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

[cldlhd]

It was the David V with complex bicuspid valve leaflet repair. "Left and right coronary button reimplantation with commissural plication x1. There was a prolapsed leaflet into LVOT. The raphe was not apparent , the leaflets were otherwise intact, without any major calcification or other primary abnormalities. repair was 3 steps. 1) annular reduction 2) primary prolapsed leaflet repair 3) increasing the height of the coaptation zone with a leaflet edge shortening procedure. The raphe was not released as it was not there. " Apparently I also had annular reduction and stabilization. " static testing was done which was outstanding and showed no leak whatsover . We were very satisfied with this repair. This was perfect. Postop TEE showed ZERO aortic valve insufficiency and very minimal aortic valve gradient. It was a 180/180 repair." Whatever is in the quotes is some of what was written in the report, it's 6 pages so.....

 

[M Red]

Thank you cldlhd and Duffey. cldlhd, it will take me a little while to digest what you have written. Thank you for laying out the details. I do now have a tentative meeting set up with Dr. Bavaria. I'm so grateful.

 

[cldlhd]

Thank you cldlhd and Duffey. cldlhd, it will take me a little while to digest what you have written. Thank you for laying out the details. I do now have a tentative meeting set up with Dr. Bavaria. I'm so grateful.

Thats good to hear. Ya I don't understand all of it, some of it seems semi self explanatory but other stuff..... The stuff in quotes is part of my post surgery report, there's a lot more but I tried to throw in relevant information. Real nice he cancelled my follow up with him but he's setting up meetings with new patients-ha! He used my case at a aortic valve repair symposium in May I was thinking about asking for a copy of his presentation.
Like I said if you have a meeting with him bring a snack and some reading material...

 

[M Red]

"Thats good to hear. Ya I don't understand all of it, some of it seems semi self explanatory but other stuff..... The stuff in quotes is part of my post surgery report, there's a lot more but I tried to throw in relevant information. Real nice he cancelled my follow up with him but he's setting up meetings with new patients-ha! He used my case at a aortic valve repair symposium in May I was thinking about asking for a copy of his presentation. Like I said if you have a meeting with him bring a snack and some reading material...

Looks like you had some aortic root reconstruction done as well. The long term freedom from re-operation for that procedure is really good. Something like 94.3% free from re-operation at 20 years.

http://www.annalscts.com/article/view/1396/2011


For some more good reading on Aortic valve repair with aortic root reconstruction, see the following:

http://circ.ahajournals.org/content/128/8/854.full

Looking forward to my meeting with Dr. Bavaria. He has come back with an assessment that I am 85%-90% likely to be a good candidate for repair.

 

[cldlhd]

Looks like you had some aortic root reconstruction done as well. The long term freedom from re-operation for that procedure is really good. Something like 94.3% free from re-operation at 20 years.

http://www.annalscts.com/article/view/1396/2011


For some more good reading on Aortic valve repair with aortic root reconstruction, see the following:

http://circ.ahajournals.org/content/128/8/854.full

Looking forward to my meeting with Dr. Bavaria. He has come back with an assessment that I am 85%-90% likely to be a good candidate for repair.

Glad to hear you have an appt. and thanks for the links. I may start another thread on the subject but I received the results from my ct angio the other day and had a question maybe someone can answer. As of my surgery ( 2/15 ) I had no signs of calcification or stenosis but this angio showed some calcification of the aortic annulus. From what I understand all calcification begins with "endothelial disruption" or damage to the endothelial. I would have to imagine that surgery,what with all the cutting and sewing, definitely damages it . So I was wondering if it's pretty common for it to happen some post surgery. If so my hope is whatever set in did so before everything healed and the endothelial recoated everything, assuming it did, and now the progression should slow or hopefully stop. Just seems a bit odd that I made it to 45 without any calcification but in the 11 months post surgery some has taken place.
M Red sorry for the thread hijack.

 

[M Red]

Glad to hear you have an appt. and thanks for the links. I may start another thread on the subject but I received the results from my ct angio the other day and had a question maybe someone can answer. As of my surgery ( 2/15 ) I had no signs of calcification or stenosis but this angio showed some calcification of the aortic annulus. From what I understand all calcification begins with "endothelial disruption" or damage to the endothelial. I would have to imagine that surgery,what with all the cutting and sewing, definitely damages it . So I was wondering if it's pretty common for it to happen some post surgery. If so my hope is whatever set in did so before everything healed and the endothelial recoated everything, assuming it did, and now the progression should slow or hopefully stop. Just seems a bit odd that I made it to 45 without any calcification but in the 11 months post surgery some has taken place.
M Red sorry for the thread hijack.

