Does anyone have any thoughts on the Ross Procedure?

[Warrick]

http://www.nzdoctor.co.nz/in-print/2011/august-2011/10-august-2011/when-more-is-moore.aspx

found these bits on that Temuka doctor, a few of his quotes stick out-
"In South Africa you read the fine print. If you don't read the fine print you are up **** creek without a paddle...you learn really rapidly when you sign something and you understand it, you don't tie yourself into things you don't understand,"
"New Zealanders are very trusting, far too trusting."

 

[atomlo]

Pellicle, all the things you have said are helpful. I find different perspectives help. I am weighing what I want and deciding on it. The surgeon I've been seeing is really pushing for the Ross Procedure. I am a little weary of that, but I guess that is what he specializes in.

spartangator thank you for posting on here. I like to hear why you ultimately made the decision for the Ross Procedure. Although doctors and a lot of medical articles seem to push for it, I'm weary because of how recent it is. At first I thought there must be one choice that is the best choice, but I think that the best choice is dependent on me. So hearing what made something the best choice for you helps.

 

[atomlo]

Pellicle, all the things you have said are helpful. I find different perspectives help. I am weighing what I want and deciding on it. The surgeon I've been seeing is really pushing for the Ross Procedure. I am a little weary of that, but I guess that is what he specializes in.

spartangator thank you for posting on here. I like to hear why you ultimately made the decision for the Ross Procedure. Although doctors and a lot of medical articles seem to push for it, I'm weary because of how recent it is. At first I thought there must be one choice that is the best choice, but I think that the best choice is dependent on me. So hearing what made something the best choice for you helps.

 

[pellicle]

...At first I thought there must be one choice that is the best choice, but I think that the best choice is dependent on me. So hearing what made something the best choice for you helps.

Your thought is exactly right. It it's always a personal thing and you know your situation better than I or anyone here can.

I hope you get that reply too.



Best Wishes

 

[pellicle]

Pellicle, ...

PS: I just checked your Bio and noted your age, I dunno if I saw that last time I replied suggesting there is no reason why you wouldn't get a good 20 years, maybe I did. None the less as this will be (if I understand it right) your first surgery and that you are 24 Years old I'd say that the Ross isn't a bad choice for you. With a heart valve issue in your history at your age (as it was in mine) I'd say there are strong chances you'll need a redo surgery at some stage. Like when my surgeon put me on a homograft in 1992 (about the year of your birth) I got 20 years out of that. I was 28 then. But that was my 2nd surgery, I'd had one before at 10.

So with the stats I see written in the various links and your age group I'd say go for the Ross (jaws are dropping aroun the world as this is read I'm sure), especially since you've ticked the major box of needing a Ross to be done by an experienced team.

My homograft was done by a team who were dedicated to that task. They really were leaders internationally in this area. I ended up needing another surgery at 48, but (as it happened) that coincided with an aneurysm discovery too.

Its true that two valves are interfered with, and putting in the prosthetic valve into the ticuspid valve position will perhaps require attention in the future. But (again referring to my poss on the morphology of the valve) putting a living tissue valve into the Aortic position (as long as its done right) will give you a great chance at extending the duration between surgery.

I hope I live long enough that I can follow up with you in 20 years time (I'll be in my 70's). Email me ;-)

There is no "best replacement part" except (as my surgeon used to day) the one God provides. Everything is a compromise involving risks.

Analysis is dish best had cold, but after the analysis its time for decisions. If there is two front line picks, then I say life is for taking chances, so at the end of the day, do with your heart on these chances and do what seems right to your feelings.

Best Wishes

 

[LondonAndy]

So with the stats I see written in the various links and your age group I'd say go for the Ross (jaws are dropping aroun the world as this is read I'm sure), especially since you've ticked the major box of needing a Ross to be done by an experienced team.

Yep: jaw has dropped. But knowing your experience and how much you have studied related matters, and having no prior knowledge of the Ross Procedure, there is no way I can comment. But I am curious: what is the advantage of the Ross Procedure over having a mechanical replacement valve - is it as straight-forward as avoiding anti-coagulation (assuming it does that)?

 

[pellicle]

Hi

... But I am curious: what is the advantage of the Ross Procedure over having a mechanical replacement valve - is it as straight-forward as avoiding anti-coagulation (assuming it does that)?

I think that its reasonable for those who know me to question what would (on the surface of things) appear to be a backflip. So in addition to what I said above.

Spartangator hid his links well within his post by effectively just putting them as hotlinks to key words. It was easy not to notice them (which is why I always say (link) or just paste the entire link as the header to what I'm referencing to).

