First post from Maryland - advice and support needed!

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Amy

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I have family in both locations so I know there will be support for my wife and 1 year old son
Hi -
I’m a bit late to the party; missed this thread somehow.

Unlike caro (above), I didn’t have a good experience at all with the majority of the staff, nurses and doctors included, before and after my AVR, at C.C...I’ve tried to find peace with all that happened, and excuse them as just being burnt out, but the truth is I had a shocking number of distressful encounters with indifferent, even cruel people.

For that reason, I was going to say you should try to have your wife with you as much as possible, so having support for her and your son will be critical.... but even better than that is if you are confident being your own advocate; and by that I mean, specifically, being sure enough in yourself to, on a daily, sometimes hourly basis,

-question why things are being done
-request they use sanitizer, especially before touching you
-insist on answers to important questions
-ask for what you need until you get it (took days to get a heating pad, more days to get ‘bundle care’, more days to talk to anyone at all for details about how surgery went)
-‘refuse procedures’ (which is what they’ll call it) to avoid sadistic, heartless people so you can get someone less rough and unfeeling

I would also offer that you should try to memorize the information you’ll want to know immediately post-op, regarding, for example, the drugs you’ll be on. My eyes were so blurred for days, I couldn’t read any of my notes or look anything up for longer than a few seconds.

Also, (and I don’t know how effective it will be, but) if I could do things differently, I’d stretch A LOT before surgery. Apparently your body is put in a weird position for hours, and most of the pain after (other than that from chest tubes poking you) will be from that. I don’t guess this would reduce peripheral nerve damage, but it could help with shoulder pain.

Best wishes to you. I hope it all goes smoothly for you.
 

MarkZ

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Amy (and others)
I’ve read about the shoulder pain quite a lot here but have read conflicting stories about the positioning issue during surgery. Has your shoulder pain been diagnosed by your (non cardiac) doctors? Is it persistent or did it go away? Is there any possibility that it could be referred cardiac pain?
 

tom in MO

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I had shoulder pain caused by the operation and the positioning of my left arm. I was treated with two drugs and a water heated pad with exercises prescribed by a physical therapist in the hospital. I kept up with the exercises afterward and was sent home with a 2-week prescription. It took several months to get back to normal. I was older than you though.

"Cardiac pain" is not something I suffered with an AVR. There was pain where they split open my chest and in my shoulder. The only cardiac sensation I had after the AVR is when they pulled out the two monitoring leads that were on my heart. That just felt weird not bad.

I went with my local hospital. Got great care. It's not just surgical care, but the post-op care is important too which you will not be getting from the Cleveland Clinic. My friend who works in a hospital said she'd in general not recommend her facility but she does go there because she knows they "take care of their own."

I have had 5 surgeries and in general I like my surgeons to be competent but humble. Surgeons view the VR operation as a success if it results in life, a pretty simple concept. Quality of life is not part of the metric. This statement from one of your consults would give me pause: When I asked him how much additional risk came with replacement of the root and hemiarch, he said “In my hands? Zero.” I asked my surgeon what the risk was for my AVR at age 55 and he told me that his problem patients were with people that had comorbidities which I did not have. When pressed, my surgeon said he'd never had a failure with someone presenting my condition. When I asked his failure rate, he said that he didn't know but had about 2 a year but they were very old and/or very sick patients.
 
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cldlhd

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I had shoulder pain caused by the operation and the positioning of my left arm. I was treated with two drugs and a water heated pad with exercises prescribed by a physical therapist in the hospital. I kept up with the exercises afterward and was sent home with a 2-week prescription. It took several months to get back to normal. I was older than you though.

"Cardiac pain" is not something I suffered with an AVR. There was pain where they split open my chest and in my shoulder. The only cardiac sensation I had after the AVR is when they pulled out the two monitoring leads that were on my heart. That just felt weird not bad.

I went with my local hospital. Got great care. It's not just surgical care, but the post-op care is important too which you will not be getting from the Cleveland Clinic. My friend who works in a hospital said she'd in general not recommend her facility but she does go there because she knows they "take care of their own."

