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My Experience with the Ross Procedure

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-andrew-

Member
Joined
Aug 16, 2013
Messages
17
Location
Newcastle, UK
I’ve not posted on this forum for a very long time, but like many others I've gained so much knowledge and confidence from reading the various discussions on here. Thanks everyone for that support!

I have seen various discussions relating to the Ross Procedure (RP) and know that people come to this forum when making the tough decision on valve type. Therefore, for young adults that are in a similar position to that which I was in 11 years ago, I’ve summarised my experience with the RP below.

In 2002 at the age of 26 I had a RP to correct a leaking, calcified bicuspid aortic valve. I had no outward symptoms before surgery other than a short TIA 2 years before the operation. The surgery was performed in the UK by a respected surgeon who had performed many RPs previously, albeit on mainly younger (as young as <1 month!) patients.

I chose the RP for a number of reasons:

1. My surgeon worked out of my local hospital (The Freeman in Newcastle, UK), only 30 miles from home, and his recommendation for me was a RP.

2. My cardiologist was also very positive and confident about the potential outcomes of RPs, to the extent that his view was that the RP could last a normal lifetime. Thanks to this forum and reviewing various online articles / papers I never allowed myself to buy into this positivity and always assumed that I would need at least 1, probably more, repeat surgeries in my lifetime. However, it was still encouraging to see a medical professional that held such a positive outlook.

3. At the time, I was not keen to take on the responsibility of managing my INR levels and taking Coumadin for life. I wanted to minimise (and ideally avoid) any type of on-going medication and the RP potentially enabled this.

4. The RP was still a relatively ‘new’ procedure and the techniques for performing it and so potentially its lifetime were still developing. I was encouraged by the potential this offered and was happy to take the associated risk of the uncertainty of a developing procedure.

5. I was (and still am) a very active person (swimming, triathlon, road & mountain biking and snowboarding). At the time I thought that choosing a mechanical valve could limit these activities. I see from various posts on this site that this would probably not have been the case.

My surgery was uneventful (as the docs say!) and I was back to cycling, running and swimming within 6 weeks. I also managed the Great North Run half marathon 6 months after my surgery (although just missed beating the 2 hour barrier, which still alludes me but mainly because I’m a poor runner – nothing to do with my heart!). I think going into the surgery in good shape really helped.

For 10 years, the RP gave me exactly what I’d hoped for and other than my 6 / 12 month check-ups, my lifestyle was completely unchanged from before surgery. For 99% of the time I gave absolutely no consideration to my heart condition and just lived a normal, healthy lifestyle. Unfortunately, as now seems to be a common outcome in some patients who’ve had the RP, my aortic root became dilated over a period of 1.5 years and a final size of 5.7 cm led to repeat surgery this year. I understand that after somewhere around 2003 – 05 (in the UK at least), this failure mechanism became more well-known and that current RPs involve supporting the root if appropriate at the time of the original surgery.

I agreed to have a valve-sparing aortic root replacement conducted by the same surgeon at the same hospital, which was conducted 3 weeks ago. Apparently, both the aortic and pulmonary valves were in good condition and the function of the aortic valve seen in the echo performed 1 week after the surgery was good. My surgeon (who admits to being an optimistic person), sees no reason why the repair will not provide me with 20-30 years of operation-free living. I’m sceptical of that but happy to try and prove him right! So far, my recovery has been easier / quicker if anything than the first surgery, but it’s still early days.

So overall, although my RP failed after only 11 years, personally I am still happy with the decision I made and even with hindsight, would make the same call now. I’m now older, more responsible (slightly) and would be happy to take on the responsibility that comes with a mechanical valve and Coumadin if / when the time comes to replace one or more of my heart valves.

For me I found it so important to do my own research and to read the negative as well as positive aspects of the various options. After discussing my thoughts with my cardiologist and surgeon, I had confidence in their recommendation and my decision and went into both surgeries with a very positive outlook.

I wish everyone the best of luck in making their decisions and hope the above has helped at least a little bit.

Best wishes,

Andrew
 

Duffey

Me and Granbon
VR.org Supporter
Joined
Sep 29, 2004
Messages
5,243
Location
Far side of the moon
Thanks, Andrew, for posting your experience. As someone who wanted to have the Ross Procedure, I've had a few moments of "what if"? It's good to hear from someone who has had the procedure, had a re-op, but still is happy with their choice. Hopefully your experience will help others trying to make similar decisions.
Mary
 

epstns

Premium User
VR.org Supporter
Joined
Dec 26, 2002
Messages
5,143
Location
Chicago area
Andrew, it is good to "see" you back here, although I'm sorry that you had to go through another surgery. I thank you for your well-organized and thoughtful discussion of your experience with the Ross Procedure, as there have been more than a few folks asking about that procedure lately. Also, thank you for posting of your lifestyle maintenance through the past 11 years and your positive attitude following your recent repair. Success stories, even if they have a bump or two in their roads, are good for new folks to read. It helps them to realize that although we all have different experiences, the majority of us do very well after surgery and life can, once again, be good.

