first time poster

long time lurker

First mandatory THANK YOU, for all the good, no, great information, data and stories and sharing that people have done here. I've probably learned the most from all my research about my BAV.


Mines a somewhat interesting story, well, some people seem to think so. I was skiing with the kids in February, came over a rise to find a kid walking across the run snow board in hand (must have wiped out) that we couldn't see; I didn't hit him but did go down hard, knocked out and came to shortly after to find ski patrol putting me on a board.

3 broken ribs in my back, some blood on my lungs and a stay in the hospital for two days. After the chest scan doctor told me to follow up with my GP 'just to check my heart as I have a murmur" (had it since I was a kid) My doc sent me to for an echo then follow up to see 'a specialist' who turned out to be a surgeon! I was really surprised when the nurse asked when I wanted to schedule in the next few weeks- seems a step was missed by, well, telling me about my valve. Panic ensues!

Bicuspid, extremely calcified, down to .8cm, some regurgitation/possible small tear in one leaf and aorta enlarged to 5cm. Heart has some enlargement.

After two months of working the system, (US), I manage to get into Cleveland Clinic with my insurance, and luckily I'm within a few hours of driving.
Interestingly, as I don't see it done or mentioned here much, I'm now scheduled August 4th for an Ozaki procedure with Dr. Unai. The only doctor there who does them at CC. He's Japanese and had just returned from Japan where he was with Dr. Ozaki on the latest tweaks.

If he doesn't feel like Ozaki is the best once he carves in there, we'll do a Ross, and if he doesn't like that, a bovine valve.

It was so good to read about other people and their experiences, the times of going up and down, fear one day, then fascination by how it works, watching videos, then days of reading and researching data...then cycle back through it. Thank you.

Welcome to the forum and unfortunately welcome to the club. Of the three procedures you mentioned, which do you want and why? How old are you? Thank you.

sorry, I thought it showed up in my tags, but that was another forum.
Male, 52. Good shape...for the midwest of the States. I've been walking every day, but I've gained 7 pounds since my broken ribs, that was a long recover of pain and laying around.


At first I was all in for doing a mechanical, one and hopefully done. Per some doctor recommendations, we wanted to stay off of coumadin though. So research led me to the Ozaki. My first surgeon at Ohio State recommended the Ross, as he's a 'canadian surgeon and I won't like, there are a group of us who are big proponents of the modern Ross'. Turns out he's only done a dozen but assisted in many. PASS

Ross I like the data coming out, but basically doing two surgeries instead of just one valve, that's a lot of additional complication to go wrong.

Ozaki uses your own flesh they harvest from your pericardium, so less rejection etc. It leaves the pulmonary valve alone.
It's a newer procedure, but the data so far looks very good. Dr. Unai is very experienced in Ozaki and Ross (he said he's done 50+) and bovine and mechanical. (lung transplants etc too).

We walked through all the pluses and minuses of each, all my questions, and he didn't push any one in particular. My wife's a researcher so had some good stat questions etc.


So our pick is: Ozaki first, Ross second, bovine third, mechanical fourth.

Some more info:

I realized after the first discussion with the surgeon that I had symptoms I wasn't realizing, or maybe ignoring unconsciously as they got worse?
I thought I hit 50 and just ran into a wall, age. I started trying to work out three times within the last 12 months and just gave up, as it was so hard. I realize I would take the whole lift ride up to recharge for the next ski run, every time. Then just worn out at the end of the day. My heart was also doing weird strong pumps and stumbling it felt like. I thought it was just major stress at work.
I like to work on a fleet of cars/bikes I've collected and it was just so tiring to simply change tires.

Doc offices always ask 'do you feel winded after walking up stairs?'. I'm like, what does that mean exactly? Yes, I'm 50, I'll be breathing hard after I walk up the 3 flights in the car park after this appointment.


We have a doctor friend who looked at my echo etc and said very straight up "I think you need to face that you're symptoms are much worse than you are letting on, even to yourself". Good advice for everyone 'in the club'.

hostapasta:

From the National Library of Medicine,
Aortic Valve Reconstruction with Ozaki Technique
I suggest you read the Conclusion
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8973126/

I saw that paper early on in my search. Are you pointing to the recommendation of a mechanical?

"Despite the need for lifelong anticoagulation, the choice of a mechanical prosthesis is the recommended option for patients under 60 years, even if thromboembolic events, device malfunction, and spontaneous bleeding in the late decades are considerable disadvantages that usually concern and blur the patient’s choice."