There are some studies out there, including the ones that I included in my post, that discuss long term freedom from re-operation. In one study, of 371 patients at NY Mt. Sinai, it shows that over a 18 year period post-surgery, 94.8% were free from re-operation. These patients all had aortic root aneurysms and 47% had moderate to severe AI, 35.5% had Marfan, 12.1% had aortic dissection, 9.2% had bicuspid aortic valve, 16.1% had aortic arch aneurysm and 10.2% had coronary artery disease. Presumably, some had a combination of one and another (like bicuspid plus Aortic Insufficiency). All of these patients, many were worse off than you, had freedom from re-operation at 18 years. To me, that says the surgery itself does not cause stenosis. Or, it doesn't cause stenosis severe enough to require intervention.

The other study in Canada, at the Peter Munk Cardiac Centre, had 374 patients with aortic valve sparing operations. These patients had Marfan 35.8%, bicuspid 10.8%, diabetes 3%, Hypertension 35.8%, hyperlipidemia 21.2%, COPD 2.3% and etc. Additionally, 8.4% of them were emergencies. In this study, it appears that most of the patients had a worse off starting point than you. About 2/3rds of them had aortic repair in addition to the aortic root reimplantation. In these patients, at 20 years, 89.4% had freedom from moderate or severe aortic insufficiency. Also in these patients at 20 years, 94.2% had freedom from re-operation.

Based on the two studies above, and they are amazingly consistent in data, there does not seem to be a link between the operation and calcification or stenosis sufficient to cause AI or re-operation. Also, the techniques used in 2015 were far better than the ones used in the beginning of the data periods above.

 

[cldlhd]

I don't think it's anywhere near a point where I think it might cause a need for a reop. I'm just not a big believer in coincidence and the fact that at 45 I had no calcification of the annulus and 11 months after it's operated on it's there combined with the fact that everything I read indicates that " endothellial disruption" always precedes calcifiction. As I understand it the slippery endothelia protects the arterial wall and if it get damaged, which I imagine surgery would do, it can allow calcium to be deposited . So my hypothesis is that's exactly what happened with me. I'm not saying it as if I blame anyone for it- I'm very grateful for the surgeon and the team I had and I don't second guess the decision at all- I'm just curious. I'm hoping that it'll never get to the point where it causes a problem and judging by my rudimentary understanding of my echo the valve is working great.

 

[DachsieMom]

Just wanted to say good luck. I was 41 so went with mechanical. While initially a struggle, warfarin is fine now. I take aspirin as well. I home test once a week. I don't mind the ticking and the thought of another surgery really scared me. I have a 21 mm st Jude aortic conduit graft.

 

[M Red]

I don't think it's anywhere near a point where I think it might cause a need for a reop. I'm just not a big believer in coincidence and the fact that at 45 I had no calcification of the annulus and 11 months after it's operated on it's there combined with the fact that everything I read indicates that " endothellial disruption" always precedes calcifiction. As I understand it the slippery endothelia protects the arterial wall and if it get damaged, which I imagine surgery would do, it can allow calcium to be deposited . So my hypothesis is that's exactly what happened with me. I'm not saying it as if I blame anyone for it- I'm very grateful for the surgeon and the team I had and I don't second guess the decision at all- I'm just curious. I'm hoping that it'll never get to the point where it causes a problem and judging by my rudimentary understanding of my echo the valve is working great.

cldhd, glad to hear the valve is still working great. Hope it continues that way for the next 45 years.

 

[M Red]

Just wanted to say good luck. I was 41 so went with mechanical. While initially a struggle, warfarin is fine now. I take aspirin as well. I home test once a week. I don't mind the ticking and the thought of another surgery really scared me. I have a 21 mm st Jude aortic conduit graft.

DachsieMom, Thank you!! I'm terrified, but have growing confidence over my choices so far.

 

[cldlhd]

cldhd, glad to hear the valve is still working great. Hope it continues that way for the next 45 years.

Thanks, if you end up having it done by Dr Bavaria I'll bring you a cheesesteak...

 

[M Red]

Thanks, if you end up having it done by Dr Bavaria I'll bring you a cheesesteak...

That would be great. BUT, I gave up meat when I first heard about my leaky valve. I know they aren't related, but facing issues of mortality had me reconsidering my diet.

I'll give up meat, but not whiskey! I'll be down your way in about three weeks.

 

[cldlhd]

Ya bourbon is good for you, well that's my theory anyway.I'll be there in the 1st.

 

[knotguilty]

I think you are doing the right thing, evaluating in your own mind and weighting the options. What you can and can't live with. Good luck.

