Saying hi - 41 year old with BAV and surgery "soon"

[pellicle]

Hi

sorry to hear about the rapid changes, that's how it often goes though. I have one question: why the On-X?

, so I met with my surgeon today. I've scheduled my valve replacement (with an On-X valve) for Nov 29th.

its not that its a bad valve, but I wonder why suddenly so many people are coming here and posting about that valve when its not even mainstream (as far as I know) nor even "the best" (with unspecified criteria), seems to me its being marketed strongly now.

 

[Deepak khanka]

Thanks for everyone's kind words on this post. Almost immediately after posting this my symptoms got somewhat worse, so I met with my surgeon today. I've scheduled my valve replacement (with an On-X valve) for Nov 29th. I felt pretty well informed going into the discussion with my surgeon because of a lot of the things I'd read here, though I'm sure I'll have some more questions as the day draws closer.

I would be freaking out right now if it weren't for this forum and all of you, so I really appreciate the time everyone's taken to share experiences.

You are a warrior. Keep strong and carry on

 

[3mm]

I pray everything goes smoothly for you! I suggest you consider where you can go walking during your recovery, since PA can have serious cold and snow in December. In addition to walking outside, I consider my $350 recumbent exercise bike to be well worth the money during my rehab.

 

[PhillyJohn]

sorry to hear about the rapid changes, that's how it often goes though. I have one question: why the On-X?

The short answer as to why I'm personally choosing that is because my surgeon recommended it, and I'm choosing to limit the number of decisions I'm making to some degree. But I did ask him why he recommended it over other valves in the first place, and if not for this forum (and mostly you, to be honest!) I would not have asked that question.

He said the majority of valves he does are biological just because of the ages of most patients, but he also does many mechanical valves each year, and uses almost exclusively two valves now: The on-x and the "top hat", which I hadn't heard of.

He said the vast majority of his mechanical valves these days are on-x unless there's a question of whether it will fit -- apparently they're quite large -- because he prefers how they install where possible, and because he now feels comfortable about the historical performance of the valve despite it being somewhat shorter than other valves. He didn't mention the St Jude specifically.

So, his answers were pretty subjective but gave me some reassurance that he put some thought into the valve choice, and didn't blindly recommend it.

 

[PhillyJohn]

One interesting thing about my meeting - I expected, based on most of the threads here, to get some pushback when I asked about INR self-management, but my surgeon said that their practice strongly encourages self-management after the first few months. So maybe the tide is changing in that regard.

 

[tom in MO]

Hi

sorry to hear about the rapid changes, that's how it often goes though. I have one question: why the On-X?


its not that its a bad valve, but I wonder why suddenly so many people are coming here and posting about that valve when its not even mainstream (as far as I know) nor even "the best" (with unspecified criteria), seems to me its being marketed strongly now.

As PhillyJohn's surgeon said "because he prefers how they install where possible, and because he now feels comfortable about the historical performance of the valve despite it being somewhat shorter than other valves."

You really shouldn't place the reason for a medical procedure's popularity on marketing when simpler reasons will do. It's not always a marketing conspiracy. When asked my surgeon said he uses St. Jude because it's a proven performer, in-stock at the hospital and he's used to it. He would have installed an OnX if I wanted one. I figured "what do I know about valves compared to him?"

 

[PhillyJohn]

He would have installed an OnX if I wanted one. I figured "what do I know about valves compared to him?"

To that point, if my surgeon had suggested a St Jude's, I'd have been cool with that too. I don't plan on messing around with the lower INR guidelines of the OnX, although it was mentioned as a benefit. I didn't feel strongly between the two.

 

[pellicle]

I didn't feel strongly between the two

I had a learning one way, my surgeon has a leaning another. I've in the twelve years since actually done a lot of learning and suspect that On-x isn't what it's cracked up to be.

But I was only asking. Glad you're not intending to rely on the lower INR kool-aid

I hope that you have an uneventful procedure and a text book recovery

Best Wishes

 

[pellicle]

figured "what do I know about valves compared to him?"

I'm quite sure nothing, but apparently you also aren't interested in ever learning either, because you discourage it all the time.

You really shouldn't place the reason for a medical procedure's popularity on marketing when simpler reasons will do

You really should try to understand the difference between a question and an assertion. However the evidence as to why it's less desirable is mounting. So while I'm not saying it's a bad valve I am wondering why it's unable to actually perform to its claims and why you don't think that's undesirable?

 

[pellicle]

apparently they're quite large

Yes

 

[hevishot]

I hear a lot of good things about Dr. Raymond Singer at Einstein Medical Center Montgomery East Norrinton Pa. Good luck.

 

[slipkid]

He said the vast majority of his mechanical valves these days are on-x unless there's a question of whether it will fit -- apparently they're quite large -- because he prefers how they install where possible...

Interesting about the size comment there. I am kind of small in stature (not a midget by any means, about 5'8 or so) but get told things like "your mouth is really small" (by my dental hygenist) and I actually have to buy kid sized eyeglass frames of like 48/16 since adult ones hang off the sides of my face too much.

