49.5 Year Old with Aortic Regurgitation deciding on a valve and hospital

[Guest]

This site is fantastic. I've taken some time to read the various perspectives and would greatly appreciate the collective experience and knowledge on my case. I apologize for the length of this post in advance. At my annual physical, my doctor detected a murmur which turned out to be aortic regurgitation. I’m otherwise very healthy. The left ventricle has increased its size, but not so much that heart can't resume normal function with a functional aortic valve. After my TEE, it was determined that I have a prolapsed leaflet that one of my surgeons said is 90% repairable. He also said that the repair could last from 5 years to life. I've done some research on the repair (Commissural Annuloplasty with some form of tri-leaflet plication, the surgeon compared it to reefing a sail) and the data support his percentages. I'm now trying to evaluate which hospital (both Boston based), Brigham and women's ranked by US News as #4 nationally and Lahey, which has a really good surgeon and well regarded valve replacement clinic. Also, I need to determine what valve to go with in the case I'm hit with the 10% of repair failure. I know there are some strong opinions out there and I welcome them all. Here are my thoughts:

Mechanical Valve
On-X seems to have the lowest required INR and good outcomes - Brigham would use On-x and Lahey would only use Top Hat
Mechanical valve requires only one Open Heart Surgery and would last for life.
Life on Coumadin – One surgeon said that my daily one whiskey (or two) would have to go due to potential liver impact. He said that going on Coumadin while young generally produced excellent adaptation and aortic thrombotic event risk would be very low with the mech valve.

Bio Valve
Lahey would use the Medtronic Freestyle or the Magna Ease (Edwards Lifesciences)
Brigham indicated only a bovine valve
Bio Valve would require another procedure:
- One surgeon indicated that when the initial valve fails, regulations will likely to have changed to allow TAVR in a healthy 65 year old (guess at when the procedure would be required)
- The other surgeon indicated only that current rules would not allow a TAVR in an otherwise healthy 65 year old
The newer valves are lasting significantly longer than the older versions (The Magna Ease lasted over 17 years in patients less than 60 years old in the aortic position and 16 years in the mitral position – evaluated over a 25 year period equivalent to 3,300 valve years (this data is from the company so I view with some cynicism).
The third procedure would definitely be a valve in valve procedure. The TAVRs are improving radically over time and are nearing the durability and hemodynamics of bio valve replacements. In 15 years (or 20 if I’m lucky), they will have improved even further.

Evaluation
Risk of mech valve annual stroke or thrombotic event annually is approx. 1%
Risk of infection (endocarditis) is lower with the mechanical valve than bio valve
Risk of bleeding event is higher with Mechanical valve than with bio valve
There was some mention of neurological issues with Coumadin. I know of two friend’s fathers, both on Coumadin, both had a fall (while walking) with moderate head impact and subsequent intracranial hemorrhage requiring surgery.

Conclusion
All in all, it seems that the annual risks are higher for the mechanical valves. The event risk associated with the bio valves is significant, but less than the cumulative risks for mechanical valves. Open heart surgery scares the daylights out of me. But, so does the risk of stroke and intracranial bleeding. One surgeon said that the bio valve was the way to go, with subsequent TAVRs. The other said that it was 50/50 and a very hard choice. My take was that he viewed the change in regulation to allow for TAVRs was a significant risk.

I’m leaning towards a bio valve and towards Brigham. But, I like the Lahey surgeon a lot. I would also go for the On-X in the case of Mechanical or Magna Ease in the case of bio valve. (We discussed the St. Jude Trifecta and there were some initial problems and not enough history for the surgeon to go with that option). Apologies for the length of the above. Research is how I respond to terror and I’m terrified. Thank you very much in advance for your help. I have my last meeting with my surgeon tomorrow and then I have to decide.

 

[M Red]

For some reason my post came up a Guest instead of me. Maybe I took too long to write it. This from me.