 

[marvsehn]

I am also looking for the right aortic valve. Although I am 64, I am very active. Doing lots of research and have talked with the Docs at Duke Medical and will have a second opinion by Cleveland Clinic. Looks like it is my choice. Either no warfarin and a second procedure 15 years from now or the On-x and warfarin. Every time I think I am close to a decisions more info pops up. the latest is http://aats.org/valve/presentations/2013/Thursday/14 Schaff 145 mechanical vs bio AATS.pdf by a Mayo Clinic Dr. This was quite interesting and pointed to use of a mechanical valve for those 50-70. The main point was a longer survival rate after 10-15 years.

Since the On-x valve was approved for lower levels of warfarin (1.5-2.0 INR) in April 2015 I am still looking for info on the ability to manage warfarin in a tighter low range. If it is possible then the risk of bleeding should drop! I am also concerned that about 30% of the bio valve people end up on warfarin anyway (for some reason).

So, although I might be leaning to the On-x valve I am still undecided. My surgery date is March 1 so I still have a bit of time.

Good Luck. I will be interested to hear your decision on the valve type and why.

 

[dick0236]

Since the On-x valve was approved for lower levels of warfarin (1.5-2.0 INR) in April 2015 I am still looking for info on the ability to manage warfarin in a tighter low range. If it is possible then the risk of bleeding should drop! I am also concerned that about 30% of the bio valve people end up on warfarin anyway (for some reason).

I have never had difficulty in maintaining an INR in my acceptable range (2.5-3.5) almost all of the time and have never had an INR above 5 more than once or twice since the INR system was introduced in the late '80s and those times probably were meter error (lab tests did not confirm high INR). I have had many conversations with docs over time and serious bleeding or clotting problems are most often due to patients mismanaging the drug. Personally I have found Warfarin to be a very predictable drug and with home monitoring weekly it is easy for me to maintain my INR. It may become more difficult to maintain my INR as I get older.....but at 80 it hasn't yet.

BTW, as you would expect, I have had a number of cuts during my time on warfarin and some have required stitches. I have never experienced serious or uncontrollable bleeding with any of the cuts. I have also had some "nasty looking" bruises that lasted a little longer than usual. I have never had any internal bleeding......so far

PS: My only problem with warfarin was a LOW INR.......caused a clot and stroke......and it was my fault, not the drug.

 

[Paleowoman]

I am also looking for the right aortic valve. Although I am 64, I am very active. Doing lots of research and have talked with the Docs at Duke Medical and will have a second opinion by Cleveland Clinic. Looks like it is my choice. Either no warfarin and a second procedure 15 years from now or the On-x and warfarin. Every time I think I am close to a decisions more info pops up.

It can be a difficult choice, but as someone on here once wrote, whatever you choose is a good choice I had my aortic valve replaced when I was 60. I was/am very active, I do weight lifting, heavy stuff, not girlie weights, three times a week, and I walk several miles every day. I chose a tissue valve even though it will mean another valve replacement in around 15 years time - my reasons: I didn't want a ticking noise as I have very acute hearing, and I didn't want warfarin for multiple reasons. I'm now two years out from surgery and, apart from having the incision scar, I don't feel any different to how I did before surgery, I don't notice that I have a replacement valve at all. The pain will be when I have a "re-do" but that's a once 'pain' albeit horrible, rather than a constant 'pain' (of ticking and warfarin). But everyone has their own preferences and I'm sure you will make the best decision for you - I hope your cardiac surgeon and cardiologist give you advice too !

 

[pellicle]

Hi

I am also looking for the right aortic valve. Although I am 64, I am very active. Doing lots of research and have talked with the Docs at Duke Medical and will have a second opinion by Cleveland Clinic. Looks like it is my choice. Either no warfarin and a second procedure 15 years from now or the On-x and warfarin.

something like that ... although pretty much all the pyrolytic carbon bileaflet valves (St Jude, ATS/Medtronics ) have similar profiles. All are good and if a history of performance rather than just "sleek design" is important to you then the StJude has a long history of success behind it.

Every time I think I am close to a decisions more info pops up. the latest is

http://aats.org/valve/presentations/...bio%20AATS.pdf by a Mayo Clinic Dr. This was quite interesting and pointed to use of a mechanical valve for those 50-70. The main point was a longer survival rate after 10-15 years.

indeed ... but I wonder if its because you were thinking tissue prosthesis and the more you learn about mechanical the less problematic they seem? Well a similar report can be found at this URL

http://mayo.img.entriq.net/htm/MayoP...articleID=4071

It opens fine in Firefox but some people have reported problems in Chrome on a tablet (like an iPad).

I've also got a blog post where I outline what I see the major points as being
http://cjeastwd.blogspot.com/2014/01...r-choices.html

Since the On-x valve was approved for lower levels of warfarin (1.5-2.0 INR) in April 2015 I am still looking for info on the ability to manage warfarin in a tighter low range.

