My number was finally called!

[bizinsider]

After years of sitting patiently in the waiting room, they called my number!

Flew to the Cleveland Clinic to meet with Drs. Griffin (the very kind and well-regarded cardiologist) and Svensson (the equally kind and by reputation exceedingly talented surgeon.)

I had a battery of tests: Echo, Stress Echo, Echocardiogram, Chest Xray and CT w/contrast. They showed a radical change in my valve: Stenosis, mild for years, went to severe; regurgitation to severe from moderate-severe. Plus, my mitral valve is now leaking.

Dr. Svensson suggested we get this done "soon," largely to avoid any damage to my left ventricle, which is slightly dilated, and any further issues with my mitral valve. If done soon, he believes the ventricle and mitral valve will repair myself.

The good news is that my heart muscle is considered in very good shape, which barring complications should result in a good outcome.

The bad news, if you can call it that: Because of the root, which will be a Bentall procedure with a composite root and bioprosthetic Edwards Perimount 2700 root/valve, I will have a full sternotomy.

Dr. Svensson said it could be done with a more minimal incision, but that the results tend to be better for this type of procedure with a full viewing area. As a bonus, it helps make sure the calcium from my valve doesn't go where it isn't supposed to be. As it relates to the wayward calcium, Dr. Svensson looked at me in the eyes and said, "I'm meticulous." At which point I thought, "Where do I sign up?" Surgery date: March 4.

I've been reading this forum and others for a very long time. I've researched ad-nauseam. The amount of info has been extremely helpful. Looking forward to joining the Z-club.

Cheers,
Herb

 

[user 16827]

Best wishes

 

[pellicle]

Hi

The good news is that my heart muscle is considered in very good shape, which barring complications should result in a good outcome.

The bad news, if you can call it that: Because of the root, which will be a Bentall procedure with a composite root and bioprosthetic Edwards Perimount 2700 root/valve, I will have a full sternotomy.

well as I see it the good news is great and if thats the extent of the bad news then that's good news too, as the extent of the significance of mini vs regular is trivial in the longer term view.

Now, have you read the stuff about kimchi?
;-)

Wishing you all the best for a smooth procedure and recovery

 

[bizinsider]

No Kimchi for me! And thanks!

 

[PAN]

Best of luck on the 4th

 

[Freebird]

As someone in the Waiting Room, your attitude is refreshing. Now for the age-old question, tissue or mechanical?

 

[rich01]

Good luck.

Hope it's not in bad taste to ask this question, but I wonder if fixing aortic valve at earlier stage would prevent damage to other valves? I know there was a study that indicated that moderate stenosis is just about as serious as severe stenosis.

 

[Superbob]

Sounds like you are well-informed and in the best of hands. Wishing you all the best. Looking forward to further reports, including post-op and recovery.

 

[sylviayasgur]

Wishing you all the best, Herb. Looking forward to hearing how it all went!

 

[KatherineA]

Wishing you all the best!

Being a newbie here, I don’t have much experience to share. I can share my experience with Dr. Svensson. My advice, based on that, is to make clear your expectations about communications with Dr Svensson in your preOp appointment. That is, Depending on your feelings about doctors and communication.

I just had surgery with Dr. Svensson on January 7, 2020. He was an excellent surgeon - I think. I was out of the hospital on the afternoon of the 4th day. One day/night in ICU. I was home in WV on January 15 after a perfunctory checkup by his staff on Jan. 14

ive healed with no issues. I assume because he knows his stuff.

I had the aortic warn out bicuspid valve replaced and what he called a “nip tuck” to the aorta to reduce its size from 4.5. I don’t know what that means exactly because he did not speak substantively to me after the January 6 preOp. I’ve got an idea based on this Forum (thank you) and other internet sources.

During the PreOp, I found Dr Svensson extremely uncomfortable with communication. Instead, of speaking to me, he turned and spoke with my husband!!! Maybe since you are a guy, he will actually speak to you. .

He also is not particularly fond of yoga or yoga teachers I think. I am one. Those were the only notes I saw on his folder with circles and stars.
I am not sure if that was good or bad

I saw him once after surgery and that was the morning after about 6 am on Jan 8 when I had just violently thrown up all over 2 poor nurses. After that, I only saw his residents or fellows who could not (they said) answer specific questions about my surgery and what happened to change his mind from minimally invasive we discussed on Jan 6 to full on OHS on Jan 7. So I still have no idea about the rationale or exactly what he did to the aorta.
P.S. I’m 69 years old if that helps and active. 70 in May.

Anyway. Ask your questions of him when you have the opportunity.

