Bentall Procedure

[Neda]

I am new to this Forum and this is my first post. I will be 44 in September. I have recently been advised by my cardiologist and surgeon that I will require a Bentall Procedure within the next 3 months - I am hoping to get it done as soon as possible (as soon as I complete my root canal therapy). I have an aortic valve that is bicuspid which has severe stenosis. I also have an ascending aortic aneurism up to the arch. Even though I have known that this day will come, now that it has I am quite overwhelmed with it all. I have been advised by my surgeon (and by another surgeon - from a different hopsital - who I went to for a second opinion) that I should go with a mechanical valve (St Jude) given my age and the durability of the mechanical valve. The valve will be attached to a dacron conduit - so it will be one piece.

Is there anyone in this forum who has had the Bentall Procedure and what has your experience been like? - both just after surgery and longer term. My thoughts turn not only to the surgery but to life after surgery and how it will be impacted - I am aware that I will need to be on Warfarin for the rest of my life which I will be able to monitor from home once it is stable. Are the risks with a Bentall Procedure greater than that of valve replacement surgery?

If anyone has any information or insight to give it would be appreciated. I feel I need to be in contact with and hear from people that have been through what I am about to go through to give me the strength I will need.

Neda

 

[Ross]

Hi Neda and welcome to the insane asylum.

Surgery is serious business no matter how you dice it, but when things like these present themselves, we have little choice in the matter. It's do it or die.

I had the Bentall during my aneursym rupture back in 95. I guess you could say a half Bentall because only the bad area of the aorta was replaced, my native valve repaired and resuspended, but I had to do it all again in 2002 when my valve was then replaced. I had many problems as a result of the rupture and suffered kidney and lung damage, but as far as the heart goes, everything was fine. I got a staph infection, which compounded everything and I ended up in the hospital for 40 some days. That is NOT the typical scenario. Most people are only in for 5 to 7 days.

So long as your surgeon has much experience doing this procedure, you should have little trouble. Where the problems are, is when some new guy tries it. You want someone with major experience under their belt. Someone who specializes in surgery of the aorta. It's no more risky then the valve replacement itself. You'll be on bypass until they get everything done.

Your mind is probably being filled with all sorts of nonsense considering the use of anticoagulants. I want you to know, it is not a big deal and it's not as dangerous as they make it out to be, so long as your compliant, you have a good manager and stay within your range. You should look into the anticoagulation forum, active lifestyles forum, and well, the whole site! If you have questions, we'll be more then happy to help you out. Just ask.

 

[Superbob]

Neda,

I had the Bentall's in '05 at age 63, after knowing since my 20s that I would eventually have to have valve surgery. The size of the aneurysm in the ascending aorta -- 5.5 cm -- was a bit of surprise. It had been monitored regularly for a few years, but enlarged rapidly at the end. But the surgery was a blessing -- I am doing well and living an active life.

As for valve choice, I made a list of the pros and cons, read everything I could, listened to advice here, and finally went tissue partly because they are said to last longer (because of body chemistry) in older folks than in young. There is a chance that if it lasts long enough, it will out-live me. Of course, there is a chance I will need a re-do at some point; there are no guarantees. It seemed the best choice for me, everything considered.

I understand your docs recommending going mechanical at your age to reduce the likelihood of future surgery. There are also lots of resources here for helping to deal with the Coumadin issue. (As for taking a drug "for life," there are a few of those I probably will take for the duration -- not Coumadin, though.) At the same time, there also are people your age here who have gone tissue, so you can hear them out, too, if you like. I prefer not to advocate for one choice or the other -- everyone is different. Just take all factors into account and then make what seems to be the best choice for you -- it will be a good choice, I'm sure.

And in any event, yes, there is life after Bentall's -- a good life. So you can look forward to that.

 

[Bill B]

My surgeon never called it Bentall, but I gather that's what I had too, with the conduited St Jude's valve as well. That's what my surgeon recommended. I'm 8 months post-op and feel perfectly fine. It took me about 5 months with 12 weeks of cardiac rehab included before I felt better than pre-op in terms of exercise tolerance. My surgeon made it very clear that I now have NO restrictions at all and can do anything I want including running, weight lifting, etc. at any level I can tolerate. The repair is routinely that good. It's hard to believe that this mechanical valve and Dacron graft are that good, but they are. So, I'm back to doing all my hobbies and chores with zero complaints. During the first few weeks post-op I had some trouble falling asleep, was weak from the surgery and anemia, had a bit of stomach bloating after eating as a residual effect of the anesthesia and surgery, but that was about it. No pain or discomfort, no need for pain meds at any time. Prior to this operation I had never taken meds on a chronic basis, but I'm having no problem with warfarin and a couple of antihypertensives. No negative impact at all and growing positive impact as my heart remodels and functions better since the stenosis was removed.

