yet, there are some very useful sticky threads on what questions to ask your doctor, what to take to the hospital, and what things have surprised people about their surgeries.

For my part, I also found it helpful to go back through the post-surgery forum archives and read as many people's surgery stories as I could find.

Come back as soon as you think of some questions... there are plenty of people here who will be happy to help.

 

[gpr100rs]

Hi everybody, I’ve been lurking all week. Been following my BAV for ten years and my time for surgery has come. I’m showing high gradients across my AV and my ascending aorta is 5.1 cm. I met with a surgeon at Johns Hopkins and he recommended a Bentall.

Full disclosure - I’m on the faculty at Johns Hopkins Medicine and direct a diagnostic service (cancer). While I have the utmost faith in JHU and am very proud of what we offer in the arena of cancer diagnostics, the surgeon gave me wonderful advice to get the best surgical team I can find for such a complex procedure. I’ve reached out to Penn Medicine and Cleveland Clinic for evaluation. I have family in both locations so I know there will be support for my wife and 1 year old son regardless of my decision.

I don’t know if I have a specific question for you all yet, but wanted to introduce myself and my situation and would welcome any advice any of you might have. I’ve learned it’s frankly much easier being on the other side of a medical condition and I hope I emerge from this experience with an even better and more empathetic approach to patient care.

I saw a Univ of Mich cardiologist for over 20 years to watch my BAV and aortic aneurysm and when it came time for surgery, I met with two of their cardiothoracic surgeons but was not impressed. So I sought out Cleveland Clinic. You'll hear nothing but praise for them on this forum. I wanted Eric Roselli, but he is booking beyond June and he said he didn't want me waiting that long given my gradients (129 peak and 82 mean) and small valve area (.6). He recommended a young surgeon, Aaron Weiss. While I wanted someone with a little grey hair, Dr. Weiss has got a great backgound and was invited to CC by the legend, Dr. Lars Svenson. I was also told Dr. Roselli will be in the OR for part of the procedure. My surgery is scheduled for 4-12 and will involve replacing the valve (I am 63 and will likely go with the Edwards Resilia), ascending aorta graft (4.6 mm, thankfully the root is fine) and, to make things really interesting, a CABG (LAD is 60-70% blocked). These surgeries extend far beyond the surgeon; they involve the entire OR team and after-care. CC is certainly one of the best in the world, not only because they have world-class surgeons, the entire team/facility is top shelf. CC is also very good at getting their message out - search Roselli, Sevenson, et al on YouTube and you'll get the full tour.
Lastly, this is a great forum. Generally very knowledgeable people who have been through nearly exactly what you are about to experience. Just express a concern (e.g. valve choice, blood thinners, pre/post surgery issues, etc.) and there'll be many who can offer good advice. All the best to you brother.

 

[dick0236]

I don’t know if I have a specific question for you all yet,

Welcome MarkZ. Try using the "search" function. You will find some discussion on nearly every heart condition and treatment known. This forum is over 20 years old and is made up of patients with heart problems......pre and post-op. Many, many, many years of experience here.......from around the world......literally.

 

[pellicle]

Welcome and I hope it goes entirely routinely. John Hopkins is a pretty famous place so you should get excellent care.

Best Wishes

 

[Chuck C]

Hi everybody, I’ve been lurking all week. Been following my BAV for ten years and my time for surgery has come. I’m showing high gradients across my AV and my ascending aorta is 5.1 cm. I met with a surgeon at Johns Hopkins and he recommended a Bentall.

Full disclosure - I’m on the faculty at Johns Hopkins Medicine and direct a diagnostic service (cancer). While I have the utmost faith in JHU and am very proud of what we offer in the arena of cancer diagnostics, the surgeon gave me wonderful advice to get the best surgical team I can find for such a complex procedure. I’ve reached out to Penn Medicine and Cleveland Clinic for evaluation. I have family in both locations so I know there will be support for my wife and 1 year old son regardless of my decision.

I don’t know if I have a specific question for you all yet, but wanted to introduce myself and my situation and would welcome any advice any of you might have. I’ve learned it’s frankly much easier being on the other side of a medical condition and I hope I emerge from this experience with an even better and more empathetic approach to patient care.

Hi Mark.
Welcome. I had a Bentall Procedure completed 12 days ago at UCLA by Dr. Richard Shemin. I was thoroughly impressed with Dr. Shemin from consultation, all the way through the post surgery follow up visits.
I was determined to see one of the best for my AVR and also consulted with Dr. Alfredo Trento, the top valve surgeon at Cedar Sinai. Although his record speaks for itself, I was not impressed with Dr. Trento in our consultation and left with many questions and not the warm fuzzies, if you will.
Dr. Shemin has equally impressive numbers, both in terms of the number of valve operations which he has completed, the complexity of operations he has completed and his remarkable survival rate.
During our consultation I was completely impressed with Dr. Shemin. The consultation did not end until he made sure that he answered every question that I had. I left with a very good feeling and knowing that he was the man whom I wanted to complete my operation.
One other thing to consider is how urgent your procedure is. Cleveland Clinic is ranked #1, but their top surgeons are often booked out for months. Dr. Shemin keeps very busy, operating virtually every day, but he was only booked about 2 weeks out, so there was no delay. This can be very important, because once a person gets to the point of needing surgery, you often take a big risk in waiting months vs weeks.
Dr. Shemin specializes in the mini-sternotomy, which he used for me, even though my procedure was a Bentall. I seriously can't understand how he is able to complete such a complex operation through such a small opening, but he does it. My recovery has been rapid, in part because I only had a 3.5 opening in my sternum vs a full sternotomy.
Please let me know any questions that you may have.

