Finaly its going to happen friday the 23st

[Raoul]

Hi there, after 20 years the time finaly came. I am getting the Ross procedure done comming friday.
I found out 20 years ago that i have a bicuspid aortic valce thats hase caused an aneurysma.
For 20 years they monitored the aneurysma but it didnt expend.
Now it is my valve that is the biggest problem, because its suddelny calcified...
I thought my choise was between an biological en mechenical valve but the docters offered me the Ross procedure.
After a long time of thinking it over i made the decision for the Ross.
The hospital just let me know that it will happen comming friday the 23ste.
I am 45 years, overall in good condition and not aware of any other condition.
I am pretty stressed about it but also tired of the idear that it needs to be done, now i just want it be done.
So its going to be a special Christmas for me this year....
Its going to be done in the Netherlands, Leids Universitair Medisch Centrum, its one of the best known Hosspitals in the Netherlands.
So i trust that everything will be fine in the end....

 

[tommyboy14]

Hi Raoul,

I was in your shoes when I just turned 33. I had my first surgery with a bio valve back then. I just had my second heart surgery in May to get a mechanical valve (I couldnt have a Ross due to large aortic annulus). I found that the hardest thing is actually making a choice that is right for you and you are happy with.

I wish you the best of luck with your surgery ad will keep my fingers crossed for you that day. Having been through surgery twice, I can tell you it isnt fun at all, but modern hospitals and all of the cardiac nurses are amazing in helping you back on your feet. I suggest you take a good book (or your tablet with some fav netflix shows downloaded), some warm clothes (My room was really cold and despite asking a number of times, me catching a cold, it still wasnt possible to make it warmer), good external comms (I.e. phone etc) and finally, I took my own pillow - I found it reminded me of my home and my family when I was lying there sleepless at night.

Best of luck and please do let us know once you are on the other side.

Tommy

 

[Raoul]

Thank you for your reply (and tips), you are so right by saying that making the choise is the hardest part, i am so happy that that part is over.
Hopefuly next week i can let you all know that everything is well....

 

[pellicle]

Hi

and good to hear that you're soon leaving the waiting room and taking your journey to recovery

So i trust that everything will be fine in the end....

I believe it will work out well

Fingers crossed for an event free recovery

 

[Seaton]

All the best for your upcoming surgery, Raoul. And onwards to a good and steady recovery.

 

[sarashreen]

Wish you good luck and for speedy recovery. Which technique you are going to undergo in ROSS?

Here some info about ROSS techniques.

Which ROSS procedure technique ? Autograft rafting or sub coronary?

Reference:- Commentary: Bespoke Ross procedure: Best fit for patients with aortic regurgitation?

 

[Raoul]

Hi

and good to hear that you're soon leaving the waiting room and taking your journey to recovery


I believe it will work out well

Fingers crossed for an event free recovery

Thank you, realy appreciate it

 

[Raoul]

All the best for your upcoming surgery, Raoul. And onwards to a good and steady recovery.

Thank you

 

[Raoul]

Wish you good luck and for speedy recovery. Which technique you are going to undergo in ROSS?

Here some info about ROSS techniques.

Which ROSS procedure technique ? Autograft rafting or sub coronary?


View attachment 888941


Reference:- Commentary: Bespoke Ross procedure: Best fit for patients with aortic regurgitation?

Thats a good question, and i do not realy know....
What i have been told is that they use the material that they get from the other valve, so that looks like the autologous technique..?
The surgeon told me that they use this technique for the main reason that the valve can not descent in the future.
So people that have no aneurysma get the same technique (but its also fixing the aneurysma problem for patients like me)
I will ask him aabout it thurstday when i speak with him....

 

[sarashreen]

I am under the same boat as you. I had MRI and CT chest angio in October. My aortic regurgitation is severe now. I had OHS at the age of 6 for VSD closure and AV repair. Now after 30 years, I am going to have another OHS in February. First surgeon I met in Penn Medicine,Philadelphia did not recommend ROSS due to my VSD closure patch. I went for second opinion with ROSS expert surgeon in Mount Sinai, NYC. He told he would perform ROSS. I think He will do technique C for me. ROSS must be done by surgeon who performs high volumes of ROSS. Even though I have no severe symptoms, I have been recommended for surgery due to my heart enlarged and working double the load at systolic. So they told its better to do OHS instead of waiting for symptoms. Delaying surgery will damage the heart. it makes the condition irreversible if I fall into heart failure category.

I have listed below questions for my ROSS surgeon.

1. How many ROSS operations were immediately failed like schwarzenegger's first ROSS operation failed ?

2. Pulmonary autograft size same as aortic valve position? Does it fit?

The pulmonic valve is trileaflet.

Area: 535 mm-2

Perimeter: 88 mm

Diameter: 35 mm x 20.4 mm

Average diameter: 26.1 mm


Aortic Valve Annulus:

The aortic valve is quadricuspid.

Area: 5.91 cm2.

Distance: 31 mm x 26 mm.

Av diameter: 27.4 mm

Perimeter: 88. 2 mm.


