Root dilation after Ross

[Ross-n-97]

Hello. I am a newbee to this forum. 9 years ago (june '97) I had a Ross procedure. It was at Jewish Hospital in Louisville Ky. The surgeon did an excellent job as I have had absolutely no problems for 9 years! However, my aortic root has become dilated over the past 9 years (apparently common with the Ross). It is at 4.8. Now they are watching it every 6 months instead of my usual year. You hear 5 is the magic number for marfan's (which I am not) and 5.5 for non marfans. My cardio and my surgeon don't seem to be terribly concerned at this point although my cardio says around 5 we need to look at the options. I have only been married for 2 years and I have a 11 month old baby! I don't want to leave him without a daddy and maybe I am overreacting but these guys are much more at peace than I am. Anyone have any thoughts??

 

[Karlynn]

Welcome! I'm glad you found us. I'm not sure, but you might be our longest "Ross-er" at 9 years. Sorry to hear about your root dilation. I'm not a Ross expert, nor even an aortic valve or root expert, but I'm pretty sure that you are going to be reading from our members that 4.8 makes them very uneasy. We have at least one member who's had a disection before they got to 5. I had not heard of the Marfan's and non-Marfan's standards. I would certainly not be willing to wait until 5.5.

You say they are watching you every 6 months. What was your last measurement prior to the 4.8 and when was it?

 

[Ross-n-97]

I think it was about 4.6 and it was a year prior to my 4.8 measurement. I will no wait until 5.5 because I just can't afford to. As I said I am a relatively new father. Anyway, my Ross has performed beautifully and the dilation is the only major problem I face. I have never smoked and don't drink. My overall health is very good. Just don't know if I want to toy with the "5" mark or not but these guys sure seem pretty confident.

 

[geebee]

Welcome.

If you feel like you want surgery before the measurement gets to 5 (which will probably be most of the thoughts here), it looks like it will be within a year. I would think you should just determine the best time for you in the next year to take the time off for surgery and have the doctors work with your schedule. Obviously surgery will be needed so it should be on your schedule.

 

[Karlynn]

Gina has a good point. Better to arrange it around your schedule while it's not an emergency situation, than go in for a 6 mo. check and find you have to have it done ASAP and scramble to put all your ducks in a row.

 

[Ross-n-97]

My surgeon mentioned inserting a dacron sleeve to fix the issue. Is that an OHS procedure or is there any new methods for doing this without getting split open again??

 

[Arlyss]

There are other conditions besides Marfans that are now understood to have similarly weak connective tissue of the aorta. I am assuming you are quite young and since you had your surgery 9 years ago. I am wondering if your own aortic valve was bicuspid?

Size is not the only criteria for determining the timing of aortic surgery, but it is an important one. You will want to know exactly where your aneurysm is - the term aortic root is used rather loosely at times. Assuming the root in your aortic position now is really what was your pulmonary root, I would have questions about applying statistics used for the aorta to that tissue.

Centers and surgeons will offer surgery based on their results and experience - risk of surgery versus risk of dissection or rupture. The numbers you are being given are what are used for guidelines where you have had your consult. One thing that confuses me is that the Ross procedure is not used in Marfan patients, so using Marfan numbers as a guideline seems to mix apples and oranges if they are talking about the aortic root. A Marfan patient will never have their own pulmonary root in the aortic position.

This may be confusing, but perhaps the bottom line is that Ross redo operations need their own set of considerations and criteria - it is not the same thing as someone with an aneurysm who has never had surgery before. Do you have access to physicians who deal with a lot of Ross redo operations? And if it is your ascending aorta that also is enlarged, do they have experience with surgery of the ascending aorta?

For detail about replacing the aorta with Dacron, which is open heart surgery, you might check out www.cedars-sinai.edu/aorta

Best wishes,
Arlyss

 

[Ross-n-97]

The guy that did the Ross on me has done gads of reops. Here is the link. http://www.ucsamd.com/Index.asp?PageID=1 Go there and look at physician profiles. His name is Erle Austin. Trust me, I did my homework on the guy and he is the real deal. Incidently, Cleveland clinc uses the same measurements for surgery recommendation as I listed. At least, that is what is listed in their heart forum.

 

[Kate]

Hi Ross in 97!
I had my 4.8cm aneurysm corrected at the Cleveland Clinic just under one year ago, partially because I wasn't comfortable with even a 5% risk of dissection when the risk of operation was under 1% for someone of my age and good health. However, the other reason I wanted it done before the magic 5cm size (and the reason the Cleveland Clinic agreed it made sense) is because of my overall body size. Like most things, aneurysm size is relative and, in my 5'3" body, a 4.8cm aneurysm was huge, whereas for a 6'2" man, it would have still been on the smallish size (though still capable of disecting). Now, I don't know how big you are, but I'd definitely take that into account when making your decision about when to operate. Best of luck! Kate

 

[Karlynn]

We understand that the "magical" number is 5. But we also know that there are people who's have blown before reaching 5. Ross, our moderator, is one. I'm sure there are many factors that are involved. A person's physical size is one of them. Basically it's a guessing game and you just hope you make the right choice. Some have theirs blow at 4.8, others go in and find they are at a 6 and everyone is shocked they're still walking around (although they are rushed into surgery).