 

[Seaton]

Hello Mark and welcome.
Yes, this forum’s a fabulous resource for anyone experiencing heart valve issues – diverse wisdom and experience in abundance and always a generous willingness to engage with questions where possible. You’ve come to the right place!

Finding the forum certainly made my journey pre and post replacement a lot smoother and calmer.

Will be good to read your words whenever you choose to visit. Until then, good health and very best to you.

 

[caro]

Hi Mark,

I’m from Baltimore. Now live in NY. Have cardiologist in Baltimore and one in NY. Had my surgery at Cleveland Clinic last year. Surgeons are terrific obviously but what also sets CC apart from other hospitals is the care you receive before and after surgery. There was a phlebotomist there who I saw regularly who could draw blood from a shoe. My veins are super hard to find so I was in complete awe of her. Usually when I get blood drawn at a Quest or in a hospital, I leave with 3-6 *** marks in each arm and I feel bad because they feel bad that they can’t find my veins. Everyone doing diagnostic tests before surgery was top notch and so nice. They had me meet with a very helpful cardiologist there a day before surgery. I asked her, “if you were me, which valve would you get?” She was honest and had great information for me. I LOVED the cardiac nurses. It was a very nurturing environment and super organized. Rarely had to ask for something twice or ask a question twice. They offered Reiki which was amazing. Everyone there is dedicated to treating people with very similar procedures. I was confident I was with the right team. I could go on and on. Happy to answer any questions.

 

[MarkZ]

All --
Thanks for your replies! I'm really looking forward to continuing to read this site. I love the post op "surprises" thread, I went through every post on every page. Reassuring, scary, funny, and informative all wrapped in one.

 

[kevanndo]

Hi, Mark,
I'm from Maryland as well, and my now 16 year old daughter had her second and third OHS at Johns Hopkins (mitral valve repair in 2011 and mitral valve replacement in 2014). You might know her surgeon who has since left Hopkins. I know pediatric cardiac surgery is separate from adult, but I'd be more than happy to share about our experience there. My daughter still sees a cardiologist at Hopkins. You mentioned that you love the post op "surprises" thread. Well, I could fill a book with unexpected "surprises"!

 

[CatDad82]

Welcome! Good luck with the procedure. I can vouch for JHU. I had my valve and arch replaced there in July 2019. Dr. Chun Choi performed my procedure. Let us know how it goes.

 

[TheGymGuy]

Hi Mark. I'm also from MD. Had my procedure at Suburban by NIH heart team. Benefits of a smaller facility were better patient care IMO. I did evaluate JH in Baltimore but felt like I would just be another number there.

Reach out if you want to chat with another local person.

 

[MarkZ]

Thanks so much everybody for your advice and offers so far.

I met a couple weeks ago with Joseph Bavaria at UPenn. He comes highly recommended by some physicians I know from UPenn, leads the aorta center at Penn, former president of STS, etc. He recommended a Bentall with hemiarch replacement. When I asked him how much additional risk came with replacement of the root and hemiarch, he said “In my hands? Zero.”

However, he said a couple concerning things. 1) he said any risk I have is due to wall thickening — but my CT reports say it’s only moderate so not sure why the disparity. 2) he said reoperation down the road is likely. He said about 30-50%. This is much higher than I’ve seen elsewhere. He didn’t indicate why the rate would be so high for me, and seemed to imply that’s the number for his patients generally. Does this sound right?

Anyway, I actually ended up making an appointment with Lars Svensson and a scheduled surgical date of May 21 instead! I appreciated meeting a legend like Dr Bavaria but everyone except one person I’ve spoken to in the medical community has recommended Cleveland Clinic as the best option. And since my wife has family there it also makes a lot of sense (we have family in Philly too however). I meet with Dr Svensson on the 5th and 6th for presurgical consult.

 

[Chuck C]

2) he said reoperation down the road is likely. He said about 30-50%. This is much higher than I’ve seen elsewhere. He didn’t indicate why the rate would be so high for me, and seemed to imply that’s the number for his patients generally. Does this sound right?

Hi Mark,
It sounds like you are consulting with the best and have made a great choice in the Cleveland Clinic and Lars Svensson.
To answer your question about whether 30-50% chance that you will need a reoperation down the road sounds accurate we would need to know 1) type of valve you are going with 2) your age.

Here's why those are important. If you are getting a mechanical valve it will likely outlive you and since you are getting a Bentall, you should not need aneurism repair down the road, so I would say 30-50% is high, unless you are very young as a lot can happen over 40-60 years.

