Bicuspid Aortic Valve Replacement/Repair

[sknydave]

Hi everyone! I recently found this site and I have spent lots of time searching through old posts and I've learned a lot!

About me: I'm 25 years old with a BAV + Aortic aneurysm. I've had the usual slew of tests done: Echo, CT, and just had the cardiac cath performed yesterday (that was TONS of fun. ) I visited several surgeons and decided to have surgery with Dr. Beaver next month at the University of Florida (Shands Hospital.) Dr. Beaver is very nice and he explained all of the possible options available. One option in particular that caught my attention is repairing the valve. I have read that repairing bicuspid valves is rather new and not common. He explained that he has successfully repaired these valves and the patients are doing well. He also said the valve will be tested immediately following the repair, and if it is not operating up to spec then it will be replaced with the valve of my choice. I just wanted to get some feedback on this, as it's not exactly a topic with tons of information readily available. Has anyone on this forum had their bicuspid valve repaired?

Thanks!

 

[MarkU]

Welcome! This is a great site: good info, and lots of great, supportive folks.

Glad that to see that you're doing your research so you can make a informed decision.

I had my bicuspid valve replaced with a St. Jude mechanical 6-1/2 years ago here in Sarasota. I've been happy with my decision. Repairing my bicuspid valve was not offered as an option for me; my only choice was between mechanical and tissue.

Shands is a great hospital. I'm sure you'll get great treatment there (Plus, I'm somewhat biased because both my kids are UF graduates - Go Gators!).

Good luck,
Mark

 

[Natanni]

Welcome, glad you have found this site!

My husband had his BAV replaced in 2005. I can't offer info on repairs of BAV, other than because my husband's valve was bicuspid, the Mayo wouldn't attempted a repair. There will be members with more first hand experiences dropping by soon with info for you, and make sure you check out Arlyss's posts--a wealth of info

Edited to add that vegetations on my husband's native valve would have made repair impossible, but that was not known until they actually did his surgery--TEE X 3 didn't reveal the vegetations.

 

[DeWayne]

I don't know about repairs being new Mine was repaired in 1959. I finally had to have a valve in 2006, but only becasue of an anuerysm. They said if not for that I would not have needed a valve replacement even yet.

 

[sknydave]

Thanks for the replies everyone!

DeWayne, I find your reply interesting. I just read an editorial from 1997 titled "Aortic valve repair: still a dream?" It still seemed experimental - even in 1997! Glad to hear you had great results for so long.

Thanks again

 

[Tom F.]

Repairs of bicuspid aortic valves is sort of a new thing. Dr. David out of Toronto, one of the best there is, has published on what he has learned in his repaie procedures. He might be the best to talk to abouot this procedure.

 

[sknydave]

Thanks, Tom. I found an interesting article with plenty of great information Dr. David wrote here:

http://cardiacsurgery.ctsnetbooks.org/cgi/content/full/2/2003/811

 

[DeWayne]

I know my cardiologist was a bit surprised to see that I had a true biscupid aortic valve. Not one where 2 leafs where fused but rather a true symetrical 2leaf valve. I get from reading this article above that might be a rather rare condition. I wonder if that is why the repair they did on it back in 59 lasted as long as it did.

 

[Marguerite53]

Hello! Just wanted to welcome you to our wonderful community. I have an almost 25 year old son (and a 22 year old son, and 20 year old daughter). Trust me when I say, you have a fantastic attitude for someone your age!!!! Keep that attitude right where it is, positive, informed, accepting......it will serve you well! Optimism is one of the best ingredients for success in this venture.

Trust is another good ingredient. It sounds like you have found a surgeon you can trust. Keep him!! Sometimes we search for too much perfection when all we need is strong professionalism and experience.

Please feel free to start as many threads as you have questions. Knowledge is power and you will find a lot of experienced people here who are very willing and able to share what they have gained from their own adventure.

Let us know when you are planning your "trip over the mountain".

Marguerite

 

[jonesie]

Hi and welcome!

I was 24 last year when I had my bicuspid aortic valve and aortic aneurysm replaced. My surgeon also recommended a repair of the valve and told me that aortic valve repair has come a long way. Unfortunately, my valve was too damaged to be repaired and I received a tissue valve instead (my 2nd choice after repair). I was one of the unlucky ones that a repair was not a possibility, but along the way learned plenty of information about the increased successes others have had. Another option to look into might be the Ross procedure.

