What areas should i research more?

[jamie14512]

Hi all, I'm a 28 yr old male, I have BAV with severe aortic regurgitation, i have an appointment to finalize the details for open heart surgery next week.

I have done research into the following major areas:

-Different treatment options:
-Mechanical vs Biological - i have opted for mechanical
-Ross procedure
-TAVI vs OHS - wish to go for OHS

-Different mechanical valve options:
-the pros and cons of each
-i have opted for On-X (if available) or a St. Jude
-read a little about carbomedics

-Warafin management and INR

-Effective orifice area - I will ask my surgeon if it would be better to get a larger valve area

-Reading around areas such as Ejection fraction, Thrombosis, Endocarditis, Enlargement of the ventricle, blood sheer, aneurysm, Patient Prostesis mismatch, TIAs, Stroke, Paravalvular leak, AFIB, Pump Head



Are there any other major areas that i have missed that i should familiarize myself with/read up on/educate myself about in advance of my open heart surgery.

I would be grateful for any guidance.

Regards,

Jamie

 

[Zoltania]

This pinned thread in the Pre-Surgery forum could be helpful, although I wouldn't be surprised to learn that you had already found it yourself, given the thoroughness of your research so far...

Pre-surgery consultation - list of questions

 

[dick0236]

I assume you are a younger man under 60 or so. Your questions seem relevant. Seems like you have done a pretty thoughtful research already. Don't try to resolve all of your issues before surgery.......it'll drive you nuts, and this Forum can help with the post-surgery concerns.

 

[pellicle]

Hi and welcome

Hi all, I have BAV with severe aortic regurgitation, i have an appointment to finalize the details for open heart surgery next week.

I have done research into the following major areas:

-Different treatment options:
-Mechanical vs Biological - i have opted for mechanical
-Ross procedure
-TAVI vs OHS - wish to go for OHS

-Different mechanical valve options:
-the pros and cons of each
-i have opted for On-X (if available) or a St. Jude
-read a little about carbomedics

-Warafin management and INR

-Effective orifice area - I will ask my surgeon if it would be better to get a larger valve area

-Reading around areas such as Ejection fraction, Thrombosis, Endocarditis, Enlargement of the ventricle, blood sheer, aneurysm, Patient Prostesis mismatch, TIAs, Stroke, Paravalvular leak, AFIB, Pump Head



Are there any other major areas that i have missed that i should familiarize myself with/read up on/educate myself about in advance of my open heart surgery.

I would be grateful for any guidance.

Regards,

Jamie

Seems like you've covered it. Don't over think it and remember that there will always be some level of dice roll in life. It's like no plan ever meets reality without issues.

All you need to do now is ensure you understand those things correctly. I see time and time again misunderstandings and classical myths abound surrounding ACT and diet

Best wishes

 

[pellicle]

-i have opted for On-X (if available) or a St. Jude

just wondering what your rationale for that choice is?

This table makes one think that if one claim is not actually met in practice how many others are just "marketing dreams"

 

[pellicle]

Oh, and @jamie14512 don't have much in your About (like your age) and its confusing becuase it seems to suggest you've already had AVR.

Best Wishes

 

[jamie14512]

This pinned thread in the Pre-Surgery forum could be helpful, although I wouldn't be surprised to learn that you had already found it yourself, given the thoroughness of your research so far...

Pre-surgery consultation - list of questions

Thank you, yes i have found that one last night!

 

[jamie14512]

I assume you are a younger man under 60 or so. Your questions seem relevant. Seems like you have done a pretty thoughtful research already. Don't try to resolve all of your issues before surgery.......it'll drive you nuts, and this Forum can help with the post-surgery concerns.

Yes Apologises i've added my age to the post, i'm a 28 yr old man, Thank you yes i've done a fair amount of research. I feel well prepared at this point, perhaps i should relax more

 

[jamie14512]

Oh, and @jamie14512 don't have much in your About (like your age) and its confusing becuase it seems to suggest you've already had AVR.

Best Wishes

Thanks Pellice, in that case i will stick to the areas i've mentioned above and go through them to make sure i understand everything about those things.

For the on-x vs st jude debate, i've read through a lot of your post on the forum (which i am very grateful for) and after reading things like the PROSE and PROACT trial it seems you're right, there's not really much in it. And actually give the 25mm EOA limit on the on-x perhaps even st .jude might be better depending on my diameter. I guess i slightly lean towards the on-x because of the supposed improvement like the pannus guard, or maybe i'm just being drawn into the marketing.