3. MRI Shows pulmonary valve has gradient 9.36 mmHg. What If Pulmonary valve is calcified ? Does it survive in Aortic valve position?

Pulmonic Flow:

Peak Velocity: 1.53 m/s

Gradient: 9.36 mmHg

Forward Volume: 42 ml

Reverse Volume: 3 ml

Net Forward Volume: 39 ml


4. How long surgery goes? How much time in CPB machine?

5. Any chance for calcium on damaged aortic valve getting into arteries? I heard cases where calcium blocked arteries and someone has to go undergo another surgery for coronary artery bypass.

6. Dental clearance ?

7. Transcatheter angio needed before surgery?

 

[pellicle]

Hi

Here some info about ROSS techniques.

Which ROSS procedure technique ? Autograft rafting or sub coronary?


View attachment 888941


Reference:- Commentary: Bespoke Ross procedure: Best fit for patients with aortic regurgitation?

just a few quick points.

from the article

After 5 decades of technical refinement and improved postoperative management, the Ross procedure has become an excellent surgical option for younger patients with aortic regurgitation.​

option ... with regurgitation ... dig into the details and see how it stacks up when considering BAV and significant possibility of future aneurysm. I have observed that those people (me) are excluded from any such studies.

The Ross procedure obviates the need for lifelong anticoagulation, ​

This is a bit misleading as delays is the better term.

When opinion pieces like this are put forward you should ask a few questions (aside from the normal one of why bugger up a perfectly functioning valve for no real reason)

1. articles like this are not written for the general public, they're written for the surgical community (note the journal). So why is it that the overwhelming majority of surgeons don't do this?
2. long term studies are typically absent (since you're younger, you'd expect 30 years right? Not 10 or 15 right?)

You can always find someone who thinks that an Alpha Romeo is a better daily driver than a Ford. But judging by the numbers most people don't seem to think that way.

 

[pellicle]

How many ROSS operations were immediately failed like schwarzenegger's first ROSS operation failed ?

I don't believe it failed immediately.

if you want an honest answer don't ask the person selling the product, ask another surgeon who doesn't do the ross.

 

[pellicle]

How many ROSS operations were immediately failed like schwarzenegger's first ROSS operation failed ?

I thought about editing my above reply, but incase you see it before I finish editing it I decided to make another reply on the same topic

Think about the proportion of members here who've had The Ross and then wonder why so many say things like this:

https://www.valvereplacement.org/th...-soccer-dreams-on-warfarin.888515/post-915690

. I had one at the age of 20, and the valves lasted for 20 years. No meds, no restrictions other than no repetitive heavy lifting. I recently had both my aortic and pulmonary valves replaced again at age 40 and am on warfarin

https://www.valvereplacement.org/th...edure-and-life-expectancy.887753/#post-900741

If given choice now, I would lean toward mechanical, (with reinforcement of ascending aorta - to mitigate potential need of Reop in future due to aneurysm - a learning in last 25 years). Angst of anti-coagulants is overdone.

more can be found if you are actually doing "due dilligence" ... but I would ask are you doing due dilligence or is what is driving decisions the anxiety about warfarin?

Have you done due dilligence on that?

Ultimately my view is this: if you aren't going to manage your warfarin properly then don't get a mech and get anything else ... the ongoing surgical redos will be less of a risk in the next 40 or so years. If you are going to manage your INR properly and diligently (you know, like take 15 minutes a week) then that's your best bet to avoid reops (especially if you've already got an aneurysm. This is the reason why the majority of surgeries are as they are and the Ross is a hobby for surgeons who like to do complex work because its more enjoyable for them.

lastly, a critical analysis of an article on the Ross ... I suggest if you don't read things this way you are seeking confirmation of your bias (not seeking the closest to the truth by following the facts and data)

https://docs.google.com/document/d/1p3e74bFolm-Fj-GuFb0V9sJ8M9xDTHKsVNp6xbVojzM/edit?usp=share_link

Best Wishes

 

[sarashreen]

Hi



just a few quick points.

from the article

After 5 decades of technical refinement and improved postoperative management, the Ross procedure has become an excellent surgical option for younger patients with aortic regurgitation.​

option ... with regurgitation ... dig into the details and see how it stacks up when considering BAV and significant possibility of future aneurysm. I have observed that those people (me) are excluded from any such studies.

The Ross procedure obviates the need for lifelong anticoagulation, ​

This is a bit misleading as delays is the better term.

When opinion pieces like this are put forward you should ask a few questions (aside from the normal one of why bugger up a perfectly functioning valve for no real reason)

1. articles like this are not written for the general public, they're written for the surgical community (note the journal). So why is it that the overwhelming majority of surgeons don't do this?
2. long term studies are typically absent (since you're younger, you'd expect 30 years right? Not 10 or 15 right?)

You can always find someone who thinks that an Alpha Romeo is a better daily driver than a Ford. But judging by the numbers most people don't seem to think that way.

https://pubmed.ncbi.nlm.nih.gov/35210036/

 

[pellicle]

https://pubmed.ncbi.nlm.nih.gov/35210036/

from that:

Median follow-up was 12.5 years (IQR: 9.3-15.7 years).​

if that's how long you anticipate living into the future then you'll do fine

 

[pellicle]

@sarashreen

again I'm going to say if kicking the warfarin can down the road is the goal why not go homograft?