 

[vitdoc]

When I had my second aortic valve in 1983 when my tissue valve had failed I went to Texas Heart and had Denton Cooley do the surgery. I swore he was on roller skates for the pre op in and out of my room in less than one minute with his entourage. I basically communicated with a cardiologist who was assigned to me. Cooley was involved in many cases that day and had no time to chat. So in a busy place like the Cleveland clinic you often deal with intermediaries. When I went back in 2006 for my aorta and redo valve I had a pretty good chat with the surgeon Dr. Coselli but I never saw him again. He left for a meeting right after my surgery. I thought that a line was left too long in my neck (5 days) and that put me at risk for an infection. So I had a hissy fit and got the head of infectious disease to come by. They took the line out but I think they were glad I was gone when I left. Being a surgeon myself caused me to be less passive than the average patient. I think the patient or their representatives sometimes need to be squeaky wheels in a nice way.

 

[Paleowoman]

After that, I only saw his residents or fellows who could not (they said) answer specific questions about my surgery and what happened to change his mind from minimally invasive we discussed on Jan 6 to full on OHS on Jan 7. So I still have no idea about the rationale or exactly what he did to the aorta.

Hi @KatherineA - my surgeon switched from her planned minimally invasive to full sternotomy. I didn't mind because I knew that good access is the important thing, but I did mind that in the Operation Note she didn't say why she switched, and I reckoned that was something that might need to be documented for a future surgeon when I get a "re-do". So I wrote to the surgeon and eventually got a reply (she couldn't access my aortic valve with the mini sternotomy due to the position of my aortic valve in relation to the 3rd and 4th intercostal spaces). I aked her to do an addendum to say that to the Operation Note, but she didn't, so my cardiologist attached her letter to the Op Note. Some surgeons are rather uncommunicative ! Maybe that's why they become surgeons ?

 

[KatherineA]

Thank you @Paleowoman. I just want to know why because, I know, with the biological valve, likely there will be a next time, especially since I plan to make it past 80. Anyway, I have written twice and called him once. I am stubborn and will prevail because, I and whoever touches me next time needs to know.

I believe too that surgeons are required to take all 3 levels of How not to communicate as part of their residency

PS I think I was offered release on day 4 because I was squeaking a lot and obviously recovering ok.

 

[tom in MO]

For comparison, my surgeon, Dr. Keith Allen at St. Lukes Hospital (KC, MO) saw me for two pre-op consultations. He stopped by my room most every day during the week but not on the weekend. I saw a gaggle of interns M-F along with the surgeon of the day and Dr. Allen's intern or nurse practitioner every day. He saw me once in his office about 3-4 weeks after release from the hospital. I had a full sternotomy but not as long as most. Dr. Allen expressed pride in the smaller size and good looking scar. It's not very noticeable now after 7 years.

 

[Seaton]

Great that you have a date at last, Herb!

I remember April 4th last year for me. Meeting with my surgeon for what I thought would be another chat about continuing to watch and wait (as my cardio chats had been since 2015), but instead he suggested it was time for surgery.

I got the initial impression surgery would be in about two months’ time, but turned out to eventually be over four months later on August 7th, two weeks after a previous surgery date I’d be given was cancelled. But I was fine with that ... simply going with the flow.

There’s infinite support from the active and wise souls here and great access to the forum’s extensive archive, as you know.

I look forward to your updates and wish you the very best for the days ahead. Keep us posted!

 

[AnnieP]

40 years as a nurse and midwife from observing patient interactions I agree ,informed consent is a requirement for surgery seldom seen in practice.

 

[bizinsider]

As someone in the Waiting Room, your attitude is refreshing. Now for the age-old question, tissue or mechanical?

Tissue. The Edwards Perimount 2700. Dr. Svensson made it clear the mechanical will last considerably longer, especially with the composite root graft they will be using, but agreed that at my age (I'll be 68 in June) a tissue valve is fine. Lifespan 10-20 years, but probably on the early side. That would then likely be replaced via TAVR, with the full knowledge that since I have a right-bundle-branch-block I might at that time need a pacemaker. That works for me!

 

[bizinsider]

Good luck.

Hope it's not in bad taste to ask this question, but I wonder if fixing aortic valve at earlier stage would prevent damage to other valves? I know there was a study that indicated that moderate stenosis is just about as serious as severe stenosis.

That's a great and astute question and I just learned the lesson with my latest visit: For all of this time my bicuspid aortic valve was the issue. With this last visit, it appears the mitral valve also has shown signs of starting to leak. The surgeon thinks that is caused from the severity of the regurgitation I have, which has also pressured the left ventricle. From that point, as I understand it, there is a domino effect. With the repair of this valve (and the other things they'll do) he believes the LV and mitral valve should repair, or as they call it – remodel – themselves.

I had not seen that stenosis study you are referring to but I had been told I had moderate stenosis and mild-severe regurgitation. I think the CT w/contrast showed the severity of the stenosis. And the regurgitation apparently can swiftly change. Their advise to me is to ignore the numbers and labels and just focus on getting things fixed – and that my heart muscle is in such good shape that I am likely to have a good outcome.

 

[bizinsider]

Sounds like you are well-informed and in the best of hands. Wishing you all the best. Looking forward to further reports, including post-op and recovery.