 

[cldlhd]

I was in the same boat as you, a couple yrs younger , 44 when discovered, and different local-outside Philly- but other than that . My bav was in good shape, trace regurgitation, and I had the aneurysm to go with it. I was told I had a 95% chance of repair. I had it done at the University of Pennsylvania and my surgeon was Dr Bavaria. It was a success and he thinks it has a chance to go the distance. My backup was mechanical.

 

[almost_hectic]

Im the proud owner of a new OnX aortic valve and an aortic graft at 44. To me it sounds like the the incidents of those on Coumadin you mention are likely not the sort of situation you'd find yourself in these days. Monitoring is far more advanced and very accurate, pulse doses are far lower to where bleeding really isn't that big of a scare. If open heart surgery scares the daylight savings out of you why potentially have one or even two more?! TAVR is not the miracle doctors wish it were yet. Besides that even if it were you can only do a valve in valve once, what happens if you wear out more than one tissue valve? That's a roll of the dice in my opinion. There's no guarantee how long a tissue valve will last. A new OnX should last you forever.

I wonder, with TAVR and those metal cages that expand in place... Do those require you to be on Coumadin too? Anyone know?... Seems likely

 

[cldlhd]

I just saw a commercial for TAVR this morning.

 

[dick0236]

I have no experience with multiple surgeries and have personally known only one friend who had. "Joe" had a tissue valve implanted in his early 40s, a re-op in his early 50s to a mechanical valve that lasted until his death in his mid 80s....of complications from endocarditis(sp) caused by new dental implants coupled with cancer and diabetes and while the valve was still working normally his heart was overwhelmed. I also have three current friends and neighbors(including my daughter-in-laws father) who have recently had tissue valves implanted.......but they are in their mid 70s and unlikely to need surgery again. If you are young and want a realistic chance of not doing OHS again, your choice seems obvious. I've heard the TAVR stories for a long time and it will be good, I guess, but how many times can you put a valve in a valve before the opening gets too small to function properly.....that's why they have some success in the very old who are not likely to live more than a couple years...??

 

[honeybunny]

Hi, M.

I went with tissue because:

- I was afraid the ticking would drive me crazy (I don't like to listen to heartbeats) and, despite what others have posted about their mechanical valves NOT ticking, there are no guarantees it won’t and once the valve is in, that’s it.
- At my age (61) there is a possibility my tissue valve will last my lifetime.
- I wasn't crazy about being on warfarin.

That said, I never based my decision on the possibility of TAVR in the event I need a second OHS. My cardiologist does TAVR research and though I didn't ask him directly, he gave no indication that I would be eligible for that procedure down the road. Regarding warfarin therapy, FWIW, many here will provide you with facts about safe management of the medication if you choose mechanical.

It's been stated here before, and I agree, that deep down we know which way we want to go and look for information that supports our choice. In my case the potential ticking swayed my decision, however foolish that may seem to others. Valve selection IS a difficult choice but I am happy with my decision as I suspect most of us here are.

 

[Superman]

M Red,

Welcome to the forum. I hope you get the answers / reassurance that you are seeking.

Agreed with honeybunny. Personally - I would not base my decision today on potential future treatments. If everything, including the proverbial "sleep at night" test leads you to tissue, than a future TAVR would be a nice bonus if it happens. But I would make the decision knowing that a future OHS is the likely outcome. I've heard more than one anecdotal tale of cardiothoracic surgeons selling tissue valves using the TAVR as a future solution. Irresponsible in my mind. I've also had one cardiologist call tissue valves an "annuity" for the surgeons. Probably a bit too hard on the character of the surgeons.

As for me, I've been ticking away for over 25 years. I can still hear it. My wife can hear it. Got fired as the tooth fairy because of it (my kids have heard me sneak in to leave $ for the missing tooth). I teach adjunct at a local university and have had students hear it during tests. Doesn't bother me. Warfarin management is a thing that requires awareness. It's not all consuming. It's not a distraction. But it is something to be cognizant of. Personally, I prefer it to future OHS's.

