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csigabiga

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Hi All,

Long time lurker, second or third time poster. After 38.5 glorious years, it appears my aortic valve is finally ready to be repaired / replaced. I've done a lot of reading, here and in general, and this feels like one of the best communities for resources and help. The reason for surgery is that I've crossed the threshold into severe regurgitation.

I've been referred to an excellent surgeon in Toronto, and am trying to decide between a mechanical, a ross, or maybe even a homograft based on some things I've read here.

I've created some questions of my own, but I'm wondering if anyone has any thoughts or anything to add on what I should be asking (in general and to help determine which valve might be best suited to me). Below is a list of what I have so far.

Thank you in advance for taking the time to read!

____________________________________________________________________________________________________

Pre-surgery questions

This might sound like a crazy question, but are we even 100% sure I need surgery? Why do the results of the CT from Toronto suggest that my heart isn’t enlarged? (where as the previous MRI from Tel Aviv says it is enlarged)

Is there anything I can do now that will help the outcome of the surgery?

Can I travel to Victoria next week for a wedding?

Any limitations from now until the surgery date?

Should I get a covid booster before surgery date?

Can you give me a prescription from anxiety

I’m concerned about endocarditis. I’m concerned about wisdom teeth not being taken out (one impacted), occasional weird chest rash I get, swollen tonsils and frequent sinus infections.


Questions on Choosing An Intervention / Surgery:

Am I a candidate for a repair? How long do these typically last? Would you recommend it?

What about an Ozaki repair?

Am I a candidate for a Ross?
  • Are there any studies that look at Ross after 20 years?
  • What are the chances I’ll get 20 years out of a ross considering I’m male, my issue is regurgitation, and I have a mildly dilated root according to the CT)
  • If I do a Ross, is it guaranteed that I’ll be able to to TAVR on the pulmonary? How long do they typically last? Can you get more than 1 via TAVR if needed?
How do you feel about a crypto-preserved homograft? How long might this last someone my age and anatomy?

Concerns about a mechanical?
  • How long do doctors think it will last?
  • What restrictions will I have afterwards?
  • Will it be possible to visit / hike in deserted places? Eat whatever I want? Play reasonable sports (squash, jog, swim, scuba, hike, bike ride)?
  • At what point would I need to go to the hospital if I got injured? If I fell? If I were in a car accident?
  • How likely am I to develop a stroke or bleeding in general, if I self monitor INR?
  • How careful will I need to be regarding infection? How likely and what is the most probable way to get endocarditis?
  • How loud is the ticking?
  • Are there any differences between On X and a St Jude?
  • Is the risk of getting endocarditis equal with a mechanical, ross, and homograft?

Am I vulnerable for an aneurysm to develop? If so how likely and when is it most likely to happen (before 15 years?) Does that influence the choice of valve / procedure in your opinion

If I were your family, based on what you know, what surgery would you recommend for me?

Questions about Surgery

I’m afraid. What is the survival rate of this surgery for someone my age? (In general and yours)

As I get older and possibly need more surgeries, how much does the survival rate change? (scar tissue, infections)

Can you use glue instead of staples to patch me up

Is it possible to remove the breathing tube before I wake up?

Questions about Post Surgery

Can my family be there in the room when I wake up?

What medicine will I be on after the surgery? Any side effects I should be aware of?

During recovery, what kind of special supplies or equipment might come in handy?

Afterwards, how will it be best to manage my pain? How long at each step?

Can you explain what pump head is?

Do you have any resources for mental care and possibility of depression afterwards?

How long until I recover fully?

Will I be limitation free eventually after the surgery? Will I still need to be on blood pressure meds?

What are some signals that I'm having complications that would warrant a hospital visit post surgery during recovery?
 

Lucker

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Hello. I understand your anxiety, but also you are close to getting it over with finally. Lot's of questions, but all are reasonable. I'll share some of my knowledge. Sorry for my lame English. Also I am not a doctor, so these are mostly just my unprofessional opinions.

- This might sound like a crazy question, but are we even 100% sure I need surgery? - As hard a decision as it is, it's best to have it sooner, if you are confident with the surgeon. The heart damage from overload is progressing, so it's best to spare as much of the heart muscle cells as possible. May be you can wait a year for the Foldax valve in India, if you believe in it and want to try it.