Choosing a surgeon that you feel comfortable with and trust is a big part of the process. I am glad that you have found someone that you feel confident about. Good luck with everything and feel free to ask any questions.

KJ

 

[DeWayne]

I don't see how they could repair a stenotic valve ? It's all stiff and calicified.

Now a leaky valve maybe.

I too had a true BAV.

In my case I was 5. The valve was neither stiff or calcified, just that the valve did not open all the way, they operated to open it up so that is allowed more blood through.

 

[sknydave]

Thanks for the replies!

Rckrzy1: Everything I have read so far indicates they are only performing repairs on leaky valves, but that certainly doesn't mean there aren't some doctors out there repairing stenotics!

Thanks for the info, Jonesie. Sounds like the options presented to you were the same as mine. I must admit I'm hoping they can repair mine, though



Thanks Marguerite! I've actually had 2 chest surgeries in the past to repair my ribs and sternum (I was 18 years old) so unfortunately I'm not a stranger to this sort of thing. While it is very frustrating to go through something similar again, I have no choice but to stay positive. I actually plan on returning to sports after surgery and rehab. I'm having surgery August 14th.

It's funny.. For years I felt as though I had to work twice as hard as those around me, as though I was getting tired faster than everyone else on the court, field, etc. When I found out about this it allllll made sense

Take care everyone!

 

[Mike C]

If you decide to go with valve sparing procedure, have a backup plan, meaning type of valve just in case.

it may become a game time decision by surgeon when actually see valve.

 

[ALCapshaw2]

If you are interested in the Ross Procedure (where they replace your Aortic Valve with YOUR Pulmonary Valve and then replace your pulmonary valve with an artificial valve), see posts by "StretchL". He also has an extensive Photoalbum of his entire surgery (it it is still up) that is quite interesting. LOTS of information on the Ross Procedure and choosing a VERY EXPERIENCED practicioneer of the art.

For a Second Opinion, the Cleveland Clinic has an on-line second opinion service (around $600 I 'think'). CC is the #1 rated Heart Hospital and has LOTS of experience with Mitral Valve Repairs. I'm not sure about their experience with Aortic Valve Repairs.

'AL Capshaw'

 

[RCB]

A little valve history

A little valve history

I don't see how they could repair a stenotic valve ? It's all stiff and calicified.

Now a leaky valve maybe.

I too had a true BAV.

It is called a commissurotmy. The first recorded one was done in the ?20s using the surgeon?s finger to open up a fused leaflet. Today, it is most often done with a balloon. Myself and others here have had them.

In my case I was 5. The valve was neither stiff or calcified, just that the valve did not open all the way, they operated to open it up so that is allowed more blood through.

Dewayne is one of truly fortune few who had a surgeon go in and risk the early death of a patient to give him a chance at a normal life. Most children died during these procedures back than and few surgeons were will to risk it. If your heart valve couldn?t be repaired back before 1960, you just died on the table- thousands did and many more just passed away at home as nothing could be done.

 

[xbxb]

Here is my experience - and maybe some of these thoughts will help you in your decision. After reading your posts - I know you are going through some of the thoughts I had.
I am 44 and(I was 42) had a Bicuspid Tissue Saving Repair of the Aortic Valve and Aortic Root Replacement.

My surgery was performed at the Mass Gen Hospital in Boston.
I did a lot of research along with my cardiologist before deciding on Mass Gen. - and there is just not a lot of data in the medical literature on repairing a bicuspid Aortic valve. Cases such as this are relatively rare- most of the time the valve is replaced- patient is older, or depends on the experience of the institution where you are having your surgery. There is a little bit of data from the medical literature 98-02 where success was soso on bicuspid repairs but the data pool is very small - remember most people that have a bicuspid valve repair are older and have it replaced.
My coronary arteries were clean and that I was told make the surgery 10 times easier - no bypass needed.

(A bicuspid valve is a disease of the Aorta and 50% of bicuspids will have an enlarged Aorta that needs work. I would recommend that you speak w/an aorta specialist- as others here have suggested).

FYI my repaired valve is noisier than it was before. . . not a big deal.
FYI - the world record for an animal valve is 25 yrs.

The Surgeons I received opinions from - had done repairs and Aorta Replacement/Repairs (All were experienced valvers) - received opinions from Brigham and Womans, Cleveland Clinic, Texas Heart Institute, Beth Israel. These experienced doctors agreed though they cannot really tell you why, is that it is always better to use your own tissue.