Hi and welcome to the forum.

hostapasta said:

After the chest scan doctor told me to follow up with my GP 'just to check my heart as I have a murmur" (had it since I was a kid)

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So, you had the murmur since you were a kid, but you were never referred to a cardiologist? And this was something other doctors were aware of during your life but no one ever referred you and the BAV was not discovered until your ski accident? Standard of care would be to investigate murmurs to determine the cause. I think that you were very fortunate that this ski accident happened so that you could get the valve surgery you needed before tragedy struck.

hostapasta said:

We have a doctor friend who looked at my echo etc and said very straight up "I think you need to face that you're symptoms are much worse than you are letting on, even to yourself".

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He is right. It is very common for patients to attempt to explain symptoms away and hope that it is caused by something else, rather than face the reality that severe stenosis with symptoms mean that it's time for surgery.

Wishing you the very best of luck in your upcoming procedure. Please keep us posted.

hostapasta said:

I saw that paper early on in my search. Are you pointing to the recommendation of a mechanical?

"Despite the need for lifelong anticoagulation, the choice of a mechanical prosthesis is the recommended option for patients under 60 years, even if thromboembolic events, device malfunction, and spontaneous bleeding in the late decades are considerable disadvantages that usually concern and blur the patient’s choice."

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Yes.

The Ozaki is just a different form of a (very complicated) tissue valve. You are too young for a tissue valve. I have personally seen tissue valves last 6 months and others 20 years, so... you can play the odds.

Chuck C said:

Hi and welcome to the forum.


So, you had the murmur since you were a kid, but you were never referred to a cardiologist? And this was something other doctors were aware of during your life but no one ever referred you and the BAV was not discovered until your ski accident? Standard of care would be to investigate murmurs to determine the cause. I think that you were very fortunate that this ski accident happened so that you could get the valve surgery you needed before tragedy struck.


He is right. It is very common for patients to attempt to explain symptoms away and hope that it is caused by something else, rather than face the reality that severe stenosis with symptoms mean that it's time for surgery.

Wishing you the very best of luck in your upcoming procedure. Please keep us posted.

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I have had the murmur Chuck since childhood. I now recall my pediatrician mentioning it in the 70s/80s. Grumpy old dude retiring 'ah, whatever son, you may need that fixed in the future'. Frankly forgot about it. In my 20's my heart beat was irregular, which was found to be associated with too much stress (high stress radio job). They might have noted it. I lowered my stress and it went away.

I also got caught in "we won't cover pre-existing conditions" health insurance, before Obamacare (?) outlawed that eventually. They specifically excluded any coverage of my heart due to the irregular beat and my back pain/PT due to a few car accidents.
I've never had a cardiologist. Doctors would do the usual listen to my heart, mention it, and I'd say 'been there since childhood'. Maybe as I'm usually in very good health and no symptoms they just noted it. I think heart murmur is a really poor name, just sounds like your heart has a little extra whisper, kinda cute.

Yes, you're right, good thing for the broken ribs!! If I could, I'd find that kid and thank him. It reminded me of the parable of the good luck/bad luck farmer, you never know.

Thanks for the good thoughts!

nobog said:

Yes.

The Ozaki is just a different form of a (very complicated) tissue valve. You are too young for a tissue valve. I have personally seen tissue valves last 6 months and others 20 years, so... you can play the odds.

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Technically yes, guidelines say go mechanical but I'm choosing not to. Besides the usual bevy of complaints about mechanical, I've got other specific issues.
I'll be personal and frank here. I'm epileptic. I've had a few seizures, grand mal, which are under control now with medication, but my neurologist would highly prefer I have a tissue valve after discussion. Drug interactions. We've also been chasing dizziness, which were thought to be a sort of micro seizure, but now it could be the BAV. It will be interesting to see if those go away after recovery.
I'm also having other side effects, that I consider fairly serious, from the seizure meds and he'd like to try a long switch to something different, again drug interactctions. Also the possibility of a seizure and injuring myself (it happens, and head injuries from falls associated).

The car accidents I've been in had often had head trauma, the skiing accident made me think, there was bleeding at my lungs (sorry, I said head earlier) but without the ribs being broken, that might have been a real buzz kill with blood thinners if I'd just driven home for a few hours.

I've also gone on an annual trip with some friends for the last 25 years, we usually go sailing, Caribbean, med, now discussing south america. What if I'm injured on the boat (a lot going on while sailing the ocean) and a day or so away from any real medical care?

I'm playing my odds.

hostapasta said:

sorry, I thought it showed up in my tags, but that was another forum

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Correct, it doesn't


It's helpful to put year of birth there, nobody really cares about the month or date

Best wishes

Hi @hostapasta and welcome

so firstly:

nobog said:

The Ozaki is just a different form of a (very complicated) tissue valve.

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and with nothing like long term data for supporting the durability of it either. Long term means over 15 years.