I have had 5 surgeries and in general I like my surgeons to be competent but humble. Surgeons view the VR operation as a success if it results in life, a pretty simple concept. Quality of life is not part of the metric. This statement from one of your consults would give me pause: When I asked him how much additional risk came with replacement of the root and hemiarch, he said “In my hands? Zero.” I asked my surgeon what the risk was for my AVR at age 55 and he told me that his problem patients were with people that had comorbidities which I did not have. When pressed, my surgeon said he'd never had a failure with someone presenting my condition. When I asked his failure rate, he said that he didn't know but had about 2 a year but they were very old and/or very sick patients.
I get that, arrogant boasting isn't pleasant (although many Americans disagree apparently) , but at the end of the day I want the best surgeon I can get for the job regardless. Since we're not going to hanging out and having a beer together personality is not a big concern. FWIW the same surgeon told me I had a 2% risk if a bad outcome.
 

MarkZ

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Also I probably should clarify what I think he meant by that comment. He followed it up with commentary that the surgical failures tend not to be during the surgery but during the recovery, and that adding on CABG and ascending etc doesn’t add to those risk factors for experienced surgeons. For what it’s worth, Roselli has a video on his site saying the same thing in a patient-matched study.
 

pellicle

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I’ve read about the shoulder pain quite a lot here but have read conflicting stories
I prefer to think of them as simply different. Just because I didn't have pain does not conflict with another having it.

I had pain ... it took some time to normalise (not sure exactly, many months).

I also had a post surgical infection, this is simply a different experience not a conflicting one.
 

Amy

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Has your shoulder pain been diagnosed by your (non cardiac) doctors?
It is persistent alright, lol. It can’t be referred cardiac pain, I guess - it’s too long-lasting.

Honestly, and for your sake I hope your doctors are different, but every single medical person I’ve mentioned pretty much any kind of pain to, has done the same sort of shrug or put their hands up and said something along the lines of “you just had OHS - what do you expect?” Even in the hospital it took days to get a heating pad for it. I think they only finally did something for me because they were sick of my bitching, lol.

The good news is that the first week was the worst, and it has slowly gotten better - and it changes, and comes and goes, which makes it tolerable. (I haven’t taken anything for it since post-op week 2, though I use a heated corn bag every day and night.)

“No man can suffer both severely and for a long time; Nature, who loves us most tenderly, has so constituted us as to make pain either endurable or short.”
- - Seneca
 

MarkZ

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Thanks for your insight and advice Amy! I’ve actually had persistent cardiac shoulder pain for a few years now, which is why I asked. Although my cardiologists think it’s CAD related and not AV related. (the running theory is prinzmetal angina, so it’s not persistent in the sense that it’s 24/7, it comes in phases and only in evenings or early mornings — but it’s been an issue that I’ve dealt with since my late 30s)
 

MarkZ

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Met with Dr Svensson for the first time today. A couple significant differences between his plan and Dr Bavaria’s that I thought I’d share.

1) Bavaria wanted to do hemiarch. Svensson said he would prefer not, and suggested only a 2% aneurism rate over 15 yrs for patients in my situation who do not have hemiarch replacement I was pleased to hear that because it would suggest I won’t need circ arrest after all?
2) Bavaria was pretty intent on doing CABG while he was in there since I had a stent in my LAD. Svensson said he doesn’t plan to do it unless the cath shows a blockage which he said will probably not be the case.

Cath is tomorrow bright and early, maybe I’ll learn more then.
 

cldlhd

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Met with Dr Svensson for the first time today. A couple significant differences between his plan and Dr Bavaria’s that I thought I’d share.

1) Bavaria wanted to do hemiarch. Svensson said he would prefer not, and suggested only a 2% aneurism rate over 15 yrs for patients in my situation who do not have hemiarch replacement I was pleased to hear that because it would suggest I won’t need circ arrest after all?
2) Bavaria was pretty intent on doing CABG while he was in there since I had a stent in my LAD. Svensson said he doesn’t plan to do it unless the cath shows a blockage which he said will probably not be the case.

Cath is tomorrow bright and early, maybe I’ll learn more then.
That is interesting. Bavaria did my hemiarch and I was on circ arrest but then again I told him to do everything that might be needed while I "had the wheels off" as I didn't want a repeat surgery if possible.
 

MarkZ

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Mentioned this elsewhere but just to keep this thread complete - cath turned out clean so I’ll be having a standard Bentall with no extras.
 

