Ross Procedure

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T

teri

Hello...this is my first time here. My husband has a bicuspid aortic valve, and has been told he needs an aortic valve replacement. He will also need replacement of his aortic root due to an aneurysm measuring 5.2 cm. He is in excellent health, completely asymptomatic and 48 years old. We met with a surgeon yesterday who says he needs surgery within 30 days. He recommended the Medtronic Freestyle pig valve. I have done some research on the Ross Procedure, and it seems like a viable alternative for my husband. However, the Indianapolis surgeon we spoke with says that the Ross Procedure is becoming less popular due to problems that are being encountered. He says there have been many re-operations, and that one of the big issues is with an aneurysm forming later in the pulmonary root (which becomes the new aortic root.) As I reexamine my research, much of the positive information I found is from several years ago. Does anyone have any recent experience with the Ross Procedure or have information about it becoming controversial? We are, of course, scared to death, and just trying to get as much information as we can before surgery. Thanks.
 
As you can see from my signature, I had the RP almost 6 years ago. I am willing to answer any questions you may have.
I would also reccomend going to the link in my signature and joining that group and asking some questions there as well.

Ben
 
Hi Teri,

I am a 37 year old male from Tulsa with severe AI and a BAV . I am scheduled for the Ross Procedure on Aug. 8 in Dallas with Dr. Ryan. From all of the research I've tried to do, the Ross seems to be the best possible type of aortic valve replacement, because the new valves should last a very long time and the need for anti-coagulation is negligible. Unforetunely, the patient needs to be an almost "perfect fit" for the surgery to be completely successful (no valve surgery later in life). I think the Ross is less common now because it was very popular in the late 90's. So there were many procedures performed by less-experienced surgeons, and more of those are failing now. Surgeon experience is EXTREMELY important with the Ross. I chose Dr. Ryan for several reasons......he was highly recommended by several people, he has performed the Ross well over 150 times (I think it's more like 200 times), and he will only proceed with the Ross once the surgery begins if everything is perfect (perfect pulmonary valve, no apparent tissue connectivity issues that can occur with BAV, good aorta, etc.).

My back-up plan is the Medtronic Freestyle Tissue valve (root).

If you guys decide to go with the Ross Precedure, make sure it is with a surgeon with LOTS of Ross experience on patients with BAV. That may mean you'll have to travel to find that surgeon. I'm having my surgery 5 hours from home hoping and praying it'll be my one and only OHS. I know I am in good hands with Dr. Ryan.

I know it is very scary thinking about the surgery. My wife is putting on a strong face, but I know she is scared to death. Just remember that a VAST majority of people make it through OHS with little or no problems. Good luck with your decision and search. We'll be praying for you.

Lee
 
Keep in mind that one of the reasons that the number of Ross Procedures may be decreasing is that valve repairs, both for normal valves with ascending aortic aneurysms, and some other valve problems, have become more common. Hence, if the valve can be repaired, there is no need to go down the more complicated road of the Ross Procedure.
 
leecrowley said:
Hi Teri,

I am a 37 year old male from Tulsa with severe AI and a BAV . I am scheduled for the Ross Procedure on Aug. 8 in Dallas with Dr. Ryan. From all of the research I've tried to do, the Ross seems to be the best possible type of aortic valve replacement, because the new valves should last a very long time and the need for anti-coagulation is negligible. Unforetunely, the patient needs to be an almost "perfect fit" for the surgery to be completely successful (no valve surgery later in life). I think the Ross is less common now because it was very popular in the late 90's. So there were many procedures performed by less-experienced surgeons, and more of those are failing now. Surgeon experience is EXTREMELY important with the Ross. I chose Dr. Ryan for several reasons......he was highly recommended by several people, he has performed the Ross well over 150 times (I think it's more like 200 times), and he will only proceed with the Ross once the surgery begins if everything is perfect (perfect pulmonary valve, no apparent tissue connectivity issues that can occur with BAV, good aorta, etc.).

My back-up plan is the Medtronic Freestyle Tissue valve (root).

If you guys decide to go with the Ross Precedure, make sure it is with a surgeon with LOTS of Ross experience on patients with BAV. That may mean you'll have to travel to find that surgeon. I'm having my surgery 5 hours from home hoping and praying it'll be my one and only OHS. I know I am in good hands with Dr. Ryan.

I know it is very scary thinking about the surgery. My wife is putting on a strong face, but I know she is scared to death. Just remember that a VAST majority of people make it through OHS with little or no problems. Good luck with your decision and search. We'll be praying for you.

Lee

I agree completely. Even many very good heart surgeons are not suited to perform the RP.