Personally my view (to @hostapasta ) is to stop your analysis based on the surgery as the end point, and continue analysis from another angle: where do you want to be in 20 years ... looking at tests showing SVD or perhaps already having had your 2nd surgery? I can point to at least three members here who posted recently, who went tissue (even at 72) and didn't get as long as they wanted.

I would go with orthodox solutions with lengthy study history, not fancy fashions which may just not work out well.

Also I'd amplify this as being wise:

Survived03 said:

Of the three procedures you mentioned, which do you want and why?

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because you are making a bet here (and you ARE betting the farm) ... do you go with "red or black" and have good chances; or are you feeling lucky about Number 32 on the wheel?

Lots of good answers already, I urge you to read them carefully and would challenge your point here:

hostapasta said:

but without the ribs being broken, that might have been a real buzz kill with blood thinners if I'd just driven home for a few hours.

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accidents are so filled with variables as to be improper comparisons. I've seen stunning motorcycle accidents and the guy walked. I've seen simple offs and the guy was dead before I got off my bike and ran back to him.

Balls in the air are no basis for understanding the actual risks of "blood thinners", warfarin is not what people think



Best Wishes

hostapasta said:

I saw that paper early on in my search. Are you pointing to the recommendation of a mechanical?

"Despite the need for lifelong anticoagulation, the choice of a mechanical prosthesis is the recommended option for patients under 60 years, even if thromboembolic events, device malfunction, and spontaneous bleeding in the late decades are considerable disadvantages that usually concern and blur the patient’s choice."

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yes, the language used in that is deliberately emphasising fear. They are shaking a skeleton and a boogey man.

IF you want to actually inform yourself (not confirm the biases you may have) the above is not the data you need, instead you should listen to these presentations by Dr Schaff of the Mayo



a more current video


I think more than warfarin etc. This is the main issue of the valve replacement.

And listen to this presentation
https://www.medscape.com/viewarticle/838221

If you have problem with the flash player issue above then the audio is here:
https://bi.medscape.com/pi/editorial/studio/audio/2015/core/838221.mp3

PS: don't trust me, don't trust @nobog, don't trust anyone ... get the data, read the studies and follow the analysis. Trust the data and if you can't follow that data, ask here and see what people say and see if that's logical.



Best Wishes

I wonder if anyone has better data than this on the Ozaki durability

• one: which basically references this one source: https://pubmed.ncbi.nlm.nih.gov/23228404/
  Mean age was 69.0 ± 12.9 years (interestingly equates to 56 months).
  No thromboembolic events were recorded. The mean follow-up period was 23.7 ± 13.1 months. Freedom from reoperation was 96.2% at 53 months (under 5 years) of follow-up.
• two: Conclusions: The Ozaki procedure creates a good aortic valve with low stable gradients up to at least 10 years. Aortic regurgitation increased over time, but risk of reoperation was low. These results support the continued use of the Ozaki procedure for aortic valve replacement for any unrepairable valve pathology

HTH

Thanks pellicle, I've watched and seen your videos you link to several times previously and read many of your posts, read the studies I can follow and my wife has helped understand some of the data. I appreciate your passion. The conclusion of the study above didn't cause me fear, they all just list risks/associations.

As for risk, you do you and I'll do mine. I've done more risky crap in my life than the majority or people, so I'm pretty over it. Being a good dad to my kids over my 5 'cycles that sit in the garage now.

You pretty much missed the major point of why I'm not going mechanical though. I'm epileptic. I take 6 pills a day at set times to control seizures, plus pain meds for all that risky crap I did when I was young and two more for other issues. I'm not going to add up how many broken bones and surgeries I've had, but I'm not new to the scene of risk. People get hurt with seizures; often head trauma. If you've had a grand mal, you know you're in no shape or condition afterwards to take care of yourself for quite a while.

I'm no stranger to being on top of pill management and would have no qualms about doing my own INR. I am however having real side effects with my current seizure meds and my neurologist wants to try to switch them, adjust, work with some brand new ones that are out (it's a moving target to try to dial them in). He's very concerned about drug interactions as he frankly says there are too many unknowns still on interactions with drugs like Coumadin.
The side effects I'm having are not a risk/bet, they are fairly serious, they're here and they're real.

Also, how many of the seizure meds work exactly is only generally known, solid guesses and ongoing research. The human brain is so complex and our understanding of it so limited currently. I joke with my neurologist that his answers are always 'maybe'. I imagine the next big leap in knowledge will be the human brain.

Going mechanical to me is the real 'betting the farm'.

Hi

hostapasta said:

I've watched and seen your videos you link to several times previously and read many of your posts,

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that's good, I don't like to assume these things. Its hard typing away and spending 20 or so minutes involved in "conversation" when the other person can't raise a finger and say "oh, no, because ....."

I'd missed that you were having seizures

The conclusion of the study above didn't cause me fear, they all just list risks/associations.