 

[pellicle]

Good morning (well I'm about to hit the sack here)

Thanks Pellice, in that case i will stick to the areas i've mentioned above and go through them to make sure i understand everything about those things.

I'll just exchange "everything" for sufficient grasp (I really don't think any one person knows everything on any of the above topics (much less me)

For the on-x vs st jude debate, i've read through a lot of your post on the forum (which i am very grateful for) and after reading things like the PROSE and PROACT trial it seems you're right, there's not really much in it.

did you want to read some fluid dynamics stuff? Short answer was that the On-X has more "platelet trigger potential" in one direction than the St Jude (which has it in the other direction, and I forget which is which.

Platelets get banged on the arse and hit with a high pressure jet on open and closing jets ... basically IMO this puts them neck and neck.

The INR stuff as you have identified is a smoke screen and probably if they wished to spend the effort St Jude could do similar, but TBH when I read the details I'd say "no difference"

Pannus Guard I'm in the "no data and no studies" camp

Where I differ is physical size. They are rather large in size of the cylinder in which the stitching cuff is attached. Personally I think something smaller and lighter may just be better at not upsetting things (when my body gets bashed about, say in a car accident). Probably this is just my mind and so in reality its a coinflip.

But thanks for your rationale ... From my above you can see (and even from my prior blog post about it) I'm "6 of one half a dozen of the other data points please". Oh, and I did most of my reading after I got the valve (simply because I was curious).

And actually give the 25mm EOA limit on the on-x perhaps even st .jude might be better depending on my diameter. I guess i slightly lean towards the on-x because of the supposed improvement like the pannus guard, or maybe i'm just being drawn into the marketing.

I went to look at another motorbike today for exactly those reasons. When I put my bum on the seat I knew I'm not going that way and rode home without it. T-Max and SR are good to go.

If you're planning a one and done avenue you may find some of this helpful: https://www.valvereplacement.org/th...ace-my-mid-ascending-aorta.889477/post-931239

Happy to hear that anything I've written here has been useful. I'm sure that you'll get the hang of self testing quickly and depending where you are your NHS gives you strips for free. Hit me up if you want a leg up with a structured method.

Best Wishes for your procedure when it happens.

 

[Gail in Ca]

My top surgeon at Stanford chose Carbomedic top hat for my 2nd and 3rd avr (3rd due to endocarditis). I didn’t even want to assume to tell him which mechanical valve I wanted. I believe he did discuss st Jude, but went with Carbomedic both times. I’m only 5’7”, lean and he gave me 25m my last surgery as he wanted to give me the largest possible for me. He had to move it up the aorta and had also placed it into a hemashield graft that was crafted for me after he got in there. That was 09, so I guess some surgeons don’t have a preference. Interesting..

 

[nobog]

@jamie14512, Depending on your build, a 25mm is an "averaged" sized aortic valve. The OnX "carbon" size only goes to 25mm (23.4mm inside dia) then they hang a bigger cuff on it for their size 27/29. SJM has specific sized carbon for each size through 31mm.

 

[erricojj]

Welcome aboard, Jamie. I see you have AFIB on your study list. The AFIB risk was something I didn't really understand before the surgery. I had 1 episode 2 days after the surgery, but it did not return. They had me on apixaban for 3 months as a precaution.

Lowering Your Risk of Atrial Fibrillation After Heart Surgery

Also related to the surgery, is the risk of heart block or "AV block". For me, the outcome was the prescription of a pacemaker about 8 months post surgery. I have 2nd degree - type 2. Heart Block

 

[slipkid]

I think deciding on which manufacturer of the heart valve to go with is best left to the surgeon's preference, what he himself has experience with/what he prefers. Unless he brings it up to you giving you a choice/options.

That being said it is probably 6 of one and 6 dozen of the other (absurdly twisting the usual phrase to be silly).

Although regarding leaving the decision up to the surgeon you never know what their true rationale might be; for some maybe they own stock or get kickbacks from one vs the other!

Congrats on all your research, you've done a lot of work and are heading into this very well informed. Some of us (me at least) went into this knowing nothing about nothing and had no say in anything decision wise. Either way it still comes down to needing the surgeon & his team knowing & doing their jobs well along with mother nature and your body doing the work in the recovery phase. Best of luck to you!