Ben
 
Thanks to eveyone for your responses so far. I am especially encouranged that Ben had surgery at Cleveland with Drs. Smedira and Pettersson. We have been trying to get in to consult with them, so I will be even more anxious to talk with them now. Good luck, Lee, on your upcoming surgery. This is a wonderful forum, and I spent hours on it this morning, coming away with the assurance that we are most certainly are not alone in dealing with the issues associated with BAV!

Teri
 
one more reop here

one more reop here

teri said:
...
Does anyone have any recent experience with the Ross Procedure or have information about it becoming controversial?
...

Hi Teri - I'm actually post operative week 4 from my ross procedure re-op! my ross was performed by a very capable surgeon back in 1999. however the pulmonary autograft had issues from the get-go with moderate insufficiency that degraded over the years. i was a full time competive cyclist back then, so my activity exacerbated the situation. however, during my reop a few weeks ago, my aortic root (formerly pulmonic tissue) had to be replaced with a fabric 'sheeth' because of extreme dilation, as your surgeon talks about. i also had a bioprosthetic valve installed in the aortic position, and another homograft in the pulmonary conduit (since they were in there).

my aortic valve is a medtronic mosaic porcine valve (which sounds like what your surgeon is suggesting?). it's one of the so-called 3rd generation valves with special anti-calcification treatment to foster longevity.

i knew going into my first ross taht i'd likely face another aortic valve replacement sometime in the future. i did not think it would only last 6+ years. right now, it's too soon to say whether i'm happy or not with the mosaic since i'm still "breaking it in"

before my second surgery i got in touch with my original surgeon. he affirmed that, yes, they were seeing more ross reops, but we never got into concrete details like how many over what period of time, etc.

pm me if you wanna talk off line.
 
teri said:
Hello...this is my first time here. My husband has a bicuspid aortic valve, and has been told he needs an aortic valve replacement. He will also need replacement of his aortic root due to an aneurysm measuring 5.2 cm. He is in excellent health, completely asymptomatic and 48 years old. We met with a surgeon yesterday who says he needs surgery within 30 days. He recommended the Medtronic Freestyle pig valve. I have done some research on the Ross Procedure, and it seems like a viable alternative for my husband. However, the Indianapolis surgeon we spoke with says that the Ross Procedure is becoming less popular due to problems that are being encountered. He says there have been many re-operations, and that one of the big issues is with an aneurysm forming later in the pulmonary root (which becomes the new aortic root.) As I reexamine my research, much of the positive information I found is from several years ago. Does anyone have any recent experience with the Ross Procedure or have information about it becoming controversial? We are, of course, scared to death, and just trying to get as much information as we can before surgery. Thanks.

Not to discourage you, but I would be cautious moving forward with a RP if I knew going in that I already had an aortic aneurysm. At the same time that doesn't automatically mean the same thing will happen with the autograft. I agree with the others that picking a highly skilled surgeon who has a lot of experience with BAV patients is mandatory if you choose to go the RP route. The last thing you want is a surgeon with a cavalier attitude that makes promises he can't keep. I did not have a BAV so my RP was a bit more straightforward, but my surgeon did not make any promises that I would wake up with a RP. As it was he actually tried to repair my valve but didn't feel 100% sure it would be a permanent fix. He did tell me and my parents that I was a perfect candidate for the RP after the surgery. Good luck with your decision and I wish you and your husband the best possible outcome.
 
rachel_howell said:
If you have BAV and a root/ascending aneurysm, I think you can pretty much take it for granted that you have a connective tissue disorder. Otherwise, you would not have the aneurysm. See this link for a summary of the latest research: www.conferencearchives.com/aats2006/sessions/1500.PGAC.10/session.html. It used to be thought that the aneurysm formed due to hypertension, which in turn was a response to the regurgitation associated with valve incompetence. Now the data appear to show that root/ascending aneurysms in BAV patients are part of a syndrome associated with the overall condition, and that it all goes back to abnormal tissue in that part of the heart and possibly in other areas of the body. Having BAV with root/ascending aneurysm does not bode well for the longterm success of RP as an AVR option.

I don't think what you are stating here is a fair statement !!
I was tested for many, many tissue dissorders.....None found.
Granted, there are a bunch of them and I may very well have one, but the blanket statement you make is not been proven. It is just oppinion.

So far, six years out, I am doing well. No new aneuryms. And I know folks much farther out than I am that are doing great, even having BAV and aneursym before their RP.

I know oppinion is a big part of this forum, but this was a bit much for my taste !!