MarkZ

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It is! But also a bit strange because I’ve been having angina for the past 4-5 years and my cardiologists up until now have been treating it as CAD all this time. What if it’s really the valve and dilated aorta causing the angina all this time? My gradients haven’t been too high all this time (until now, that is) so it’s still a bit of a mystery.

Also I had a heart attack two years ago, further implicating CAD! But Bavaria said he thinks my calcified valve threw a clot that led to the heart attack.

I think all these questions will be answered after I recover from my surgery and find that there is or isn’t still angina.
 

cldlhd

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It is! But also a bit strange because I’ve been having angina for the past 4-5 years and my cardiologists up until now have been treating it as CAD all this time. What if it’s really the valve and dilated aorta causing the angina all this time? My gradients haven’t been too high all this time (until now, that is) so it’s still a bit of a mystery.

Also I had a heart attack two years ago, further implicating CAD! But Bavaria said he thinks my calcified valve threw a clot that led to the heart attack.

I think all these questions will be answered after I recover from my surgery and find that there is or isn’t still angina.
I don't claim to have any expertise on the subject, I work for a water and sewer authority after all.... But there is a fair bit of plumbing involved...., But I could see something coming off of calcified valve causing a heart attack. I mean a heart attack is just a blockage of flow right? From what I know of the anatomy of the heart the coronary arteries tap into the aorta just downstream from the aortic valve so it makes sense I guess? It seems to me like it's not an entirely exact science, although I'm sure that's not what you want to hear right now, but I have a similar curiosity. I had my CT angio prior to my calf and it should I had calcification in a coronary artery. I was told I had CAD, it still listed on my medical file and I guess technically I do have it, but when they did the cardiac cath at the University of Pennsylvania hospital The surgeon who performed it said my arteries were large and clear so apparently the calcification was within the artery wall, aka hardening of the arteries. I only had it in one spot in the entire scan which I found a bit odd but either way the cardiologist wants me on a statin ( a mild pravastatin dose) just to be on the safe side. I have had two subsequent scans that actually showed less calcification than the original. Also the scans are open to interpretation so it depends who is looking at them I guess.
 

MarkZ

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I think his opinion was kind of extreme (as you know, he’s an extreme kind of guy haha). But the plumbing makes sense. Although when I looked it up in the past, I don’t think BAV patients are at higher risk for heart attack, so I don’t think this is a common occurrence. Hopefully that’s a relief to some of you BAV folks after reading my post!
 

cldlhd

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I think his opinion was kind of extreme (as you know, he’s an extreme kind of guy haha). But the plumbing makes sense. Although when I looked it up in the past, I don’t think BAV patients are at higher risk for heart attack, so I don’t think this is a common occurrence. Hopefully that’s a relief to some of you BAV folks after reading my post!
Yeah he is a little bit on the extreme side I guess, not to mention a bit on the confidence side? I don't think a BAV when necessarily make you more likely to have a heart attack but I imagine anywhere where there's plaque buildup it could happen.
 

dornole

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"he thinks my calcified valve threw a clot that led to the heart attack.
Jesus! I didn’t even know that was possible! "

For sure, that risk is why I'm on 325mg aspirin a day - I have my native valve with moderate stenosis and moderate regurgitation - cardiologist said flow is disrupted due to the calcification and that creates higher risk of a-fib, so risk of throwing a clot is elevated, plus in my case they poked a hole in my septum to facilitate valvuloplasty on the stenotic valve when it was severe, and that hole elevated the risk also, I think of stroke (?) but I don't remember for sure. Not enough that they want me on warfarin but full strength aspirin yes.
 

tom in MO

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Yeah he is a little bit on the extreme side I guess, not to mention a bit on the confidence side? I don't think a BAV when necessarily make you more likely to have a heart attack but I imagine anywhere where there's plaque buildup it could happen.
Autopsies are not routine. If someone with a BAV dies of a heart attack, nobody would know if it was or wasn't a clot that caused it. If the BAV was not previously diagnosed, nobody would know there was even any risk.
 

cldlhd

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Autopsies are not routine. If someone with a BAV dies of a heart attack, nobody would know if it was or wasn't a clot that caused it. If the BAV was not previously diagnosed, nobody would know there was even any risk.
You say "nobody would no there was even any risk", I don't know of any evidence that the BAV does increase your heart attack risk although I believe, what do I know, that calcification would.
 
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