Good luck in your current recovery. Please feel free to come back and tell us about your progress and new successes.
 

Haoming Li

Member
Joined
Sep 21, 2013
Messages
6
Location
West Covina, CA
Hi Andrew,
I just registered in the forum on 9/20, I saw you have quite a lot of communications with many people, I don't know
how to do it, would you please show me.
I will need to do mitral and aortic valve replacement in the near future, wanted to look for a "good" surgeon, I live in
West Covina, CA, do you or any of your friends know anyone?
Thank you for your time and looking forward to hear from you soon.
Haoming Li
 

-andrew-

Member
Joined
Aug 16, 2013
Messages
17
Location
Newcastle, UK
Re: My Experience with the Ross Procedure

Hi. I'm pretty inexperienced with posting on this forum also, so probably not the best person to be helping, but for what its worth.... I use an app called Tapatalk on an Android tablet. It makes viewing the posts a little easier but is sometimes reluctant to send a reply. If that doesn't work, i just log in to the website and use the Quick Reply. Anyway, you sent your first post so I reckon you've already got it sorted!

I'm based In the UK so I'm afraid I can't help with recommending a good surgeon. I'm sure others on here who are more local will be able to advise.

Best wishes for your upcoming surgery.
 

mcsf

Well-known member
Joined
Sep 3, 2013
Messages
69
Location
california
Hi. I am new to the forum. I wanted to chime in on the Ross. I had the Ross Procedure in 1996 when I was 22. I never regret the decision. I was and continue to be very active and at a young age I did not want to worry about taking medicine. It has been 17 years since my Ross procedure and I have had no issues in the past 17 years. For young, active people I think the Ross procedure is great.

Seventeen great years later I found out I need to replace my valve again. With my last check up in September 2013 I was told it is time to replace the valve. I will have surgery in the next few months at Stanford in California. The same surgeon that performed my Ross 17 years ago will perform my next surgery.

I am still deciding on what kind of valve replacement I will undergo. For me the Ross was the only way to go when I was 22.

M
 

Arne

Active member
Joined
Jun 22, 2014
Messages
31
Location
Toronto, Ontario, Canada.
For those of you who had the Ross, did you have a bicuspid valve? And did you know the condition of your pulmonary valve at the time? Mine is supposedly leaking a little bit but I was told they could fix it and make it work in the aortic position.
 

river-wear

Well-known member
Joined
Oct 26, 2009
Messages
625
Location
Los Gatos, CA
Actually, all of the mechanical valves I know of (e.g., St. Jude, On-X) are bi-leaflet valves. The hemodynamics are good though.
 

Anand65

Member
Joined
May 20, 2020
Messages
5
Hi. I am new to the forum. I wanted to chime in on the Ross. I had the Ross Procedure in 1996 when I was 22. I never regret the decision. I was and continue to be very active and at a young age I did not want to worry about taking medicine. It has been 17 years since my Ross procedure and I have had no issues in the past 17 years. For young, active people I think the Ross procedure is great.

Seventeen great years later I found out I need to replace my valve again. With my last check up in September 2013 I was told it is time to replace the valve. I will have surgery in the next few months at Stanford in California. The same surgeon that performed my Ross 17 years ago will perform my next surgery.

I am still deciding on what kind of valve replacement I will undergo. For me the Ross was the only way to go when I was 22.

M
what was the cause of failure of the ross?
 

sylviayasgur

VR.org Supporter
VR.org Supporter
Joined
Sep 1, 2001
Messages
2,305
Location
Westchester, NY
Hi M,
my husband, Joey, had his RP in sept. 2001 and had a re-op in jan. 2019(also by the same surgeon who did his first surgery), this time replacing his aortic valve with a bovine.
Joey is now 68 (today). The reasoning for the larger bovine valve was that, in the future, when the valve needs to be replaced , TAVR will be so perfected, it should be a lot easier to do.
His surgeon, Dr. Paul Stelzer, mentioned he would be retiring in a few years and wanted to leave this in place for possible future surgery.
Hope this helps. please keep us posted. All the best to you!
 

Anand65

Member
Joined
May 20, 2020
Messages
5
Hi M,
my husband, Joey, had his RP in sept. 2001 and had a re-op in jan. 2019(also by the same surgeon who did his first surgery), this time replacing his aortic valve with a bovine.
Joey is now 68 (today). The reasoning for the larger bovine valve was that, in the future, when the valve needs to be replaced , TAVR will be so perfected, it should be a lot easier to do.
His surgeon, Dr. Paul Stelzer, mentioned he would be retiring in a few years and wanted to leave this in place for possible future surgery.
Hope this helps. please keep us posted. All the best to you!
why did your husband's RP fail, may i ask?
 

sylviayasgur

VR.org Supporter
VR.org Supporter
Joined
Sep 1, 2001
Messages
2,305
Location
Westchester, NY
Hi Anand,
Joey's aortic valve started leaking severely (dilated ascending aorta and dysfunction of left leaflet) after 17 years. In addition, his mitral valve started leaking as well (hence the repair ring). His left ventricle was enlarged as a result.
hope this helps!
 
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