There is some increase in risk when replacing the ascending aorta in addition to the valve, and surgeons would hold off doing the aorta until it met some criteria, hoping to avoid the aorta replacement altogether. My surgeon argues that doing them together adds so little to the risk versus waiting and perhaps risking dissection and the additional risk of a separate operation, that he thinks they should be done together. Note that unless you have something else wrong with you that increases surgical risk, the risk of AVR or Bentall are quite small anyway, on the order of 1-2 per cent mortality. Here's a paper he co-authored about this issue.

http://billsworkshop.com/Some_AVR_lit/Miller_Aortopathy_of_BAV.pdf

 

[dsouter]

I am turning 41 this October and I had an On-X with Modified Bentall (Surgeon attached the Valve to the Dacron tube) about 13 weeks ago to replace a Homograpgh (Which was an all in one) .
Both surgeries went well and was out in 5-7 days each time.

 

[Gail in Ca]

I also had that procedure, but, same as Bill, Dr. Miller didn't call it that. I had to have my old valve and old separate graft removed and replaced after having endocarditis caused by staph. My surgeon seemed very concerned while talking to me about this 3rd surgery, but explained it well. He ended up creating a valve inside a hemashield graft back-table, just for me. He wanted to give me a 25mm carbomedics valve inside a 30mm graft. I awoke after a long surgery feeling very alert and so thirsty! My recovery went well, I only had a little more pain than my previous 2 surgeries, and also was nauseated for about 3 days after surgery. I went home in 6 days, to start walking as my rehab. It went well, I am now 16 mos post op and my heart feels great. That bigger valve was just the thing for me. My surgeon said I would feel better than I had in years, and he was so right! I have always considered myself a healthy person, exercise, eat right, play music! I think that has been the key to my surgery successes, oh, yeah, besides the fact that my surgeon is one of the best in the country/world! I was 54 for this last surgery.

 

[Neda]

Thanks for the feed back and your personal stories. It is reassuring to hear that there is life after a Bentall. The doctors I have spoken to both have said to me, when asked about long term survival after a Bentall, that there is no reason why my survival should be any different to that of any other person of my age.

As to the surgical experience of my surgeon, I have made enquiries and feel confident that he has lots of experience in surgery of the aorta. So that gives me some comfort (although to be honest the anxiety is still there).

Ross, is what you had in 2002 a Bentall - did your surgeon remove the 1995 aortic graft as well and replace them both with a valve and graft in one piece? This leads me to the question of whether once a Bentall has been done, say if the valve fails or sticks or something goes wrong with the graft, can either issue be attended to separately or does the whole thing need to be replaced?

Bill, thanks for the paper. Makes me wonder how far up the aorta an aneurism can develop even after the aneurism is fixed (ie having had surgery replacing the aorta up to the arch - does this mean an increased risk of developing an aneurism of the other parts of the aorta .. say the descending?). Has anyone heard of any instances of this?

A couple of you mentioned endocarditis and/or staph infection. When did these occur - were they shortly after surgery or some time after? There are so many things to absorb at this point.

 

[Lynlw]

Thanks for the feed back and your personal stories. It is reassuring to hear that there is life after a Bentall. The doctors I have spoken to both have said to me, when asked about long term survival after a Bentall, that there is no reason why my survival should be any different to that of any other person of my age.

As to the surgical experience of my surgeon, I have made enquiries and feel confident that he has lots of experience in surgery of the aorta. So that gives me some comfort (although to be honest the anxiety is still there).

Ross, is what you had in 2002 a Bentall - did your surgeon remove the 1995 aortic graft as well and replace them both with a valve and graft in one piece? This leads me to the question of whether once a Bentall has been done, say if the valve fails or sticks or something goes wrong with the graft, can either issue be attended to separately or does the whole thing need to be replaced?

Bill, thanks for the paper. Makes me wonder how far up the aorta an aneurism can develop even after the aneurism is fixed (ie having had surgery replacing the aorta up to the arch - does this mean an increased risk of developing an aneurism of the other parts of the aorta .. say the descending?). Has anyone heard of any instances of this?