Its an intersting point and when first starting out I can see the allure. However my question to you is : does a small drop in range make any difference? I normally manage myself (because I'm that sort of person) and my INR is typically 2.6 My surgeon had suggested to me a range of 2.2 ~ 3 and yet the guidelines are (variously 2~3 or target=2.5

He is of the view that lower INR is correlated to Pannus growth (pretty much the major significant threat to a mechanical valve function). I've not found much research, but surgeons often form opinions on their own experience / conferences and other "unpublished" works. So who knows, maybe 30 years in the field gives them some advantages?

If it is possible then the risk of bleeding should drop!

it doesn't quite work like that. The actual risks of bleeding are a function of two things: age and INR. The graph below (from an extensive research paper) shows the reported incidents of problems (clots with INR too low, bleeds too high)

the data shows that you really need to push the threshold of 3 before you see an increase in bleeds

There are other studies (GELIA for instance) showing that all the bileaflet pyrolytic carbon valves are probably conservatively "anti-coagulated" and all (not just On-X) could be safely dropped to a min of 1.7 without problem.

Does this mean a revision of dose? I don't feel that it does. What it means to me is that you can take a consistent dose (which you can determine over time what that is) that sometimes dips you below 2 and sometimes rises you towards 3 without concern to you or your INR manager (and such squiggle in INR is normal).

This also makes life easier for your INR manager (and if you aren't dippy, unreliable, mentally incompetent or senile) then I would argue that that INR manager should be you. Many people (mainly outside of the USA) manage their INR successfully. I'm one who does it not only successfully but does my best to share how and encourage and assist those who do.

I had a dental clean a few weeks back and my dentist always remarks how little I bleed for a fellow on Warfarin. I put this down to effective INR management and that many many many people at clinics have an INR seesaw that they know nothing about (due to poor management).

Some tips on my blog:
http://cjeastwd.blogspot.com.au/2014...ng-my-inr.html

I am also concerned that about 30% of the bio valve people end up on warfarin anyway (for some reason).

well I'm inclined to think that number is a little high, but the causes are varied, with Atrial Fib being one ... other causes are more difficult to "pin down"
So, although I might be leaning to the On-x valve I am still undecided. My surgery date is March 1 so I still have a bit of time.

Good Luck. I will be interested to hear your decision on the valve type and why.

well I didn't "pick" my valve, I got it. My last OHS was my 3rd. I'd had one when I was a kid (to "repair" the valve) another at 28 to put in a homograft, and the last one at 48 to put in a mechanical. I got an ATS and an aortic graft (due to aneurysm). We (surgeon and I) agreed (he told me, I agreed) that a 4th operation would not be at all desirable and that a mechanical gave me the best chance of a long and fruitful life. With a wife and plans for a future I wanted to minimise shocking them and maximise being a good healthy husband for my wife.


Best Wishes

 

[M Red]

After so much research (100s of hours) and discussion with doctors, I am getting closer to a decision. The more i've studied and talked, the more I realized that a lot of this is just personal preference of what we value most. Confidence of never again having surgery (mech valve), the freedom from daily drugs and testing (bio valve, or the possibility to be fixed for life (repair) or face another OHS. Daunting decisions. For me, I believe that advancement in medicine will make a TAVR in a biovalve an option by the time mine fails. So, either I go bio valve or repair with a bio valve backup. I'm also down to Brigham & Women's or UPenn as the hospital. The only reason I'm not final on the hospital or procedure is because I haven't actually been to UPenn yet. I go in a couple of weeks. I have this odd sense of confidence and terror.

 

[cldlhd]

After so much research (100s of hours) and discussion with doctors, I am getting closer to a decision. The more i've studied and talked, the more I realized that a lot of this is just personal preference of what we value most. Confidence of never again having surgery (mech valve), the freedom from daily drugs and testing (bio valve, or the possibility to be fixed for life (repair) or face another OHS. Daunting decisions. For me, I believe that advancement in medicine will make a TAVR in a biovalve an option by the time mine fails. So, either I go bio valve or repair with a bio valve backup. I'm also down to Brigham & Women's or UPenn as the hospital. The only reason I'm not final on the hospital or procedure is because I haven't actually been to UPenn yet. I go in a couple of weeks. I have this odd sense of confidence and terror.

You'll be fine. My choice ended up being repair with mechanical as a backup. If Bavaria thinks it'll be easily repairable I would definitely choose that over tissue as the ability to repair itself gives you the POSSIBILITY of once and done.
Bavaria will put you at ease . He told me what I had was no big deal and I replied that it was easy say that from his side of the table. As you say everyone has their own thoughts and preferences but I told him only to repair it if the valve looked good and he thought it had a shot at going the distance.