A mechanical valve has a life time guarantee - so that's good. However, as soon as it fails, the guarantee is up. Get it? If one can't joke about their own mortality, what can we joke about? But seriously - I've had two OHS's. The first was just the valve. An aneurysm triggered the second, 18 years after the first. The valve was fine - but I elected to freshen up so I could get a one piece valve / graft and right size it to my adult heart instead of my teenage one. Should be good to go for the duration now. If I make it to 80, then I'll have spend over 62 years on warfarin with constant ticking in my head. Had I gone tissue, and managed to average an optimistic 15 years per valve, I'd be approaching my 3rd OHS with two or three more likely after that. Five seems like a lot of times to be split open. I'd rather not have to do it again if I can help it.

Any regrets I've read in the forums were outcome driven. The vast majority who are better off after surgery than before surgery are happy with their choice, regardless. I recall reading at least one poster who had a tissue valve last far shorter than expected and went mechanical the next time. I also recall reading one mechanical recipient who could not get their INR regulated and was not happy. Both situations are exceptions.

Good luck in your journey.

Superman.

 

[W. Carter]

I've heard the TAVR stories for a long time and it will be good, I guess, but how many times can you put a valve in a valve before the opening gets too small to function properly.....that's why they have some success in the very old who are not likely to live more than a couple years...??

The one year mortality rate with TAVR is 26%. :-( Not something I would willingly undergo. You have to take in account they are only using it in high risk patients, mostly elderly with other underlying health problems. That is probably the reason for such high mortality rate. I don't see it ever replacing OHS, younger healthy people with tissue valves are hoping they get it right before their re-operations, but I wouldn't hold my breath if I was them.

[FONT=arial, sans-serif]http://www.medscape.com/viewarticle/822900[/FONT]

 

[M Red]

Thank you all for your responses.

I just got back from meeting with one of my two potential surgeons. He felt fairly strongly that repair was not a great solution. He questioned the durability of repair. That was a surprise answer to me. But, it makes sense. If the repair only lasts for 7 years, for example, I'm guaranteed a second OHS. Also, even if the repair lasted for 15 years or more, once it fails a OHS is mandatory as you can't put a TAVR in a native valve. The mortality for the TAVR is more due to the high risk patient population and not due to valve failure or other valve related risks. He also indicated that due to my large ventricle size, anything but trace or no regurgitation could result in permanent heart damage. Yikes!

He also answered some other questions. Since I'll have a 27 mm valve put in, any subsequent TAVRs won't reduce my total diameter in a way that would cause diminished capacity for activity. You can put a TAVR in a TAVR as well without a reduction in athletic capcacity. On the mech valve plus side, there were some studies done showing that coumadin plus aspirin produced better outcomes. Also, the On-X has such a low INR that aspirin alone may be a possibility (but a study should be done before he would recommend taking that avenue). Also, I know of some phase II studies in an antisense Factor II inhibitor which has a seven fold reduction in thrombotic events with reduced bleeding. This new drug dissociates bleeding from antithrombotic activity. This new drug would be a huge plus for the mech valve population.

I was hoping this meeting would be the bolt of lightning answering my valve dilemma. If I don't go for a repair, I've answered the question of where to get my work done. I'll go to Brigham.

I still welcome all responses as I struggle with this choice.

 

[Warrick]

I would try and get them to repair your old one, or at least get more info on repair, better than having it in a jar afterwards wondering if they could have fixed it like mine..

 

[Odie]

Evaluation
Risk of bleeding event is higher with Mechanical valve than with bio valve

Isn't the risk of bleeding event higher with Coumadin usage, required with a mechanical valve, not really the valve type itself? If I'm not mistaken, there have been postings here from OHS patients who selected a bio valve but due to complications ended up on Coumadin anyway. Does anyone know how common that situation is?