I intend to keep everybody posted. The posts on this forum and others have given me tremendous insight over the years on what to expect. It is my intention to pay it forward, with brutal honesty along the way. Without these forums we all would be doing this in the dark. I pity those who have no idea they exist. Short of this event being an "oh my god I had no idea and they said it has to be done NOW" moment, most of us here have or have had time to wrap our heads around it.

 

[bizinsider]

Wishing you all the best!

Being a newbie here, I don’t have much experience to share. I can share my experience with Dr. Svensson. My advice, based on that, is to make clear your expectations about communications with Dr Svensson in your preOp appointment. That is, Depending on your feelings about doctors and communication.

I just had surgery with Dr. Svensson on January 7, 2020. He was an excellent surgeon - I think. I was out of the hospital on the afternoon of the 4th day. One day/night in ICU. I was home in WV on January 15 after a perfunctory checkup by his staff on Jan. 14

ive healed with no issues. I assume because he knows his stuff.

I had the aortic warn out bicuspid valve replaced and what he called a “nip tuck” to the aorta to reduce its size from 4.5. I don’t know what that means exactly because he did not speak substantively to me after the January 6 preOp. I’ve got an idea based on this Forum (thank you) and other internet sources.

During the PreOp, I found Dr Svensson extremely uncomfortable with communication. Instead, of speaking to me, he turned and spoke with my husband!!! Maybe since you are a guy, he will actually speak to you. .

He also is not particularly fond of yoga or yoga teachers I think. I am one. Those were the only notes I saw on his folder with circles and stars. I am not sure if that was good or bad

I saw him once after surgery and that was the morning after about 6 am on Jan 8 when I had just violently thrown up all over 2 poor nurses. After that, I only saw his residents or fellows who could not (they said) answer specific questions about my surgery and what happened to change his mind from minimally invasive we discussed on Jan 6 to full on OHS on Jan 7. So I still have no idea about the rationale or exactly what he did to the aorta.
P.S. I’m 69 years old if that helps and active. 70 in May.

Anyway. Ask your questions of him when you have the opportunity.

Hi Katherine. I think the most important thing here for all of us is to have a successful surgery. After watching all of Dr. Svensson's videos and reading many of his studies, and things people had said, I did not expect to meet the life of the party. And given what I'm having done, I was far more concerned with talent than personality. He is very no-nonsense, but is also known to be one of the top surgeons (with a focus on valves/aorta) in the world. I did find him to be warmer and kinder than I had expected (as was Dr. Griffin, the very kind cardiologist I saw.) I'm more curious how you ended up seeing him! That is a stroke of luck!

All of the surgeons there who focus on the aorta are considered at the top of their game; he runs the place, so he is at the tippy top. I appreciated his straight-forward nature, especially when he told me the serious nature of the calcium around my valve and the risks that entails – and then immediately (with quiet confidence) added that he is "meticulous."

I think we all want a great connection with the person who is going to save our life – or extend it. (I did get him to smile once, which I consider a win.) But the reality is that we are not going here to meet our new BFF. The seeing fellows/residents is to be expected at a place like that with a surgeon like that. He apparently does a quick run-through. He's a high-volume surgeon, which is what you want for this - which is why I'm going to him. He does two surgeries a day and works two operating rooms at the same time. The fellows open you, close you. I'm good with that. When I pressed his nurse (Becky - my main contact) on it she said that he is very choosy about who works with him. (After meeting him, all I could think: "I bet he is.")

I'm just so impressed how well you see to have done. I'm 68 in June, so we're close to the same age. And I'm betting those stars were good. I'm also guessing that your yoga actually reassured them because it meant your body is in better shape than most.

Re full OHS - you mean full sternotomy? They all tell you that once they won't know for sure once they get in there. In my case, I was hoping he would say mini sternotomy but he explained that for my case the best results will be via a full sternotomy. I shared that with a semi-retired cardiologist at Mayo, with whom I had been going back/forth, and he said that is wise.

Which gets to my question for you: How has your recovery been? How was the pain? How are you today. You're just a month out. Inquiring minds want to know. I consider myself in good shape. I do mild pilates - nothing like you do in yoga. I'm hoping we get credit for trying to be on this side of healthy.

As for the aorta, that nip/tuck: Based on everything I've read if your valve needs to be replaced and your aorta is a certain size (based on your height/weight) they'll do a repair. The goal is to avoid a second surgery.

Katherine, I hope none of this sounded snippy or aloof. (Hey, it's 6:40 a.m. here, and I'm only mildly caffeinated.) Sometimes the written word can be misinterpreted. I'm glad you wrote your experience and hope my response did not offend you. Lots of people read what all of us write here so everything/anything we say goes into their dataset of trying to figure out what to do, who to see, what to expect. You just helped a bunch of people. I intend to go back and read all of your posts for insight.

Best,
Herb