- Should I get a covid booster before surgery date? - I would do this if the COVID threat was real. The COVID vaccine usually requires a couple of weeks to set in, and you probably have at least a month before surgery.

- I’m concerned about endocarditis. - As with a vaccine, I would totally have the teeth and all known infected places done before your immune system is compromised with a surgery. Actually it's a strict requirement from the doctors where I live. If you'll have endocarditis after that, well, your valve is to be changed anyway.

You can prearrange a repair or Ross or Ozaki with a surgeon, but the final decision is made after the surgeon opens you up and sees. As for Ozaki, a surgeon told me that it's a good option only if the aortic annulus is smaller than 25 mm, which is on the smaller side.

- Am I vulnerable for an aneurysm to develop? If so how likely and when is it most likely to happen (before 15 years?) Does that influence the choice of valve / procedure in your opinion - BAV means higher probability for aneurysms. When, noone knows, but the bigger the aorta is now, the sooner. Yes, the aortic diameter influences the choice of procedure, which can be limited to just the valve or involve the aorta and coronary arteries that need to be reattached to the graft.

Regarding questions about surgery - I wouldn't worry about that moments, as you have access to a good surgical clinic. It's an established procedure and it's better when the doctors use what they are accustomed to. Regarding the breathing tube, I had it twice after the surgeries, was not a big deal to me. Just remember not to panic and simply breathe through the tube. The better you breathe on your own through the tube, the sooner it will be removed.
 
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Sue

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Arlington VA
Good questions. Your doc should answer all of them. I’m looking at a TAVR in a few weeks. Please post your answers. And don’t forget to ask about meds
 

tom in MO

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One pre-surgery question to consider: What symptoms indicate an emergency situation that requires immediate surgery?

Good luck, it will go fine even if you do nothing.
 

pellicle

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Long time lurker, second or third time poste
Hey
now you've received good and encouraging feedback above, so I'm going to dismantle all your questions and instead hit to what I think is the nub of the issue (rather than all of the vines of questions which stem from your anxiety)
1664408989198.png

(photo of a wall in Prague in 2017, my 3rd OHS was in 2011)
basically if anyone is telling you its soon then its soon, best clarify if its "urgent" type soon or "monitor for a while" type soon. Keep this next point clearly in mind: you don't want to wait till its bad to do it because not only do you then have to recover from surgery you have to recover from all the damage done by having a bunged up bit of plumbing impeding your ticker.

Next I'm going to say don't be anxious (you may have just laughed but I'm serious), it brings nothing to the table.

1664409589780.png


Then there is the fact that this is a team sport, while you may be the prize striker you ain't the only player on the field: so do not try to learn everything about everything and digest hours of youtube bullshit before you go any further. (although this advice is likely too late)

The operation is one of the most successful interventions in the medical repertoire. Leave the actuals of surgery to the rest of the team. Focus instead on what you are expected to do, which is among other things decide what valve you want and why.

Everything else on your list has been answer here dozens if not hundreds of times and having lurked I'm sure you've seen people saying umpteen times: "I thought it would be a horror show but it was just tough" followed up by "a year later it was a non issue"

Think about that and reflect on the future, ask yourself what you want for 10 or 20 years from now. While that's also not in your control planning your future is what you must do not the rest of the team. You can plan but you ultimately don't have control over much in life



Best Wishes
 

tommyboy14

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Hello there,

I can add a few questions:

On Ross:

  • Will the Autograft last forever?
  • Dr. Paul Stelzer's article says: "Importantly, stenosis of the autograft has never yet been seen which makes valve-in-valve catheter-based therapy impossible for the failed autograft with current technology." Outcomes of reoperations after Ross procedure - Stelzer- Annals of Cardiothoracic Surgery
  • Does this mean that I Will require a reoperation for the aortic valve in the future, given that TAVI seems unlikely with current technology?

  • Dr. Skillington's article suggests that Transcather Pulmonary valve replacement carries a high risk of endocarditis. Does this mean any future pulmonary valve replacement will always need to be surgical? - says "Furthermore, the risk of IE with the Melody valve may be significant. A recent systematic review of 9 studies including 851 patients showed a wide range of the incidence rate of IE—from 1.3% to 9.1% per patient-year." - See DEFINE_ME

  • Given the risk of endocardities on the Pulmonary side, and the fact that TAVR cannot be applied to the autograft with current technology, Does my age mean multiple (at least 2-3) reoperations in the future?

