Reinforced Aorta

[Bean Counter]

Hello Everyone-

I am a 37 y/o male that will be having BAV replacement in June. This was first detected in November 2008 as a doctor detected a murmur and thought we should look further. I have been training for marathons that past 10 years and was putting 80-100 miles per week over the last 2 years. The Cardiologist told me I could keep training for marathons, but he wanted me evaluate me every 6 months. 2 weeks before the Chicago marathon last year, he saw that my aorta was dialated (4.3) on an echo and advised me to not run the marathon. He did allow me to keep running, but said I had to limit myself to 50 miles a week.

Now that I am at the point of getting my valve replaced, there is one item that 2 surgeons have differing opinions on. They both agree that the aorta is fine and does not need to be replaced. One of them feels that it would not be a bad idea to reinforce is with a dacron strip to prevent it from enlarging any further in the future. The other surgeon thinks that this is not necessary and feel it could be susceptible (sp?) to infection.

I do not see a lot of material out there on this and wanted to see if anybody had any opinions?

 

[Lily]

Welcome. You will find a lot of opinions here! And there still seem to be different medical theories in regard to causes and developments of dialated aortas. And you will find a lot of varying member experiences, even though many here may have a somewhat similar diagnosis. As you may already know, however, there seem to be degrees of severity of a bicuspid disorder diagnosis. And there are some here who have suffered through, and barely survived, aortic dissections. They would not wish that on anyone else.

Personally, I was never an athlete. I did give birth to two children and that evidently can do a number on a woman with a true bicuspid valve. But the three surgeons I consulted with had varying opinions about my aorta as well. As it turned out for me, I didn't need (at least yet anyway) work on my ascending aorta. As I recall, one test concluded it was dialated to 4.1. But, as I chose a tissue valve, and knowing resurgery could be inevitable, I decided I'd get that work on my aorta done if and when it was needed. It's been a good call for me. My aorta is not considered dialated anymore. But we're all very different. Your needs may be very different also. You'll find that what works for one here may not work for another.

Hope this has been helpful. Best wishes. Post again.

I'm adding an edit here. This is only my opinion and is based on an instinct I had several years ago. I felt, seven years ago, that (as a person born with a bicuspid valve) if I actually did have some type of significant "connective tissue" issues, as some with bicuspid valves evidently do, that receiving a tissue valve might be easier on my heart, my aorta, etcetera, than a mechanical valve. That was my thinking, my instinct. I have no idea if it's accurate or not. I have read of some members here, and I'm glad others referenced this specifically, that have had to have resurgeries for aorta issues after valve replacement. It would be a frightening situation to be in. I've never paid close attention to whether there were more members suffering from subsequent aneurysm developments who'd received tissue valves or mechanical valves. Furthermore, having chosen a tissue valve that evidently is not going to last as long as I would have hoped, this is also a difficult situation to be in. And I don't know if you've ever researched valvular strands or pannus growth. There seem to be so many unknowns. I know that getting a new and properly functioning valve was practically like a temporary resurrection for me. I hope you will feel so well also, with whatever valve and surgery you choose. Hope these further details are helpful in some way. Again, best wishes.

 

[Ross]

May I ask who these surgeons are? I would make darn sure that either or both of them have many many of these types of surgeries under their belts.

 

[Bean Counter]

Dr McCarthy out of Northwestern and Dr. Ramman out of University of Chicago. Both have done this procedure numerous times and both come highly recommended.

 

[Ross]

Ok, lets go one step further, what was McCarthy's suggestion? McCarthy saved my life, so I can vouch for him.

 

[COLLEEN S]

Reinforcing means introducing a foreign material into your body. Any time you do this you are risking infection, as you are when you have any surgical procedure. I would ask the surgeons if you would be better off with or without the procedure and go from there.

 

[Karonnie]

That sounds like a difficult decision when you have two varying opinions from qualified people. Did either of them validate their opionions with plain reasoning you could feel comfortable with or were you too shocked to ask! lol

Just curious if you have an ascending aortic aneursym (having a BAV) or if it's dilated in another area and what yr choice of replacement valve is? Maybe these details could be part of the reasoning behind the two varying opinions. Or maybe it is it close to the arch if it is in the ascending? Have you choosen a tissue valve due to your sport?

Using infection as a reason also seems odd. Other than the time you were open during surgery increasing the level - but you're an otherwise healthy young man if you're able to complete marathons surely. And post op it wouldn't either as I thought prophalxysis antibiotics (to guard against infectious endo) were only required for the AVR not if it were only a replacement of the Aorta (?) so this surely isn't the reasoning?

 

[skeptic49]

You seem to be in a conundrum. Surgical guidelines call for replacing a dilated aorta at larger diameters than you currently have at age 37 (some studies I've read recommend replacement in BAV patients at 4.5...however the ACC guidelines state:

Surgery to repair or replace the ascending aorta in a patient with a BAV is recommended when the ascending aorta diameter is 5.0 cm or more or when there is progressive dilatation at a rate greater than or equal to 5 mm per year. (112) (Level of Evidence: B)...In BAV disease, there is no consensus regarding the specific diameter of the ascending aorta for which replacement is indicated, but greater than or equal to 5 cm has been suggested by some (112). Whether aortic root replacement or wrapping is optimal in such patients is a matter of debate; results of AVR in CHD have an acceptable medium-term result (342).