I am sure you know the biggest issue is your age in your valve decision.
I was told I was the ideal candidate by Dr's that do the repair.
(I was also told to put in a mechanical many times by other surgeons-and be done with it, before I did a lot of research and spoke to the Aorta specialists).

42 - in very good physical shape, non smoker.
My valve was not stenotic - calcified. I think this is the biggest consideration, and most likely the reason a repair was possible.

The TEE test was the confirmation that my valve was most likely repairable- gives a good look at the valve.

Still even though I was given an 80% chance of repair by my surgeon after the TEE, (other said 50%)I was told that the decision would be determined in surgery. In surgery, after the repair they test the valve and if they felt it would not function correctly a replacement would be made.
The biggest complication and what made the surgery complex was the aortic root replacement. There are many, many valve surgeries, but less w/root replacements and much less with repairs of bicuspid valves.

I spoke w/many educated people (cardiologists, surgeons, etc.) before my surgery. I also had the help of my cardiologist - who helped me digest all the info and was looking to help me find the best outcome - my opinion is that many of the Dr.s that are out there are not familiar with repairs- I think due to the number of patients they see that would be considered a good candidate. Most people that have valve surgery are close to 70, and an animal valve that could last 12+ years is an option. Also as you get older bicuspids tend to get stenotic - and thus become unrepairable. As you know in your 40's or low 50's- or in your twenty's- a valve type decision is a little more difficult. Also the little data that was available in the medical literature had many redo's - that is why many people hear a repair is not possible.

My experience was to find the people that did have experience with cases such as mine - and these people all believed a repair was most likely the best option. I actually was searching for Aorta specialists. The AORTA is the serious part of this operation - and in my opinion there are far more experienced valve surgeons than Aorta specialists.

I asked my surgeon "if my valve was repaired, and someday needed to be repaired again, would he replace it or rerepair it?" he said he never thought about it but that he would probabably try to repair it again if possible.

My repair does leak, but minimally (as my Dr. says - it has always leaked), and due to the artificial root, the conduit does not expand and thus helps maintain the valve composure.
With my repair I have virtually no lifestyle restrictions. On the down side more than likely I will face another surgey - but the thought is - hopefully when I am old and grey. There is little data.
The risk increases on the second (95-5)surgery due to scar tissue- but hopefully this surgery will be far, far, far in the future where there will be new advancements!

I am coming up on 2 years since my surgery - and the last few months I really feel great!
If you have any questions message me. Good luck.

 

[gdfd]

My findings

My findings

Hi sknydave,

Warning: I’m not a healthcare professional and my opinions could be incorrect. Please do your own research to confirm or infirm them.

I'm in the same situation as you. I searched the Internet for the possible ways to fix the problem and I found the following:

1. BAV repair. Offered usually for people with aortic regurgitation and none to mild aortic stenosis. More information could be found here: http://www.clevelandclinic.org/heartcenter/pub/guide/disease/valve/youngvalve.htm
2. Ross procedure. It seems that in the case of a person with aortic aneurysm (AA) this would be a fix for only a short time. The following article http://circ.ahajournals.org/cgi/content/full/106/8/900 states that persons that have AA have also the aortic smooth muscle cells compromised. This is the same for the smooth muscle cells of their pulmonary artery but, I guess that because the blood flow pressure in the pulmonary artery is not so high, it is to a lesser extent than for the aortic one. So I think that in our case is just a matter of time until the same dilatation of the “repaired aorta” will occur. However, for people with BAV that are old enough to hope that an AA will never occur to them, this seems to be the perfect choice. I would be happy if someone could confirm or deny this.
3. Homograft. I have very few information regarding its lifespan. You could look here: http://www.future-drugs.com/doi/pdf/10.1586/14779072.2.1.97
It seems that for young people the homograft is a better choice that a stented bioprosthesis (see Figure 1.).
4. Bioprosthetic valves. Often I found that their lifespan is limited for young people (less than 60 y.o.). However it seems that in 2002 the percentage of bioprosthetic valves used at The Cleveland Clinic Foundation shifted from a ten year average of 13% to an incredibly high 74% while the percentage of mechanic valves decreased dramatically from a ten year average of 77% to an incredibly low 9% (all those numbers are for people less than 60 y.o.). You will find this information on the page whose link is given at point 1 and I would be happy if someone could confirm it somehow.
My guess is that this astounding shift happened not because the lifespan of bioprosthetic valves improved suddenly but, more probably, because the healthcare professionals (or maybe their patients) started to give more weight to their “life quality” criterion when choosing their valve prosthesis. If you are aware of another event that could have lead to this major shift please let me know.
On the other hand, you should take into consideration that a big percent of the people that opted for a bioprosthetic valve will start to take Coumadin® after their valve replacement surgery. However this is predicable for a minority of them even before the surgery, and for this reason the membership to this minority should be checked before making your valve choice. This minority includes persons with genetic mutations as factor V Leiden syndrome and/or activated protein C resistance.
5. Mechanic valve. I didn’t find yet enough information to be able to compare the best contenders that seem to be the On-X and the St. Jude Regent valves.