  • An international study shows much lower survival of the Ross procedure in Germany and Belgium, where this operation is more common and when there is more long-term data: Long-term Clinical and Echocardiographic Outcomes in Young and Middle-aged Adults Undergoing the Ross Procedure - PubMed - Does this mean that the survival benefit of the Ross Procedure is mostly due to patient selection?

On Ozaki:

Most of the Ozaki results on freedom from re-operation are in Japanese patients. Is their physiology similar enough to my own for these results to be applicable to me?
 

pellicle

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Is their physiology similar enough to my own for these results to be applicable to me?
without any hesitation I tell you that there is more genetic variation involved with blood types than there is in the DNA any of the families of humans. In my life I have been stunned by the misconceptions many have that there are significant physiological differences between humans.

so yes, its similar enough
 

Lucker

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without any hesitation I tell you that there is more genetic variation involved with blood types than there is in the DNA any of the families of humans. In my life I have been stunned by the misconceptions many have that there are significant physiological differences between humans.

so yes, its similar enough
Genetically similar, but generally smaller in size, including heart and aorta size.
 

pellicle

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but generally smaller in size, including heart and aorta size.
if you've been to Japan you may find that's a historical thing. Humans of similar sizes exist in the non-Japanese parts of the world. I myself am not tall (around 167cm), so rather equal to most of the Japanese I knew and worked with while living in Japan.

Perhaps you have children in Russia too? They are rather smaller in size and have heart surgeries too.
 

Lucker

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if you've been to Japan you may find that's a historical thing. Humans of similar sizes exist in the non-Japanese parts of the world. I myself am not tall (around 167cm), so rather equal to most of the Japanese I knew and worked with while living in Japan.

Perhaps you have children in Russia too? They are rather smaller in size and have heart surgeries too.
I answered relating to Ozaki procedure, which can be done with smaller aorta and we don't know if the OP is small or not.
 

tommyboy14

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without any hesitation I tell you that there is more genetic variation involved with blood types than there is in the DNA any of the families of humans. In my life I have been stunned by the misconceptions many have that there are significant physiological differences between humans.

so yes, its similar enough


I am not a doctor. But the reason I suggested asking this question is because if you look at the the following article on mech valves in individuals from East Asia, it says: "Also, it is known that the risk of oral VKA-related intracranial hemorrhage is particularly high in Asians". So at least for mech valves, this is the reason that lower INR ranges are recommended in Asian countries. Clearly, this is different from the Ozaki operation, but as non-specialists, we dont know if there is something similar with the Ozaki that makes clinical results from Asia more or less applicable to individuals from non-asian background.

So I think the question is a valid one...
 
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pellicle

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So I think the question is a valid one...
in a sense all questions are valid, but I think that I answered why its not a problem.

you may say "none of us are experts" and I would take issue with that and would best phrase it as "I'm not an expert" ... however there are experts here, there are surgeons here and there are very well educated people here with a sh1t-ton of experience. Dismissing that is a bit rude and ignorant really.

For instance you say:
"Also, it is known that the risk of oral VKA-related intracranial hemorrhage is particularly high in Asians"

which is an entirely different thing to "valve haemodynamics" and also an entirely different thing to tissue healing and ...

The issue of VKA related dose response to INR (and not IC bleeds, which if you have something on that I'll read it with great interest) is well known. The bottom line there is that clinics seldom follow best practice (you know there are well established genetic based tests, almost never done) even at the simple level of monitoring INR and setting dose accordingly.

You appear to be making scrambled eggs out of extracting albumin.
 

Protimenow

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One thing that wasn't addressed here is your question about flying. With the severe regurgitation that you report, personally, I'd be a bit concerned with takeoff and landings. I might even be concerned with encounters with strong turbulence.

But, then again, you should ask your doctor. What the hell do I know?
Hey, Pellicle, ease up just a bit. You have to go through this site to find MDs (Vitdoc and Nobog), so it's probably a safe guess that the comment was made without the knowledge that there WERE MDs on this forum.
 

tommyboy14

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Just to be clear, I didnt mean to be rude. All I meant to say is that with a new type of surgery (Ozaki) that not many people have had yet (only a few on this forum had it recently I believe), it is worth asking questions including whether clinical results done elsewhere are applicable to you. If it was me I would ask the question.