I will bold the points which stood out to me in relation to the specifics of atomlo 's situation

His links were:
https://www.ncbi.nlm.nih.gov/pubmed/24084276

RESULTS:

There was 1 operative death as well as 9 late deaths (3 in patients who no longer had the Ross). Survival at 20 years was 93.6% and similar to the general population matched for age and sex. Fifteen patients required reoperations on the pulmonary autograft (4 repairs and 11 replacements), 8 on the pulmonary homograft, and 4 other cardiac procedures. At 20 years the freedom from reoperation on the pulmonary autograft was 81.8% and on the pulmonary homograft was 92.7%, and in both was 79.9%. Preoperative aortic insufficiency, aortic annulus diameter ≥15 mm/m(2), and being a man were associated with increased risk of reoperation on the pulmonary autograft. Twenty-six patients developed aortic insufficiency greater than mild and 25 patients developed pulmonary homograft dysfunction (defined as moderate or severe insufficiency and/or peak systolic gradient of >40 mm Hg). At 20 years the freedom from aortic insufficiency was 62.6% and freedom from pulmonary valve dysfunction was 53.5%.
CONCLUSIONS:

Survival after the Ross procedure in this cohort was similar to the general population. Dilated aortic annulus and aortic insufficiency were associated with increased risk of developing aortic insufficiency. Pulmonary homograft dysfunction was common at 20 years.

and

http://ejcts.oxfordjournals.org/cont...ts.ezu038.full

[FONT="][SIZE=14px]RESULTS[/SIZE][/FONT][/COLOR][COLOR=#000000][FONT="] The perioperative mortality rate was 0.9% ([/FONT]n[FONT="][SIZE=14px] = 2). The incidence rate of early reoperation for bleeding was 5.9%. The actuarial survival rate at 10 and 15 years following surgery was 92.1 and 90.5%, respectively. [B]Ross-related reoperations occurred in 21 patients during follow-up: autograft dysfunction ([/B][/SIZE][/FONT][/COLOR][B][I]n[/I][COLOR=#000000][FONT="] = 9), homograft dysfunction ([/FONT]n[FONT="][SIZE=14px] = 6) and both ([/SIZE][/FONT][/COLOR][I]n[/I][/B][COLOR=#000000][FONT="]= 6). The rate of freedom from Ross-related reoperation was 94.7 and 87.7% at 10 and 15 years, respectively. The rate of freedom from reoperation for autograft failure was 97.6 and 91.5%, the rate of freedom from reoperation for homograft failure was 95.7 and 90.8%, and the rate of freedom from moderate or severe autograft regurgitation was 94.1 and 85.6% at 10 and 15 years, respectively.[/FONT]

additionally I followed up on Marie-62' suggestion and Google quickly found this

http://www.heart-valve-surgery.com/r...statistics.php

[FONT="][SIZE=14px]Overall, I learned that the long-term statistics of this double heart valve replacement surgery was very encouraging. Without going into all the data I coillected, here is some data for you to consider:[/SIZE][/FONT][/COLOR]
[LIST]
[*]Overall, 85% to 90% freedom from reoperation at 10 years.
[*]Approximately 75% to 80% freedom from reoperation at 20 years.
[/LIST][COLOR=#424242][FONT="]In fact, data from Dr. Donald Ross, the inventor of this technique (who first performed the surgery in 1967), showed freedom from re-operation at 75 percent twenty-five years after surgery. Also, we need to remember that much of this data was developed before 'homograft-wrapping' techniques were implemented.[/FONT]
[FONT="][SIZE=14px]Other clinical results from other surgeons include:[/SIZE][/FONT][/COLOR]
[LIST]
[*]Dr. John Oswalt from Austin, Texas reports that his patients are 92% free from reoperation seventeen years after surgery.
[*]Dr. Ed Raines, in Lincoln, Nebraska has had to redo 3% of Ross Procedure surgeries during the past ten years due to dilation of the root (prior to wrapping). Plus, Dr. Raines has not had a homograft fail yet.
[/LIST][COLOR=#424242][FONT="]Recently, I met with Dr. Paul Stelzer, of Mount Sinai Hospital in New York. Dr. Stelzer has performed over 500 Ross Procedures since 1987. Dr. Stelzer’s clinical results suggest that less than 10% of patients require re-operation up to 10 years after surgery.[/FONT]

in particular (and why I've left it for last) was the above point about "homograft wrapping" techniques. I believe that this is a critical success factor and why the surgery can only be done expecting the above results by a highly talented person who is also good at "arts and crafts". Having watched a few surgeons do work (sometimes on me) I can observe some are not deft with their tools ... others are. So just as some people do great sewing work and others do crap (I'm the knotted bundle of thread kinda guy with that) some surgeons are great others are adequate and rely on the body to heal itself.

I believe that I got above the average with my homograft because of the following points:

• an experienced team dedicated to the task of homografts and adroit in handling them
• the use of a cryopreserved valve which was (I had to wait) tissue typed and sized ideally for me
• an intelligent lifestyle which wasn't too crazy on drugs and bad diet and a good regime of exersize and healthy eating (I was cycling on average 60km a week back then)

All of which gave the new valve the best chance ...