I would highly appreciate to have your feedback regarding my findings.

 

[Lynlw]

Hi gdfd,
You've been doing quite a bt of research and thinking about what you've read, that's really good.
as for
" Bioprosthetic valves. Often I found that their lifespan is limited for young people (less than 60 y.o.). However it seems that in 2002 the percentage of bioprosthetic valves used at The Cleveland Clinic Foundation shifted from a ten year average of 13% to an incredibly high 74% while the percentage of mechanic valves decreased dramatically from a ten year average of 77% to an incredibly low 9% (all those numbers are for people less than 60 y.o.). You will find this information on the page whose link is given at point 1 and I would be happy if someone could confirm it somehow.
My guess is that this astounding shift happened not because the lifespan of bioprosthetic valves improved suddenly but, more probably, because the healthcare professionals (or maybe their patients) started to give more weight to their ?life quality? criterion when choosing their valve prosthesis. If you are aware of another event that could have lead to this major shift please let me know."

I think a couple things play into that. One would be with the anticalcification tech they are using on the newer bovine valves , they should last longer (the last generation before the new treatment ,is at about 80-90% still implanted at 18 years, this is in patients above 60, I know it is "less" but not sure what "less" really means in terms of years in younger people. I've looked for that for years and can never get a good answer.
The other thing I think that plays a role in Cleveland and other centers using more tissue valves, is they are getting better at operating on redos and I believe the success rate for a 2nd surgery isn't that far off from a first.
As for still might needing coumadin if you go tissue, I'm not really sure it is a "big percentage" they did an admittedly nonscientifc poll here once of tissue patients that were on Coumadin (after the intitially time period some surgeons put all their patients on and the number here was quite small.

As for the Ross procedure, BAV patients have to be really carefull their docs are experts, some have tissue problems that make the ross not last very long.So you have to be a really good candidate for it (and of course have a very experienced surgeon)
Lyn

 

[Phyllis]

Hi everyone! I recently found this site and I have spent lots of time searching through old posts and I've learned a lot!

About me: I'm 25 years old with a BAV + Aortic aneurysm. I've had the usual slew of tests done: Echo, CT, and just had the cardiac cath performed yesterday (that was TONS of fun. ) I visited several surgeons and decided to have surgery with Dr. Beaver next month at the University of Florida (Shands Hospital.) Dr. Beaver is very nice and he explained all of the possible options available. One option in particular that caught my attention is repairing the valve. I have read that repairing bicuspid valves is rather new and not common. He explained that he has successfully repaired these valves and the patients are doing well. He also said the valve will be tested immediately following the repair, and if it is not operating up to spec then it will be replaced with the valve of my choice. I just wanted to get some feedback on this, as it's not exactly a topic with tons of information readily available. Has anyone on this forum had their bicuspid valve repaired?

Thanks!

Just found this thread and added you to the calendar- won't be long before you start your new healthy life!

 

[AJ Golf]

Don't Know What One I'll Get

Don't Know What One I'll Get

Being that I am 44 and in relatively good health (of course, except for this darn valve thing), the cardiologist says mechanical; the surgeon says your choice; and I say

I had hoped to be a Ross Procedure candidate, but the main concern with a BAV, is that the PV could be bad as well. As is well documented, doing a RP for one bad valve can result into 2 bad valves. I had done some research on this procedure because:

1. I don't want to take coumadin
2. I wanted to stay as "human as possible" (I know, it's silly)
3. I don't want to take coumadin
4. Did I mention, I don't want to take coumadin

Anyway, I never got to speak with any surgeon who was very educated on the RP. My current surgeon even used the "one bad valve into 2 bad valves" scenario. Even at my age, he stated that I could be a good candidate for the tissue valve. I have another appointment with him this week and we'll get more details, but of course I don't have alot of time to contemplate this or that - my surgery is scheduled for Aug. 31

I'll let everyone know how the next visit goes ...