If you are getting a tissue valve, then the % chance of needing a reoperation down the road is totally age dependent. If you are less than 60, it is nearly 100% probability that you will need a reop down the road. If you are 85+ years old, then it is probably less than 10% chance of reop, as your tissue valve should outlive you.

 

[MarkZ]

Hi Mark,
It sounds like you are consulting with the best and have made a great choice in the Cleveland Clinic and Lars Svensson.
To answer your question about whether 30-50% chance that you will need a reoperation down the road sounds accurate we would need to know 1) type of valve you are going with 2) your age.

Here's why those are important. If you are getting a mechanical valve it will likely outlive you and since you are getting a Bentall, you should not need aneurism repair down the road, so I would say 30-50% is high, unless you are very young as a lot can happen over 40-60 years.

If you are getting a tissue valve, then the % chance of needing a reoperation down the road is totally age dependent. If you are less than 60, it is nearly 100% probability that you will need a reop down the road. If you are 85+ years old, then it is probably less than 10% chance of reop, as your tissue valve should outlive you.

Chuck -- I'm 43 and getting a mechanical valve. That's why I was surprised.

The other question I have is about circulatory arrest. He indicated they use cooling + circ arrest for hemiarch replacement, but I thought that led to worse outcomes usually. Although I watched a video by Roselli saying it doesn't mean worse outcomes in a study where they matched patients across groups. Anyway, it will be interesting to hear what Dr. Svensson suggests regarding hemiarch and circ arrest. I haven't spoken with him yet, only his NP.

 

[pellicle]

Here's why those are important. If you are getting a mechanical valve it will likely outlive you and since you are getting a Bentall, you should not need aneurism repair down the road, so I would say 30-50% is high, unless you are very young as a lot can happen over 40-60 years.

Agreed

 

[Chuck C]

Chuck -- I'm 43 and getting a mechanical valve. That's why I was surprised.

I am surprised by his prediction of reoperation for a mechanical valve as well. Below I have linked a 30-year study on the St. Jude mechanical valve. These numbers appear much more optimistic than those presented by that surgeon that you consulted with.

"There was no incidence of structural valve deterioration observed in either group. In the AVR group, 30-year actuarial freedom from reoperation was 92% 2% and cumulative 30-year freedom from reoperation was 94% 1%. "

Thirty-year experience with a bileaflet mechanical valve prosthesis Scott Johnson, MD,a Marth

Link: DEFINE_ME.

 

[MarkZ]

Thanks, that clears things up. I thought it was a very confusing thing to have said and I think it impacted my wife because I had told her what I knew, that this surgery didn't represent a lifetime of being in and out of the OR. I can't imagine he'd have been that wrong, so I wonder if both my wife and I misinterpreted what he said.

 

[cldlhd]

Hi everybody, I’ve been lurking all week. Been following my BAV for ten years and my time for surgery has come. I’m showing high gradients across my AV and my ascending aorta is 5.1 cm. I met with a surgeon at Johns Hopkins and he recommended a Bentall.

Full disclosure - I’m on the faculty at Johns Hopkins Medicine and direct a diagnostic service (cancer). While I have the utmost faith in JHU and am very proud of what we offer in the arena of cancer diagnostics, the surgeon gave me wonderful advice to get the best surgical team I can find for such a complex procedure. I’ve reached out to Penn Medicine and Cleveland Clinic for evaluation. I have family in both locations so I know there will be support for my wife and 1 year old son regardless of my decision.

I don’t know if I have a specific question for you all yet, but wanted to introduce myself and my situation and would welcome any advice any of you might have. I’ve learned it’s frankly much easier being on the other side of a medical condition and I hope I emerge from this experience with an even better and more empathetic approach to patient care.

I had my aortic root, ascending and hemi arch replaced at Penn medicine by Dr Bavaria. I'm not an expert but any questions feel free

 

[cldlhd]

Thanks so much everybody for your advice and offers so far.

I met a couple weeks ago with Joseph Bavaria at UPenn. He comes highly recommended by some physicians I know from UPenn, leads the aorta center at Penn, former president of STS, etc. He recommended a Bentall with hemiarch replacement. When I asked him how much additional risk came with replacement of the root and hemiarch, he said “In my hands? Zero.”

However, he said a couple concerning things. 1) he said any risk I have is due to wall thickening — but my CT reports say it’s only moderate so not sure why the disparity. 2) he said reoperation down the road is likely. He said about 30-50%. This is much higher than I’ve seen elsewhere. He didn’t indicate why the rate would be so high for me, and seemed to imply that’s the number for his patients generally. Does this sound right?

Anyway, I actually ended up making an appointment with Lars Svensson and a scheduled surgical date of May 21 instead! I appreciated meeting a legend like Dr Bavaria but everyone except one person I’ve spoken to in the medical community has recommended Cleveland Clinic as the best option. And since my wife has family there it also makes a lot of sense (we have family in Philly too however). I meet with Dr Svensson on the 5th and 6th for presurgical consult.

Just read this after my first reply. I had my root replaced but kept my bav. Bavaria told me post surgery I was good for life and he'd never have to operate on me again. His lips to God's ears or however that saying goes but obviously there's no guarantee. I believe I had the David V.