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and that's good, because there is no reason for fear. I'm sorry if I've seemed to suggest otherwise.

My view starts with "there is no cure for valvular heart disease, we simply exchange it for prosthetic valve disease"

I've mistakenly pressed send here, so I'll edit this bit in and continue below

hostapasta said:

As for risk, you do you and I'll do mine.

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understood, indeed I'd assumed that is what everyone does ... I try to write from the perspective that you're an adult and you'll listen, consider, accept what you are inclined to, reject what you aren't and query what's not clear.

I hate the modern waste of time of having to tread on egg shells and effusive apologetic language like "well I'm not telling you what to do, but I wanted to say ..."

Its not me, its not really my age group Australian either.

You pretty much missed the major point of why I'm not going mechanical though. I'm epileptic.

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you are entirely correct, I missed that. Sorry

People get hurt with seizures; often head trauma. If you've had a grand mal, you know you're in no shape or condition afterwards to take care of yourself for quite a while.

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they do, I've a good friend of many years who's had this for most of her life (I've known her for 40 of those years) and she's fallend down stairs and whatnot ...

I'm no stranger to being on top of pill management and would have no qualms about doing my own INR. I am however having real side effects with my current seizure meds and my neurologist wants to try to switch them, adjust, work with some brand new ones that are out (it's a moving target to try to dial them in).

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understood and that's wise ... you need therefore to know that there is a not insignificant chance you'll need to be on ACT anyway with a tissue valve. Who even knows with the Ozaki ... you've probably read my posts and discussions here so probably know what I know and know what I think.

He's very concerned about drug interactions as he frankly says there are too many unknowns still on interactions with drugs like Coumadin.

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This is where we differ ... but then I'll just leave it there.

The side effects I'm having are not a risk/bet, they are fairly serious, they're here and they're real.

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I'd like to know what these side effects are, because all I can imagine is that its INR related.

Also, how many of the seizure meds work exactly is only generally known, solid guesses and ongoing research.

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understood, my friend found later in life that the earlier meds she was on had done more harm than good due to an error in diagnosis.

The human brain is so complex and our understanding of it so limited currently.

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agreed

I joke with my neurologist that his answers are always 'maybe'. I imagine the next big leap in knowledge will be the human brain.

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don't hold your breath on that emerging in our lifetimes.

Going mechanical to me is the real 'betting the farm'.

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see my above point about that being on the cards ... you wouldn't be the first person to go "anti ACT" to find (gulp) I need ACT.

Anyway, reach out if you want to chew the fat by phone or something.

Hat Tip

Best Wishes

I had my 1st ohs at age 34. In 1989, my surgeon said after a round table of surgeons met, that half would do mechanical and half would do tissue for me. That surgeon who was part of my medical group, ended up giving me a porcine valve because he had seen them last 15 years. I came thru surgery just fine and had a normal life as a wife and Mom to a 2 yr old. I felt great for 11 yrs when I was told I needed to have the deteriorating valve replaced. Unfortunately, I was given a fluid overload during a cardiac cath and went into congestive heart failure. My 2nd surgery was urgent and I was so sick going into it that, even though I had the “big guns” surgeon who was world renowned, he could not address my mod leaky mitral at that time. Then, 8.5 yrs later I got bacterial endocarditis, had to have 3rd surgery, a long, risky one, to replace everything. I only give you my story, not to scare you, but to say that sometimes things turn out differently than you expect. I actually survived my surgeries really well. It was what happened before the surgeries that made me sicker and more of a risk with each. I went into chronic a-fib after the 3rd surgery so I was good to go already on warfarin.
Good luck with the valve replacement and I hope you get the longest life from that valve custom made for you. I also wish for you very uneventful surgeries and amazing recoveries.

There is no perfect choice is there? Took me a bit to realize why surgeons put a lot of the decision making on the patient who knows so little. All of them have big drawbacks.
As my wife says: you made the best choice you could at that time, so don't beat yourself up" It's not like you'd choose to make a investment that turned out to be a huge loser. At the time you didn't say "I think I'll throw this money away".

I hope it goes well for me too! Thank you. I'm at least at Cleveland Clinic, arguably the number one heart hospital in the world. They do 5,000 a year. I've got one of the best surgeons in the world, especially on this newer technique.
Strange, you pull in and see in the valet line Bentleys and Rolls from Arabic people with entourages to large Asian families. They don't look like they're starving. Luckily they also take the common man...granted it did take me two months plus and pulling favors I knew, calls after calls after contacts, different calls, to get into the system, then just to start the process.
I'll be the latest addition to anyone here on information on the Ozaki Procedure (if Dr. Unai even decides it's ideal once inside).

like all in life, we make the best we can out of what we have.

Best Wishes