A couple of you mentioned endocarditis and/or staph infection. When did these occur - were they shortly after surgery or some time after? There are so many things to absorb at this point.

I don't know if this helps with your question about future surgeries IF something goes wrong, but my son has his valve and conduit on the pulmonary side, because of his history, where his heart is ect. instead of the usual valve then graft/conduit he has a section of dacron, then his valve (bovine they usually won't use mechanical on the right side) then he has another section of conduit. He had that built in the OR in 05. In 07 the first section of conduit was blocked and needed replaced. They ended up just replacing that section of conduit since his valve and the far section of dacron were in perfect shape.

 

[Demonic]

I can fully sympathise with your situation.

I am 44 and I had an AVR in April 2008 (mechanical) due to severe regurgitation and have now been referred again for a dilated aorta which has just hit the magical 5cm mark. It came as a bit of a surprise to be needing this so soon after my AVR (2 years). It seems logical not to replace the ascending aorta if it didn't need it at the time but also seems illogical if it was already dilated and the prognosis afterwards is so positive.

I have yet to see my cardiac surgeon but standard practice seems to be a Bentall procedure. However I have been in contact with an engineer name Tal Golesworthy and he has forwarded my enquiry to a Professor John Pepper. Tal invented a "wrap" (for want of a better word) for his aorta which has now passed clinical trials in the UK. Details can be found at www.exstent.com. I am going to see if I am suitable for this. I have not having been diagnosed with Marfan Syndrome. The benefits of a 2 hour operation as opposed to a 5-7 hour one, not having to go on bypass etc. seem to make the difference worth it in my eyes.

If not it will be Bentall for me I guess. I don't know if they'll replace my existing mechanical valve with a one-piece valve and graft or just put a graft in. I guess it will depend on the state of my aorta near the valve.

As for being on Warfarin for life I can only echo Ross's sentiments. I have not found it to be a major issue. I quite enjoy the regular trips to chat with the nurse and I get to leave work a little early as well. I think the longest that I achieved between INR tests was 12 weeks. I don't know if it's standard practice in the US but over in the UK you get longer between tests if you stay in your therapeutic range. We don't seem to have home testing in the UK yet but I guess it will come.

I started to exercise and cleaned up my diet about a year ago after I stepped on a scale and found out that I was 260lbs. I ahve now lost 70lbs in weight and I am in the gym regularly. I don't lift heavy but I am there 4-5 times a week so an active life after OHS is a reality. I am now at the lowest weight I have been since I was 19 and I'm a lot fitter and healthier (apart from the obvious heart issue and some arthritis which I've had for many years).

The AVR surgery was a relative breeze. It was easier than my hip replacement that I had in 2000. I was expecting to feel a lot worse but I was out of hospital within 6 days. In fact I was getting pretty bored at having to be in there that long but my INR needed to be between 2.0 and 3.0 before they'd discharge me. I was on a heparin pump for what seemed like ages and would eagerly await my INR results every morning. As soon as I hit my range they let me go home.

You'll feel quite weak for a while afterwards. Don't overdo it but don't use it as an excuse to sit around either. I did that for a while and I now look back on it as wasted time where I could have been doing so much more.

From the tone of your post you seem to be coping far better than I did when I first got the news that I needed surgery. Try to remain positive and I'm sure you'll be out the other side of this wondering what all the fuss was about.

My apologies for waffling on (and on). This site has been a trememndous help to me in the last few weeks and it helps to read other people's positive stories so I thought I'd pop mine in here.

Good luck with your surgery.

 

[Neda]

Thanks for that Demonic. The Exstent makes sense. I would be interested to know what your surgeon advises you - whether they recommend replacing your existing mechanical valve with a one piece valve/graft.

 

[Ross]

Ross, is what you had in 2002 a Bentall - did your surgeon remove the 1995 aortic graft as well and replace them both with a valve and graft in one piece? This leads me to the question of whether once a Bentall has been done, say if the valve fails or sticks or something goes wrong with the graft, can either issue be attended to separately or does the whole thing need to be replaced?

Yes he did. He didn't have too, but as he said, he'd rather not have any extra sewn joints to possibly leak. He wanted the least amount of joints possible. It could done, valve, then conduit, then attachment of aorta and such, but he chose not to do that. Nothing will ever go wrong with the graft and there is very little chance of mechanical failure of the valve unless a clot would form on it. With dilegence in anticoagulation, that's not very likely to happen.