Which brings me to this point: valve leaflet morphology ... these are living things.

http://circres.ahajournals.org/content/113/2/186

The actual leaflets of valves are (as I've posted before) stunningly (and I really mean that) delicate things. Designed to work embedded in a protective fluid bath (blood) and never be exposed to the horrors of direct exposure to gaseous oxygen (quite the reactive agent). Precisely because in nature that a valve leaflet is never exposed to oxygen (and the owner then expected to survive more than moments) they could evolve to have no protection to it.
The same is true for physical damage (not expected to ever be touched or manipulated)
Lets look at the morphology

although it is living tissue its interesting to see that to enable it to be so thin it has no internal vascular system; and why would it need it when its perfectly well exposed to blood!

Aortic Valve Cells

The aortic valve tissue architecture is synthesized and maintained by the resident valvular interstitial cells (VICs).2,5 In the healthy adult valve, VICs are largely a quiescent fibroblast phenotype, with a minor (

 

[Agian]

Brilliant.

 

[LondonAndy]

Ah, thanks Pellicle. I had assumed good AC management, and that combined with a mechanical valve would last very much longer.

 

[pellicle]

what the hell just happend to my post?

I edited ONE lousy word ... hours gone

ANGRY

​Probably atomlo will never read the conclusion ... ANGRY!!

{swearing}

 

[pellicle]

sigh

atomlo the bits missing now (piece of {SWEARING}{EXPLETIVE} vBuletin) essentially summarise to:

• there are good reasons why as a youth you may stand a good chance with the Ross
• in addition AC management may be something that you can't tackle (but maybe you can)
• the future is hard to see and even though a mechanical is your best chance for avoiding reoperation, perhaps other factors will drive reoperation no matter what

lastly I just wanted to express my disgust in this site software.

 

[zee112]

I had a Ross procedure when I was 8. It gave me 15 years and allowed me to reach the age of 23 to then have my aortic valve replaced. I don't think I would have have had this long had I gone with a tissue valve.. or two. . I wouldn't recommend it if mechanical is an option though, only because you're leaving yourself open to another operation, and not only that, but you will have two valves rather than one which will need to be eventually replaced.

 

[dick0236]

I had a Ross procedure when I was 8. It gave me 15 years and allowed me to reach the age of 23 to then have my aortic valve replaced. I don't think I would have have had this long had I gone with a tissue valve.. or two. . I wouldn't recommend it if mechanical is an option though, only because you're leaving yourself open to another operation, and not only that, but you will have two valves rather than one which will need to be eventually replaced.

I find zee112's post interesting......and my thought is like his. Why just kick the can down the road.......especially when you know that the current proposed solution is only temporary.

 

[LondonAndy]

I find zee112's post interesting......and my thought is like his. Why just kick the can down the road.......especially when you know that the current proposed solution is only temporary.

Whilst repeating that I have no direct experience of the Ross Procedure, and in the absence of other possible reasons to avoid a mechanical valve, I agree. If Atomio can manage with discipline the taking of Warfarin daily at about the same time, and a willingness to obtain a home meter to self-test his INR weekly and adjust the Warfarin dose as and when needed, all of which recognises that he will need a certain level of professional support, particularly initially at least, I think a mechanical valve is worth serious consideration with a view to avoiding repeat surgery as long as possible.

 

[pellicle]

Whilst repeating that I have no direct experience of the Ross Procedure, and in the absence of other possible reasons to avoid a mechanical valve, I .

Agreed (you shoud Google some of my past posts, which I mentioned in my first response)

http://www.valvereplacement.org/for...n/858986-ross-redo-after-15-years-and-options

 

[atomlo]

Thank you pellicle and LondonAndy.
Pellicle thats similar information I have found. I had been leaning towards a mechanical valve. Including the cardiologist I've been seeing for a few years I saw the 4th doctor about the surgery today. They all seem to push the Ross Procedure. One thing he mentioned is that there s a 2% a year risk of a major hemorage on AC drugs. So if you add it up theres a really good chance of having a major hemorage in 50 years. My heart murmer was brought on by a car wreck in which I did bad damage to my legs. When I asked the doctor what would have happened if this happened while I was on AC drugs, he said I would have died. My surgery is scheduled for Thursday. I'm going to go with the Ross Procedure.

 

[pellicle]

Hi

You're welcome

One thing he mentioned is that there s a 2% a year risk of a major hemorage on AC drugs

I believe these are overstated and represent a worst case situation with the so called "usual care" (which means miserable care) and that a well informed person taking INR reading weekly via a machine will be much lower.

The basis for that figure is data that is primarily obtained from elderly patients with a host of other different issues to us valvers.

None the less, you have made a choice and that's good

Best Wishes

 

[atomlo]

I meant to post this before. Somehow i missed it. Thanks zee112. dick0236 I think you have a really good point. Also there are a lot of people who post on here who had the Ross Procedure, have had repeat surgeries and push for a mechanical valve, but the doctor's i've been seeing are pushing for the Ross, so I will go with that.

 

[spartangator]

Apologies, atomlo, I missed your earlier message asking for more details of my experience. I sent some more info to your inbox in a private message.

 

[ashadds]

atomlo how have you been ? have you had the ross procedure