Also at time of my surgery in 2014 I was only about 135-40lbs (but have gotten fat this year, up to like 155 - would like to shed some of that to get back to a 30-31" waist instead of 32-33 now but I digress).

So I thought my On-x would have been rather small in comparison to most other people's valves. Lessee...looking it up on my On-x card...mine is "19mm".

Is that considered "large"? And what dimension is that anyways? A diameter across the middle? A measurement from top to bottom? What?

Regardless, best of luck to PhillyJohn, and welcome into the brotherhood of On-x-ers. Note that the Philly On-x chapter meets the 3rd Wednesday of every month downtown at McGillin's Ale House.

 

[pellicle]

but my surgeon said that their practice strongly encourages self-management after the first few months. So maybe the tide is changing in that regard.

I sure hope so.

reach out if you want some guidance on self management

 

[pellicle]

So I thought my On-x would have been rather small in comparison to most other people's valves. Lessee...looking it up on my On-x card...mine is "19mm".

Is that considered "large"? And what dimension is that anyways? A diameter across the middle? A measurement from top to bottom? What?

there's a difference between the size of the hole blood goes though and the size of the thing holding the flapps

 

[pellicle]

Is that considered "large"? And what dimension is that anyways? A diameter across the middle? A measurement from top to bottom? What?

This diagram

from this article https://www.sciencedirect.com/science/article/pii/S0022522319304842

TAD is tissue annulus diameter

should help with the basics

 

[Unicusp]

Interesting about the size comment there. I am kind of small in stature (not a midget by any means, about 5'8 or so) but get told things like "your mouth is really small" (by my dental hygenist) and I actually have to buy kid sized eyeglass frames of like 48/16 since adult ones hang off the sides of my face too much.

Also at time of my surgery in 2014 I was only about 135-40lbs (but have gotten fat this year, up to like 155 - would like to shed some of that to get back to a 30-31" waist instead of 32-33 now but I digress).

So I thought my On-x would have been rather small in comparison to most other people's valves. Lessee...looking it up on my On-x card...mine is "19mm".

Is that considered "large"? And what dimension is that anyways? A diameter across the middle? A measurement from top to bottom? What?

Regardless, best of luck to PhillyJohn, and welcome into the brotherhood of On-x-ers. Note that the Philly On-x chapter meets the 3rd Wednesday of every month downtown at McGillin's Ale House.

Hello. In my opinion, yes 19mm is smaller than what I recall seeing people get over the past 2 years. I'm almost 6' tall, lean, about 168lbs, and got a 23mm On-X. I recall seeing a normal distribution chart that showed incidence of size. Might be on one of the mft sites.
For your height and physical description, size sounds about right. Again, opinion. I'm no expert!

 

[3mm]

My On-X aortic valve is 23mm. I'm 5' 6", 137 lbs. Lifetime of running, martial arts, etc. Prior to surgery, my resting pulse was 50 bpm, even as low as 40 bpm if I sat still for a few minutes.

 

[pellicle]

My On-X aortic valve is 23mm. I'm 5' 6", 137 lbs. Lifetime of running, martial arts, etc. Prior to surgery, my resting pulse was 50 bpm, even as low as 40 bpm if I sat still for a few minutes.

great stuff.

All mechanical valves (even some of the old ball and cage valves like Dicks thats lasted nearly 60 years now) are expected to perform well ...

When did you get yours put in?

Here's to many more years

 

[tom in MO]

I'm quite sure nothing, but apparently you also aren't interested in ever learning either, because you discourage it all the time.



You really should try to understand the difference between a question and an assertion. However the evidence as to why it's less desirable is mounting. So while I'm not saying it's a bad valve I am wondering why it's unable to actually perform to its claims and why you don't think that's undesirable?

I agree, I know nothing compared to the surgeon and SO DO YOU know nothing compared to my surgeon. You consistently cast doubts on the OnX valve. You are not a cardiothoracic surgeon, a cardiologist, valve designer/maker or cardiac nurse. Maybe you own stock in a competing valve

 

[PhillyJohn]

Interesting about the size comment there. I am kind of small in stature (not a midget by any means, about 5'8 or so) but get told things like "your mouth is really small" (by my dental hygenist) and I actually have to buy kid sized eyeglass frames of like 48/16 since adult ones hang off the sides of my face too much.

I'm not huge either - 5'7" but pretty "broad" at 185lbs. My surgeon specifically said he sees issues with smaller women specifically - but I didn't press that point too hard since it apparently didn't apply to me. I suspect after reading a little about the "top hat" valve that the size issue has a lot to do with installation - as its name implies, the top hat sits more on top of the valve, where the On-X goes further inside.

Regardless, best of luck to PhillyJohn, and welcome into the brotherhood of On-x-ers. Note that the Philly On-x chapter meets the 3rd Wednesday of every month downtown at McGillin's Ale House.

First round is on me!