No one can know what will happen in the future, but your aorta may dilate further as you age which if that happens would mean additional surgery.

Jim

 

[tobagotwo]

Please bear with me, as this turned out to be a rather strong and unvarnished opinion...

If it were myself, I would go for the reinforcement without hesitation. You do not want to be on this forum a year and a half from now, telling us about how you have to have your chest reopened because your aorta has expanded further (which it very likely will, in my nonprofessional opinion). You can go through years of constant checks of your aorta's size, living with it gnawing at you, researching the web, asking everyone you can whether it's at a dangerous size or not, worrying whether the cardiologist is making you wait too long, wondering if it will hold out until you do get the surgery to get it fixed, and not even being able to run or train once it gets to a certain stage (you're already on restriction - that won't go away just by replacing the valve). Or you can get it taken care of now, when you have to be opened up anyway. And go back to running and living your life.

My own observations on the site are that aortas that are left alone because they "don't look that bad," or "don't need anything to be done yet" usually bring their owners to grief in just a few months or years. Something about readjusting the pressures in the heart with valve surgery, or a tiny injury at the edge of the surgical site that begins a possibly dissecting rip, and the whole, gut-wrenching, expansion-and-guessing cycle begins. Even if it doesn't go quickly, there are still years of watching and waiting.

It's extraordinarily rare that someone gets an infection from the dacron velour used to replace or reinforce the aorta. I can't remember one post that claimed an infection from the dacron sleeve or patch. The surgeon may be required to warn you of the possibility of infection from that, but it's hardly a looming threat that would keep me from being as fully functional as possible after surgery. Ask the surgeon how often a dacron-caused infection has resulted from operations he has performed.

My vote is, if you've got to have the surgery, do it all, and do it right - as permanently as possible.

Best wishes,

 

[Dale 1]

I had a Bentall procedure six months ago -- BAV replacement (bovine tissue valve), and root aorta replacement and aortic grafting. Both the aortic root and ascending aorta were replaced by a material that was described by my surgeon as "something like Goretex." So I'm a little confused about the claim that reinforcing the aorta could lead to infection. Any of the procedures that we're all either looking forward to (I'm joking) or have been through carry a risk of infection, but in general surgeons take defensive measures to avoid it happening.

And I agree with Bob H. If I were you, I'd go for the aortic reinforcement, if I weren't yet ready for repair or replacement.

Dale

 

[Bean Counter]

Thanks for the good information and opinions. Our situation is that we have 2 correct opinions, but one is better than that other.

Dr. McCarthy is the one that is strongly against touching the aorta as he believes it is fine as is and will not worsen when I return to running. The other surgeon is that also said it is "fine for now". When we pressed about being proactive and replacing it while we were in there, he threw out the suggestion of adding Dacon strips to reinforce it. We have done some internet research out there and found a few studies that concluded that this is a good procedure and there were not any long term complications in the subjects (102 of then) that were studied. We have 2 friends that work in an operating room (one is a nurse and one is a surgical tech) and their opinion is that the Dacon stip is not that big of a deal. It is kind of like adding a patch to a bike tire.

We are going to set up a surgery date for mid June to have both procedures done. My Cardilogist is going some further research and we are going to get an opinion from a 3rd surgeon...basically to validate that what we are doing is safe.

 

[surfsparky]

Hi Bean Counter,

I echo Bob's thoughts. What he has mentioned is exactly what we are going through. Valve replacement (Ross procedure) done 7 years ago and now Chris' aortic root has been slowly dilating causing us concern. There have been a number of posts on here and on the rossprocedure forum where members who have had BAV have had a dilation of the aoric root/ascending aorta.

Sounds like you're doing lots of research which is really wise...and I know you'll make the best decision for you.

Cheers, Yolanda

 

[Philip B]

Differing Opinions - Reinforcement

Differing Opinions - Reinforcement

You have an interesting situation with two doctors and two opinions. How about visiting with the one you choose about a compromise.

A solution might be to simply ask to have the condition of your aorta evaluated once they get in to replace the valve. If the tissue doesn't look like it needs reinforcement, your surgeon can skip the patch job. Obviously, should the tissue show the potential for future problems, the surgeon can do what needs to be done to reinforce it.

My surgeon knew exactly what the tissue in my aortic aneuryism would look like before going in. I suspect decent surgeons know the difference in what healthy tissue and tissue that is prone to problems looks like.

Of course, there's nothing wrong with playing it safe in an effort to avoid potential future issues with a reinforcement job.