If you were a 4.6 a year before. Then you could maybe try and guess that in a year, you could be at a 5.0 and figure that's when you'll do the surgery. Or it could be growing more slowly, or more quickly. Maybe you'll go in in 6 months and it will still be 4.8, or maybe it will be 5.0. I'd still want to make the choice that affords me the most control in how and when, and I guess that's saying it would be planning to have it done in the next 6 months.

If it sounds like I'm pushing you into surgery, it's just that I'd like you to have the control. My Mom died from a disected aortic aneurysm. She didn't know she had it, so she had no control. A Surgeon telling you they don't operate until it's at 5.0 is just telling you that they find that most people can make it to 5.0. An educated guess based on statistical information, but still a guess that doesn't have a 100% statistical probability. And like Rachell wrote - they aren't the ones with it in their chests.

 

[Bryan B]

Ross-n-97,

Do you know if your surgeon replaced your aortic valve AND ROOT with your pulmonary valve AND ROOT? I know that at some point in the past they did not do this, and after statistics showed that aortic root dilation was a common cause of reops they started taking the pulmonary valve AND ROOT for the autograft. I can't remember when they made this change to the procedure, but for some reason I want to think it was in the late 90's.

As long as your autograft valve is still in good shape I would think that reinforcing your aortic root with a dacron sleeve would solve the problem. Unfortunately I believe they will have to go through sternum again to make the repair. As someone who has had a RP, root dilation is my main concern. So far so good for me but it's only been 2 and a half years, so it will remain a concern of mine indefinitely. At my 1st annual checkup my root showed mild dilation at 3.5. Interestingly enough at my 2nd annual checkup they measured it at 3.3.

Just a FYI...I did not have a BAV, I had an unclosed VSD. The VSD became smaller over time but did not close. Because the VSD became smaller it started causing a "suction" effect, and this "suction" caused one of my aortic leaflets to prolapse which caused AI. I still wasn't considered for surgery until I contracted endocarditis from chronic bronchitis (according to the infectious disease doc). The endocarditis caused enough damage to my aortic leaflets to cause my AI to go from moderate to severe, thus the surgery.

 

[Ross-n-97]

You are exaclty right Bryan. My Ross was done before the data was solid about the root. All I had done was the valve job. They do indeed replace the root with the valve today. The dacron sleeve is exactly the procedure we are looking at. I figured that through the sternum was the only wat for them to do it. But hey, it never hopes to hope!! At any rate, this procedure is far less intense as the Ross itself. I just hate surgery! LOL.

 

[Tom F.]

Just FYI, there is a doctor at the University of Chicago hospital that is something of an expert is Ross fixes. His name starts with "J" and is very long, go their website and you can probably find him. Good luck.

 

[teri]

Hi! Just wanted you to know that my husband just had a Ross performed last Monday in Indianapolis by Dr. John W. Brown at Methodist Hospital. He also does surgeries at Riley Children's Hospital here in Indy. He learned the Ross from Dr. Stelzer and now teaches the Ross to others. Since Indy is fairly close to your hometown, I thought you might like to at least know Dr. Brown exists and is extremely competent. Might be worth a trip for you to come and talk with him. Good luck to you!

 

[sylviayasgur]

hi ross n 97,
welcome! good to have you here (well, not good that you need to be here, but welcome to this wonderful place... you know what i mean...)

just looked up joey's hospital records and they say that dr. stelzer found "considerable post-stenotic aortic dilation (4.5cm)...extensive tailoring was required....distal aortic suture line..constructed with continuous 4-0 prolene using strip of teflon felt for reinforcement.. this suture line brought around to the front... excess aortic tissue was excised to get rid of the dilation"...

i remember dr. stelzer explaining to us_ at the consult_ what he would do with the dilation and tha aortic root.... he seemed like a seamstress who was prepared to match fabrics perfectly.

you are so fortunate that you have gotten 9 years out of your ross. you are the longest one here. joey is going on 5 years (in 15 days!!!) and we are thrilled.

i imagine that this is similar to what your surgeon would be doing, no?
wishing you the best and please keep us posted,
sylvia

 

[StretchL]

i remember dr. stelzer explaining to us_ at the consult_ what he would do with the dilation and tha aortic root.... he seemed like a seamstress who was prepared to match fabrics perfectly.

LOL... Funny you say that... at one point during our consultation this weekend, I asked him if he's also the "go to" guy in his house when a button needs to be sewn on or a hem line repaired.

 

[Ross-n-97]

September 22

September 22

Well, on Sept 22nd I go to speak with my surgeon to start the process of getting this root taken care of. The aortic valve (my pulmonary) is doing perfectly. The donor valve (now in the pulmonary position) is slightly stenotic. Not bad though. The main focus will be the dilated root. At any rate, I would say that the Ross is a great procedure. I have been on 0 meds for nine years and have had no other complications. Too bad the data on the root wasn't clear at that time! Anyway, I can recommend the Ross to any young person facing BAV if Dr. Erle Austin at Jewish Hospital in Louisville, KY does it! He is the man in my book for the Ross. Wish me luck with the root!