Ben
 
Teri,
I had a Ross in Oct. 2004. So far, everything has been fine, so I'm naturally a big proponent of the RP. If you're interviewing Ross Procedure surgeons, let me put in a plug for my surgeon, Dr. Paul Stelzer. He has more RPs under his belt than any other practicing surgeon. Several people on this forum went to him and we are all convinced he hung the moon.

When I found out I needed surgery, I began researching my options and found the RP. It looked like a perfect compromise. I still think so, but I guess you need to be the right candidate and you need the right surgeon. The best option is whichever one you feel the most comfortable with. BTW, don't be afraid to travel to find the best surgeon. My wife and I traveled to NewYork for my surgery and now we look back on those days after surgery as a very special time.

Be sure to let everyone know what you decide. The folks here can be a big help.

Good Luck.

David
 
Thank you David. And I know of Dr. Stelzer...I found info about him on line, and when I emailed him a few questions, he personally responded the next day. I was very impressed, but unfortunately he is in New York and we are in Indiana. We are hopeful to find a surgeon we like at the Cleveland Clinic, and fortunately, we have approval from our insurance to go "out of network" there. If we end up not finding a great surgeon there, we won't care about what insurance does and does not cover, and I'd want to go see Dr. Stelzer right away. Of course I'd have to convince my husband we don't care about the insurance...that is another story! Anyway, thanks for your input ~ this site has already been amazing! Teri
 
Teri,
I am 3 1/2 weeks post op. Ross Procedure. I am 52; just diagnosed with aortic valve stenosis in April. I was told I "don't need a Ross, dear", but was only given one option of a mechanical valve. I researched the Ross Procedure and found my own very experienced Ross surgeon out-of-town in Austin, Texas---Dr. John Oswalt. He was outstanding and has done many Rosses. His take on the decline in favor of Rosses is that it stems from inexperienced Ross procedure surgeons, the failure of the aortic donor valve in the past (which has now been changed to the pulmonary replacement of the aortic and use of the pulmonary donor valve), and to the fact that not many surgeons want to learn such a complex operation when they can do a higher volume of "quick and short" single valve replacements. I felt the Ross procedure was the very best option for me at my age and wanting to remain active. So far so good; we shall see. I encourage you to find a very experienced surgeon and go with your heart! I feel very fortunate to have been able to have this procedure under such gifted hands.
Good Luck,
Terry
 
Teri,
I wanted to correct one point I made regarding the Ross procedure. The primary problems in the past were with the fact that they initially did not replace the root in addition to the valve. That is my understanding.
Terry
 
hi teri,
my husband joey had his rp done on sept. 20,2001 (going on 5 yrs). as with david, we were fortunate to have found dr. stelzer right here in ny.
he has done so many rp's, i think he could almost do them blindfolded!!!
so far, so good...

i know that the cleveland clinic (where ben had his done) has excellent surgeons and if you could go there, i think you'd be equally happy with the results.

please feel free to email me with any questions.
wishing you the best.
be well, sylvia
 
There Are Still Not Enough Answers.....

There Are Still Not Enough Answers.....

Bicuspid aortic valves are emerging from being mentioned only briefly in cardiology texts and viewed as a relatively simple benign condition to the point where it is acknowledged that this is a complex condition involving not just the aortic valve but the aorta itself. The ACC/AHA 2006 Guidelines for Management of Patients with Valvular Heart Disease mention the issues with the aorta in those with bicuspid aortic valves. It is a great step forward in bringing greater awareness to the medical community that bicuspid aortic valves are more than just a valve issue, but there are still so many unanswered questions.

The full text of the following paper, published in the fall of 2003 by Dr. Gosta Pettersson and Dr. Richard Grimm of the Cleveland Clinic, is available online. I am going to list the link here. The subject is the use of the Ross in young adults. They make it clear that they are not speaking about children, which is a very different scenario.

Please be aware that there are graphic surgical pictures in the paper at the link that follows

http://www.hmc.org.qa/hmc/heartviews/H-V-v4 N3/6.htm

Regarding BAV and the Ross, this paper says "Patients with Marfan's syndrome or other connective tissue disorders have never been candidates for the Ross operation because of the presumed risk of autograft dilation and failure. David has raised the question of whether patients with bicuspid aortic valves beong to the same category(46)." It goes on to discuss conflicting findings in the medical literature. Figure 8 is a surgical picture of a BAV with a 4 cm aorta. Under the picture there is a question - "Does this patient have a tissue defect making him a bad candidate for the Ross operation?" Essentially, the question is not answered in this paper. Further along in the paper, patient selection is discussed. "Contraindications include Marfan's syndrome and other connective tissue disorders. Patients with bicuspid aortic valves might belong in the same category and are candidates only if they have no or mild aortic dilation." The paper ends by saying "Future generation bioprosthetic valves may well make allografts and Ross operations obsolete. However, limitations of present day bioprosthetic valves have kept allografts and pulmonary autografts in contention as an alternative."