-Philip

 

[MrP]

Symptomatic aortic insufficiency or stenosis may be the primary indication for operation. When replacing or repairing a diseased valve a decision must be made regarding the moderately dilated aorta. Michel et al 89 reported that 25% of patients undergoing surgery for aortic insufficiency who had ascending aortic diameters greater than 4 cm required subsequent operation for aortic replacement. Prenger et al 90 reported a 27% incidence of aortic dissection following aortic valve replacement in patients with aortic diameters greater than 5 cm. Based on these findings it is recommended that aortic diameters of 4 to 5 cm be dealt with at the time of aortic valve surgery. Further incentive for earlier surgery is the improved possibility of native valve preservation.

http://cardiacsurgery.ctsnetbooks.o...neurysms_Associated_with_Aortic_Valve_Disease

 

[MrP]

I've read wrapping instead of replacing the diseased aorta is common in very old patients (>90 yrs) but not a good idea for younger patients. It is about as effective as wrapping a weakened bicycle tire tube with Duct tape....won't last. I don't understand why your surgeon even suggested this.

 

[MrP]

My understanding is that your cardiologist measured your ascending aorta at 4.3cm via echo test. Margin of error is high for echo vs. MRI or CT scan. Prior to my surgery, my echo showed a diameter of 4.5cm when in fact a more accurate 64 slice CT scan showed it was dilatated at 5.1cm. Did you have a CT or MRI or did I overlook this in this post or another?

 

[ALCapshaw2]

I concur with Bill B's (non-professional) suggestion to take care of Both Issues in One Surgery.

Sometime ago I was moved by a member's failed Valve Replacement where the stitching failed to hold in what turned out to be a Connective Tissue Disorder (CTD). BAV is a common symptom of CTD. We have had a few other members who did NOT address their Aorta's who came back in a relatively short time with an Aneurism that needed to be repaired / replaced, one just recently. Because of these member's experiences, I always advise BAV patients to find a surgeon with Lots of Experience dealing with BAV and who KNOWS how to recognize and treat Connective Tissue Disorders.

That said, Dr. McCarthy came from the Cleveland Clinic and as Ross related, saved his life when his aorta disected.

The head of the Aorta Surgery Group at Cleveland Clinic is Dr. Svensson so he may be a good surgeon to seek a 3rd option from. (I know, it's not proper to end a sentence with a propositon).

The top Aorta Surgeon at the Mayo Clinic is Dr. Sundt who learned the trade under Dr. Nicholas Kouchoukas in Springfield, MO.

My NON-professional recommendation would be to seek yet another opinion for a knowledgable surgeon with an eye toward addressing the Aorta Issue during the VR surgery.

'AL Capshaw'

 

[james]

I chose the wrap myself. FWIW my surgeon runs 2:30 marathons and lifts cars with his pinkie.

 

[cbdheartman]

Wow. This is a tough situation. I don't know how anyone can say that your aortic dilation isn't a sign of BAV connective tissue disorder. That is, the fact that your aorta is dilated would suggest to this layman that you have a connective tissue disorder and that at some point (barring the unforeseen dissection or rupture) you will have to have your aorta replaced. I would highly suggest third opinion with the cardiologist Dr. Dietz at Hopkins. He is one of the foremost experts on connective tissue disorders and takes a very conservative or aggressive approach, depending on your point of view, with regards to when surgical repair of the aorta is needed.

My personal opinion having tortured this board with all my questions about this (not saying you are torturing the board, I was!) is that I would go ahead and have a full repair and valve replacement at the same time. I don't see why you would wait. You are going to play a waiting game with your aortic tissue which seems -- again from this layman's perspective -- to be showing signs of connective tissue disorder. It could remain stable for years at 4.3 (if it is even 4.3) or next year it could be 4.8 and then 5.0 the next year (though if it grew from 4.3 to 4.8 you'd probably be facing surgery anyway).

I'd get the peace of mind of having the darn thing repaired now. Also, despite what the docs say -- I had a family friend cardiac surgeon say I could go out and run a marathon no problem when my aortic root was dilated to about 5.0 cm last spring -- I would avoid heavy running of that nature both pre and even post repair surgery because of the possibilities of dilation further up the aorta.

I am more than happy to talk about this over the phone. I don't envy your hard decisions.

 

[sylviayasgur]

hi beancounter,
welcome to this site. this is a big dilemna. joey had his ross procedure done about 9 years ago. in his reports it states: "resection and repair of ascending aortic dilation-lateral aortorrhaphy"...... "using a strip of teflon felt for reinforcement- measuring around a 25mm sizer....suture line was brought around to the front and then the excess aortic tissue was excised to get rid of dilated area.... ".
i imagine most surgeons like to have a back-up plan, just incase they find something unexpected once in there. dr. stelzer made it clear that the films,etc. show a lot in detail, but sometimes you don't really know 100% until you get in the chest cavity.
i suggest you do get another opinion, even though dr. mccarthy is, from what i've heard, a brilliant surgeon. every surgeon has their own style and way of doing things that have worked for them in the past. these are all things to consider.
good luck and please let us know how this all goes for you.
be well,
sylvia