I got the staph infection off of an IV line right after surgery. They brought in an infectious disease doc that threw the book and everything he could think of, into me, to keep it from setting up shop on the valve and graft. I was lucky. It worked, but I was so sick that I really didn't think I was going to make it out.

 

[Maryka]

Good luck with all surgeries, whatever they are called! Most of us on this forum have had similar surgery and are here to give support and encouragement!

 

[Bill B]

Bill, thanks for the paper. Makes me wonder how far up the aorta an aneurism can develop even after the aneurism is fixed (ie having had surgery replacing the aorta up to the arch - does this mean an increased risk of developing an aneurism of the other parts of the aorta .. say the descending?). Has anyone heard of any instances of this?

The point of the article is that there are patterns and the whole aorta needs to be examined. Dr. Miller said he would not know exactly how much aorta he would need to replace until he got in there and examined the tissue quality directly. I think it's unlikely that areas of aneurym develop at different rates.

 

[Gail in Ca]

Endocarditis got me 8.5yrs after my 2nd surgery. After having 3 kinds of antibiotics for 6 wks IV, I then needed AVR, with new graft, and MV repair. My surgeon moved the valve up on the aorta in order to avoid that bad tissue around the previous mech valve. My surgery involved the coronary arteries this time, for my other 2 surgeries, it did not.
Getting endocarditis is rare, I think my infectious disease doc said 1-2%, and then getting it again after having had it once only increases the risk by 1%. Mine was caused by a staph that lives on the skin of 30% of the population, still don't know how I got it, but it is horrible to go through, worse than my 3rd surgery!

 

[Lynlw]

The point of the article is that there are patterns and the whole aorta needs to be examined. Dr. Miller said he would not know exactly how much aorta he would need to replace until he got in there and examined the tissue quality directly. I think it's unlikely that areas of aneurym develop at different rates.

You can have an annuerysm, any where on the aorta. It is possible (especially if you have a conncetive tissue disease) to have one annueysm replaced and another annuerysm develope some where else along the aorta, including the abdominal aorta if your first annuerysm was in the thoriacic Aorta

 

[Bill B]

You can have an annuerysm, any where on the aorta. It is possible (especially if you have a conncetive tissue disease) to have one annueysm replaced and another annuerysm develope some where else along the aorta, including the abdominal aorta if your first annuerysm was in the thoriacic Aorta

Hi Lyn: My impression is that descending aortic aneurysms are rare in BAV. You'd think we'd be having regular CAT scans or MRI if that were not the case. Dr. Miller expressed no concern about future aneurysms to me. I think he believes his approach, including areas outside the root and ascending aorta, takes care of the diseased areas.

 

[Lynlw]

Hi Lyn: My impression is that descending aortic aneurysms are rare in BAV. You'd think we'd be having regular CAT scans or MRI if that were not the case. Dr. Miller expressed no concern about future aneurysms to me. I think he believes his approach, including areas outside the root and ascending aorta, takes care of the diseased areas.

It might be rare, but happens. I believe Ross right now is watching an Abdominal AA. My Mom (no Aortic valve problems) has surgery for an abdominal Annuerysm about 10 years ago, and had a 3xs CabG about 5, I know they checked her Aorta, since she had the history of the AAA.

 

[Lynlw]

It might be rare, but happens. I believe Ross right now is watching an Abdominal AA. My Mom (no Aortic valve problems) has surgery for an abdominal Annuerysm about 10 years ago, and had a 3xs CabG about 5, I know they checked her Aorta, since she had the history of the AAA.

PS I remember when I worked in a Blood bank we had REDO annuerysms on the OR schedual fairly often

 

[Bill B]

AAA seems rare with BAV, more common with Marfans, Turner's and coarctation (some of whom are BAV). I'll worry about other things.

 

[aussigal]

Hi Neda...
I had the Bentalls op in April 2006...had a few complications at the time of the op but I have been good as new ever since...life is perfectly normal for me and unless you saw my scar or saw me swallow 4 pills at night you would never know there was anything different about me or that I had a nifty little mechanical valve instead of my native valve and aorta. I barely notice it myself and almost never think about it...even when I go in monthly for my INR test it doesnt remind me that I am here because of my mechanical heartvalve, I see it as a chance to chat with my lovely Blood Nurse...

I wish you all the very best...

I am not on here as often as I should be or used to be... but am always available through email/personal messages...