 

[cldlhd]

What is he basing the idea that repair is unlikely to be an option? Mine was repaired earlier this year and from what I gathered the two main factors are the condition of the valve and the amount of experience and expertise the surgeon has with repair. If it's because your valve is in such a condition that the repair is unlikely to be durable that's one thing if it's because the surgeon doesn't specialize in repair that's another.

 

[M Red]

No, the issue the surgeon's concern was regarding what he thinks is a lack of durability. In other words, it won't last and then I'll be back in OHS. He is also concerned that unless there is trace or no regurgitation once complete, the left ventricle won't shrink in size. If the regurge is large enough after repair, the LV will continue to get larger and require surgery again.

But, based on the following video, I am a candidate for repair. It says that if the tissue is in a condition to hold a stitch and it is a simple regurgitation (as opposed to stenosis), then you are a candidate for repair. That is how I heard it anyhow.

https://www.youtube.com/watch?v=73uZzEZYogE

 

[cldlhd]

No, the issue the surgeon's concern was regarding what he thinks is a lack of durability. In other words, it won't last and then I'll be back in OHS. He is also concerned that unless there is trace or no regurgitation once complete, the left ventricle won't shrink in size. If the regurge is large enough after repair, the LV will continue to get larger and require surgery again.

But, based on the following video, I am a candidate for repair. It says that if the tissue is in a condition to hold a stitch and it is a simple regurgitation (as opposed to stenosis), then you are a candidate for repair. That is how I heard it anyhow.

https://www.youtube.com/watch?v=73uZzEZYogE

Exactly. The Dr in that video was the one who did my repair in February. I had zero leakage post surgery, echo few days after, I'm heading for another ct angio on Friday and an echo on the 19th to see how it settled in. He told me mine was 95% likely to be repairable but he wouldn't know if it could take a stitch until he was in there. I can understand how replacing a valve, especially one already in a conduit, would be a lot easier than repairing it. Replacing something is almost always easier than repairing or rebuilding it.

 

[M Red]

Exactly. The Dr in that video was the one who did my repair in February.

Looks like you had the best doctor I know of to do your repair. Congrats to you and hope it lasts a lifetime. I'm trying to get a consult with him to see if I'm a good candidate for repair and if he can take me on.

I gather from your writing that you were happy with the process, surgery and recovery. Can you give me any more color? Thanks kindly

 

[cldlhd]

Sure anything you want to know just ask. I'm not sure if he's taking new patients right now as he was just named President of the Society of Thoracic Surgeons. My follow up with him for next month was just rescheduled for me to meet with one of his nurse practitioners. Thanks for the kind wishes.

 

[M Red]

He is definitely a busy guy. They are going to review my records and tell me if I can have a meeting. So, I'm hoping.

How did you feel about the process, the surgery itself, and the recovery? What was the specific repair (commissural annuloplast, plication...?) I'm eager to hear anything you have to tell.

 

[Duffey]

I hope you can have the valve repaired. I had my replacement when I was 51 and went with the Edwards Perimount. It's been eleven years and no sign of it giving out anytime soon. Best wishes going forward.

 

[cldlhd]

He is definitely a busy guy. They are going to review my records and tell me if I can have a meeting. So, I'm hoping.

How did you feel about the process, the surgery itself, and the recovery? What was the specific repair (commissural annuloplast, plication...?) I'm eager to hear anything you have to tell.

I'll have to dig up the details. I had the David procedure ,the ascending and the hemi arch graft and the valve repaired. The process is a process but it wasn't that bad. If you have a consult with Bavaria be prepared to sit in the office all day. He definitely is into his work and passionate about it. The last thing I remember about the surgery was talking to the anesthesiologist , Idon't remember waking up or the breathing tube.As for the recovery the first 2 days were a little rough but not in regards to pain, I was a bit out of it but everybody is different . The staff in the step down unit were great and by the 6th day I was definitely ready to come home.