Slightly better results than a Ross, more open reporting and no need for ACT or ruining a functioning valve.

https://pubmed.ncbi.nlm.nih.gov/11380096/

There was a unique result of a 99.3% complete follow up at the end of this 29-year experience​

​

For all cryopreserved valves, at 15 years, the freedom was ​

• 47% (0-20-year-old patients at operation),
• 85% (21-40 years),
• 81% (41-60 years) and
• 94% (>60 years).

Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098).​

 

[sarashreen]

@sarashreen

again I'm going to say if kicking the warfarin can down the road is the goal why not go homograft?

Slightly better results than a Ross, more open reporting and no need for ACT or ruining a functioning valve.

https://pubmed.ncbi.nlm.nih.gov/11380096/

There was a unique result of a 99.3% complete follow up at the end of this 29-year experience​

​

For all cryopreserved valves, at 15 years, the freedom was ​

• 47% (0-20-year-old patients at operation),
• 85% (21-40 years),
• 81% (41-60 years) and
• 94% (>60 years).

Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098).​

this data published 2001(21 years agi)

 

[Raoul]

I am under the same boat as you. I had MRI and CT chest angio in October. My aortic regurgitation is severe now. I had OHS at the age of 6 for VSD closure and AV repair. Now after 30 years, I am going to have another OHS in February. First surgeon I met in Penn Medicine,Philadelphia did not recommend ROSS due to my VSD closure patch. I went for second opinion with ROSS expert surgeon in Mount Sinai, NYC. He told he would perform ROSS. I think He will do technique C for me. ROSS must be done by surgeon who performs high volumes of ROSS. Even though I have no severe symptoms, I have been recommended for surgery due to my heart enlarged and working double the load at systolic. So they told its better to do OHS instead of waiting for symptoms. Delaying surgery will damage the heart. it makes the condition irreversible if I fall into heart failure category.

I have listed below questions for my ROSS surgeon.

1. How many ROSS operations were immediately failed like schwarzenegger's first ROSS operation failed ?

2. Pulmonary autograft size same as aortic valve position? Does it fit?

The pulmonic valve is trileaflet.

Area: 535 mm-2

Perimeter: 88 mm

Diameter: 35 mm x 20.4 mm

Average diameter: 26.1 mm


Aortic Valve Annulus:

The aortic valve is quadricuspid.

Area: 5.91 cm2.

Distance: 31 mm x 26 mm.

Av diameter: 27.4 mm

Perimeter: 88. 2 mm.


3. MRI Shows pulmonary valve has gradient 9.36 mmHg. What If Pulmonary valve is calcified ? Does it survive in Aortic valve position?

Pulmonic Flow:

Peak Velocity: 1.53 m/s

Gradient: 9.36 mmHg

Forward Volume: 42 ml

Reverse Volume: 3 ml

Net Forward Volume: 39 ml


4. How long surgery goes? How much time in CPB machine?

5. Any chance for calcium on damaged aortic valve getting into arteries? I heard cases where calcium blocked arteries and someone has to go undergo another surgery for coronary artery bypass.

6. Dental clearance ?

7. Transcatheter angio needed before surgery?

That are some good questions, all i know is that the hospital is one off the best ones in the Netherlands and that the surgeon is the head of that hospital. He normaly does children (baby's and older), so he has got alot of experience with the Ross.
All those other questions about size and all are to difficult for me to understand.
I have faith in the hospital and faith in de surgeon. I also understand why rhis could be a good option for me. So i am happy that they gave me this option.
Reading this forum made me think less negative about warfine, so if during the operation he findsout that it is not as promising as the thought, they will give me a mechanical.
Still thinking and hoping it will go as planed and getting the Ross

 

[sarashreen]

That are some good questions, all i know is that the hospital is one off the best ones in the Netherlands and that the surgeon is the head of that hospital. He normaly does children (baby's and older), so he has got alot of experience with the Ross.
All those other questions about size and all are to difficult for me to understand.
I have faith in the hospital and faith in de surgeon. I also understand why rhis could be a good option for me. So i am happy that they gave me this option.
Reading this forum made me think less negative about warfine, so if during the operation he findsout that it is not as promising as the thought, they will give me a mechanical.
Still thinking and hoping it will go as planed and getting the Ross

Okay Raoul. I also felt relieved when Dr. Hamamsy at Mount Sinai confirmed me that he could do ROSS. Best of luck to your surgery. I hope it will be uneventful. Keep us posted.

 

[Raoul]

this data published 2001(21 years agi)

Okay Raoul. I also felt relieved when Dr. Hamamsy at Mount Sinai confirmed me that he could do ROSS. Best of luck to your surgery. I hope it will be uneventful. Keep us posted.

Thank you for your reply, will let you know when i get my answhere from the surgeon aboit the technique.
Also the best of luck for you the comming period.
My three mounths of waiting where pretty hard and stressful, how is that with you..?