 

[jamie14512]

Good morning (well I'm about to hit the sack here)

I'll just exchange "everything" for sufficient grasp (I really don't think any one person knows everything on any of the above topics (much less me)

....

Good morning,
Yes i don't have time to learn everything and its not necessary.

did you want to read some fluid dynamics stuff?

Thanks for the offer, i'm fairly happy with what i know, i don't even know if ill have the option on the NHS to decide on the valve and i'll probably leave it up to the surgeon, from what i've read, all the mechanical valves are basically the same.

Happy to hear that anything I've written here has been useful. I'm sure that you'll get the hang of self testing quickly and depending where you are your NHS gives you strips for free. Hit me up if you want a leg up with a structured method.

Yes, lots of very useful posts that have given me a base of what to research. Thank you, i'm not worried about self testing and managing my INR.

 

[jamie14512]

My top surgeon at Stanford chose Carbomedic top hat for my 2nd and 3rd avr (3rd due to endocarditis). I didn’t even want to assume to tell him which mechanical valve I wanted. I believe he did discuss st Jude, but went with Carbomedic both times. I’m only 5’7”, lean and he gave me 25m my last surgery as he wanted to give me the largest possible for me. He had to move it up the aorta and had also placed it into a hemashield graft that was crafted for me after he got in there. That was 09, so I guess some surgeons don’t have a preference. Interesting..

Yes i'll probably leave it up to the surgeon, whatever valve i get ill be happy as they are all so similar

 

[jamie14512]

@jamie14512, Depending on your build, a 25mm is an "averaged" sized aortic valve. The OnX "carbon" size only goes to 25mm (23.4mm inside dia) then they hang a bigger cuff on it for their size 27/29. SJM has specific sized carbon for each size through 31mm.

If i have a larger aortic valve, i assume it would be better to get a SJM in that case?

 

[jamie14512]

Welcome aboard, Jamie. I see you have AFIB on your study list. The AFIB risk was something I didn't really understand before the surgery. I had 1 episode 2 days after the surgery, but it did not return. They had me on apixaban for 3 months as a precaution.

Lowering Your Risk of Atrial Fibrillation After Heart Surgery

Also related to the surgery, is the risk of heart block or "AV block". For me, the outcome was the prescription of a pacemaker about 8 months post surgery. I have 2nd degree - type 2. Heart Block

Yes i've read a little about AFIB, one of my biggest fears post surgery.

Thanks for sharing about heart block, i don't know anything about that, i'll do some reading into heart block over the coming days.

 

[jamie14512]

I think deciding on which manufacturer of the heart valve to go with is best left to the surgeon's preference, what he himself has experience with/what he prefers. Unless he brings it up to you giving you a choice/options.

That being said it is probably 6 of one and 6 dozen of the other (absurdly twisting the usual phrase to be silly).

Although regarding leaving the decision up to the surgeon you never know what their true rationale might be; for some maybe they own stock or get kickbacks from one vs the other!

Congrats on all your research, you've done a lot of work and are heading into this very well informed. Some of us (me at least) went into this knowing nothing about nothing and had no say in anything decision wise. Either way it still comes down to needing the surgeon & his team knowing & doing their jobs well along with mother nature and your body doing the work in the recovery phase. Best of luck to you!

Yes i think i will leave it up to the surgeon. I'm not concerned what mechanical valve i got, as long as they don't put a biological valve in there by mistake

Thank you, i'm so grateful for all the contributors on this forum, there is a huge amount of info on this site which has saved me countless hours and helped inform my upcoming decision.

 

[tommyboy14]

Since you have aortic regurgitation, has anyone suggested that your valve could be spared?

Could you have valve sparing surgery? This is called a David or a Yacoub operation, but you get to keep your own aortic valve. It is also often referred to as aortic valve repair surgery.

Finally, I see that you are in England. There is now a new option called the Ozaki operation where they make a valve from your heart pericardium. The longevity in older people is very good, but it is unknown how long this will last in a young person. Dr. Cesare Quarto at the Royal Brompton in the UK does this surgery. I am not recommending this, you need to do your own research as you say, but for completeness I wanted to make you aware of this option.

Good luck with your surgery.
Tommy boy.