People with Marfan syndrome have never been allowed to have a Ross procedure, so we do not know how much variation there might be in their results. Connective tissue problems in the body seem to have varying degrees of severity. I attended a Marfan meeting where there was a couple whose baby was born with a huge aorta, was on a beta blocker, and had aneurysm surgery at about the age of 2. At the same meeting was a man who was not even diagnosed until he was older - possibily around 60. So there are people on the extremes of all these conditions. The child would have had a very short life without surgery, while the other man went much longer than the typical Marfan before being diagnosed because of his eyes.

For Teri, who began this thread, according to this paper of Dr. Pettersson's, your husband with a 5.2 cm aneurysm would not be considered for a Ross procedure. I would encourage you to read the thread about DHCA and question surgeons about that as part of your research on aortic surgery.

I personally question the ability of anyone to know what will happen long term to the aortic tissue of someone with BAV. Visual inspection during surgery would not be enough to reassure me that my aorta will not cause a problem later. The only retrospective BAV study I am aware of, published by the surgical group in Milan, Italy, mentions that the aorta looked good at the time the bicuspid aortic valve was replaced, and yet when they checked on these people years later in many their aorta had clearly developed problems. Assuming that I was bicuspid and going in for surgery, I would be most comfortable personally with what this group from Milan recommends - but only if my aortic surgery is in expert hands. They recommend replacement of a seemingly normal and also a mildly dilated aorta at the time of the valve surgery. Below is the abstract from this group in Milan.

http://www.ncbi.nlm.nih.gov/entrez/..._uids=12440663&query_hl=1&itool=pubmed_docsum

Sometimes people might wonder if they can have both a Ross and ascending aortic aneurysm dealt with at the same time. Is it really even feasible to have a Ross and and the DHCA technique which removes the entire ascending aorta in the same surgery? The Ross procedure is understood to be a long and technically complex procedure. Aortic surgery with DHCA is extremely complex also. I doubt that both would be done equally well in the same surgery very often, and in a short enough time to be good for me if I were the patient. All things being equal, I would prefer DHCA and complete replacement of my ascending aorta above any other ascending aortic surgery technique.

As Rachel has indicated, Dr. Isselbacher's presentation, which was given just a couple months ago, presents the most recent understanding of bicuspid aortic valves. Yes, there is an underlying congenital connective disorder in those with BAV. The genetic reasons are being researched but have not been discovered so there is no genetic test for it, like they now have in Marfan syndrome. I would be interested in asking why a procedure that is not approved for the Marfan syndrome is thought to be acceptable for those with bicuspid aortic valves given today's understanding.

These are difficult questions. For all who deal with questions that today are the subject of debate, it is so important to be followed carefully regardless of the solution that is provided.

Best wishes to all,
Arlyss
 
Wishing you well

Wishing you well

Teri -

I'm sure you and your husband are swamped with information right now. Hopefully you've been able to sift through a lot of it and are closer to a decision.

While I have no experience with Ross Procedures, I just wanted to add a comment about your "Plan B". In case you end up not moving forward with the Ross, the Medtronic Freestyle -- which I have -- is an excellent option. Like your husband, I'm in my forties, was essentially asymptomatic and was diagnosed with a BAV and a 49mm aneurysm. In May I had an excellent surgical experience and, currently, I'm having a great recovery. While I know my choice of valve (actually root and valve) is not the reason I'm doing so well, it's interesting to see that many of us who have a Freestyle are having very positive experiences.

Best regards to you and your husband as you move forward. Please feel free to reach out by PM if you have additional questions.

Kristine
 
My Ross Procedure

My Ross Procedure

I also had the Ross Procedure when I was 13. Before that I had been restricted from P.E. the whole year of seventh grade, so I was happy to have something done. I went in for surgery Wednesday (June 29th, 2005), left the ICU Thursday morning (after an 11-hour long surgery -- a failed repair attempt was involved), and was leaving the hospital by Saturday. My recovery has been amazing and my only issues have been some small heart-beat issues and blood pressure problems. Those are over with now though. Overall, I think the Ross Procedure is awesome! I'm back to excersizing with no restrictions and am loving it!! My personal surgeon is awesome, I'm not sure how many ross procedures he has done, but he obviously knows how to do them! He was a former surgeon at the Cleveland Clinic -- I know that place is real good. So, all in all, I have had excellent results with my operation! Hope this all helps!! :)
 
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