I didnt mean to question anyone's expertise on all of the other options. Indeed, if you can keep your INR in range within 90-100% of the time, no one can deny that you are an expert.

I am not a native English speaker (it is my third language), so I dont know what albumin is.


in a sense all questions are valid, but I think that I answered why its not a problem.

you may say "none of us are experts" and I would take issue with that and would best phrase it as "I'm not an expert" ... however there are experts here, there are surgeons here and there are very well educated people here with a sh1t-ton of experience. Dismissing that is a bit rude and ignorant really.

For instance you say:


which is an entirely different thing to "valve haemodynamics" and also an entirely different thing to tissue healing and ...

The issue of VKA related dose response to INR (and not IC bleeds, which if you have something on that I'll read it with great interest) is well known. The bottom line there is that clinics seldom follow best practice (you know there are well established genetic based tests, almost never done) even at the simple level of monitoring INR and setting dose accordingly.


You appear to be making scrambled eggs out of extracting albumin.
 

Protimenow

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tommyboy - your language is good, and your message was clear.

I'm not sure that I agree with your '90-100%' of the time that you're in range is good advice. If you test weekly, it shouldn't be too difficult to stay in range - making minor adjustments then testing in 3 days or so can show you whether the adjustments were enough.

It is supposed to take more than a week with an INR below 2.0 to cause a dangerous clot (I had a TIA because I trusted a defective meter that the FDA later forced to be removed from the market) - but 90% of a year is more than 5 weeks.

Personally, I don't EVER want my INR below 2.0 - and prefer it closer to 2.5. I want to be in range 100% of the time. If my INR is a bit over the top of the range, it doesn't bother me.

The only time I would allow my INR to drop below 2 is if I'm preparing for a procedure or test that would be unsafe if my INR was too high.
 

pellicle

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Hi

I appreciate that english may not be your mother tongue, but the issue wasn't a linguistic one it was a science understanding one. So having said that if you genuinely want to discuss the issue of the Ozaki and why it may or may not be "valid only in Japan" please lets do that. However I'm certainly not an expert on that and may be wrong.

lots of people deny I have any expertise in managing INR with people, but that doesn't bother me. However setting that aside I don't know what you mean here:

Indeed, if you can keep your INR in range within 90-100% of the time

the "if" is really simple to achieve ... for the last (at least) 10 years I've been > 90% in range year on year with weekly (indeed on occasions far more) samples. I'd say that of the people I'm involved with and communicate about this topic that's true of them also.

I am not a native English speaker (it is my third language), so I dont know what albumin is.
albumin is the protein in egg whites (which a quick google would have revealed). Its extracted by carefully separating the yolk from the contents of the egg.

Basically if you scramble the egg the albumin is still there, but now essentially impossible to extract.

It wasn't that I was suggesting there was any rudeness, but that there was some racism (which is usually stemming from ignorance).

Myself I've heard it all over the years: race X has different digestion to race Y, race X has different blood to race Y ...

1664744260451.png


... stuff that I found hard to believe was true.

So I was trying to address that ... my apology if that did not come across clearly in my reaction.

My position is that people seldom attempt to inform themselves so much as adorn their arguments with feathers that they like the look of. Meaning that they find materials that support their view.

This is not research, it has a different name: Confirmation Bias Seeking.

I hope to address that in what I do but its tiring work (and seldom appreciated) but sometimes I'm just caught off guard by the enormity of it all (the task).
 
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Daniel758

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Just to be clear, I didnt mean to be rude.

Just to let you know, you were not rude. Pellicle was rude and he's routinely rude to anyone who does not 100% agree with/follow his "expert" opinions. It's just who he is.

It's too bad too because he does have some good input when he doesn't veer off into this rude jerk stuff.

Read through any number of his nearly 10,500 posts (yes, 10,500 posts) and you'll get a pretty good idea of who the guy is and how many poster's he's clashed with and/or run off in the past. I know I've been reading this forum for 4-5 years and I can't recall any other poster having even a fraction of the problems he has with other people.

My best guess is he probably can't control it because he probably scores pretty high on the DSM-5 for Cluster B Borderline Personality Disorder and Cluster B Narcissistic Personality Disorder.

So again, wasn't your language or your message, it was Pellicle being Pellicle.
 

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