Bicuspid Aortic Valve RECONSTRUCTION

[Tirone]

In the coming months I'll have to make a decision about the way I want my bicuspid aortic valve to be fixed. As all here, I wish for a long and normal live afterwards. In the last years (tricuspid) aortic valve reconstruction has become accepted especially in the treatment of aortic regurgitation. Several centers have started to offer these reconstructions for bicuspid patients. Since this is a rather new option there isn't much knowledge about when it is possible or the long term survival yet. Reconstruction has several advantages compared to AVR or the Ross procedure: No anticoagulation, no foreign tissue, operation on only one valve, reconstitution of the normal anatomy.

I'm 30, do a lot of sports including martial arts, and would not want to have surgery on two valves. Reconstruction would make all of this possible but it sounds almost too good to be true... Did your surgeons mention this possibility? How do you think about valve reconstruction? Would you let them "try" this method on you?

 

[socalhome]

Hi Tirone,
My husband looked at the same option. He had surgery this winter, but we had spent some months with consultations exploring the option of a repair vs. replacement. He had aortic regurgitation and the leaflets on echo looked tri leaflet without calcification. We consulted with many surgeons and spoke with a number of academic cardiologists. It is a great option for the above reasons you list. But with a repair you should anticipate another surgery down the road and hope for many years on your repaired native valve. One consistent remark made by our various experts was to head to a top center for the option. We consulted at Mayo and can send you the people we met with there. After more tests (TEE, CAT scan, more echoes), their folks said that his valve most likely wouldn't be a great candidate for repair (they can't be 100% until you are on the table). If it had been an option, he would have opted for the repair.
As it ended up, his wonderful surgeon said it was definitely not repairable and was worse than all the non invasive studies showed.

 

[TheGymGuy]

From lots of research and reading here looks like repairs on at least Aortic Valves are a temporary solution. This means it might last several years or several decades, but ultimately you will need a redo at some point in your life-time. There is a member on here his user name is "HiMyNameIsDale". He has surgery last march 2012 and it was Aortic Repair as he was a very good candidate for it. Unfortunately, with repairs sometimes they just do not take, and he had a re-operations within several days and went with mechanical to my best recollection. He was in his mid-20s.

Having shared above data, I am not saying its a bad idea, there might be some people that it works for, but I am a huge proponent of minimizing time on the table and if you can go for known solution I;d just feel safer about that.

 

[Tirone]

Thanks for your reply. The fact that there will be a second surgery is not a pleasant thought. I would just hope that this can be done endovascular by then. But that's gambling with rather bad odds... The freedom from reoperation after 10 years is up to 99% in certain top centers. These are fantastic numbers, but there were only few patients included in these statistics. Other centers report a 50% probability of reoperation within 10 years. So it's hard to draw a conclusion.

It would be great to hear from someone who went through an aortic valve repair.

 

[Tirone]

Hi GymGuy

Just saw your reply. I would mainly go for reconstruction because there's no coumadin needed and it's supposed to last longer than a tissue valve. You're absolutely right regarding time on the table. I'd rather have "no complications" than "no coumadin".

BTW: I'm very impressed by your weight lifting videos. I hope to be able to do all of that postoperative again.

 

[TheGymGuy]

If I could put it plainly, and I will: Coumadin ain't no thang. A relatively healthy, individual with decent habits is sort of expected to stay in range. If you already have decent eating habits, and take vitamins daily, Coumadin is just another little pill to take. I went up a weight class for my competitions and needed to adjust doze up a tiny bit, and soon I will drop some uneeded weight and will probably need to reduce my doze a little too. Thing is with home testing and abundance of strips, you can stay in range with just consistency. I am not advocating a mechanical valve, to each their own, I am just saying that Coumadin is Coumadin. The only change as an athlete that I had to make is that now when I deadlift I need to wear shin-guards to protect the bar from my shins

 

[Tirone]

I never thought about it like that. As an athlete I try to eat low fat, get enough proteins, carbs depending on the training and vegetables/fruits whenever I like. During periods of intense training I take supplements on a daily basis. I've been on "diet" the last ten years without even noticing it. Coumadin probably wouldn't make it much more complicated. However, having to worry about how much systolic pressure my repaired valve can bear during every training might be more of a deal. This may be off topic, but helped a lot

 

[Heart Of The Sunrise]

Hi Tirone:
I'm having my valve replaced. I know that my surgeon is very good at repairing valves. I would like to have gone that route. But, my valve was too far gone.
Best of luck!

 

[Mike59]

Interesting comments guys:

Here is an interesting fact on the 24th April 1979 I underwent aortic valve repair yes 33 years ago The the age of 19
At the time it was 50 / 50 whether they would. Put a mechanical valve in.

This reconstruction was extremely successful for 30 plus years with no meds or physical restrictions

Roll forward 33 years due to the valve starting to leak etc I had it replaced with a tissue valve at the age of 52 on the 17th April 2012 yes 32 years and 51 weeks apart

I am extremely grateful to the options given to me and for the skills of the surgeons

Take every day at a time and live life to the full but go with what feels right for you and if at all possible give for repair would be my advice

Good luck with what you decide upon from the UK

Cheers
Mike

 

[Garserin]

Tirone, I had my aortic valve repaired almost two years ago and while I know there is a small possibility of needing another operation in the future I do not expect one. I am not sure if it makes a difference, but I have a tricuspid aortic valve and had severe regurgitation due to a massive aneurysm. Good luck with whatever procedure you go with.

 

[Tirone]

Thanks for you replies Mike and Garserin. I'm glad to hear that it went so well for the two of you. 30 years are impressive!
Garserin: Are there any restrictions regarding sports, heavy lifting, diving or are you allowed to do whatever you like?

 

[Garserin]

I have no restrictions, but you should know I'm a 64 year old woman who runs, swims, bikes, works out on weight machines in the Y, but I do not dive or lift extremely heavy weights. I have my hr up into the upper 160s or lower 170s on a regular basis when I run.

 

[Mike59]

Hi Tirone

I had no restrictions placed upon me regarding sports or exercise

Hope this helps

 

[camgough]

Hi Tirone,

I'm a 32 yr old male and had an aortic valve repair almost 3 years ago. I have no restrictions, and no meds. I am anticipating another surgery down the road, as the bicuspid valve will likely not last, even after repair. Knowing I might need another surgery is a bit of a stressor, but living life without meds is great. I have annual echos to keep tabs on it, and although the valve is not 100%, I feel pretty good! No physical restrictions, play ice hockey and returned to full duty policing.