Aortic valve replacement questions

[djexec]

Im very much a newbie on the VR.com forum so I will begin by telling you all a little about myself & my condition. I am a 36yr old very active male who was diagnosed 6 years ago with an aneurysm on my ascending aeorta measuring 5.2 cm as well as a bi-cuspid aeortic valve. My father had the same conditions and underwent OHS at age 65. He opted for the St. Judes valve.
Since learning of my conditions, I have been going for regular checkups every 6 months. The aneurysm has not increased at all in size BUT as of my most recent visit, I was told that the parameters under which they now recommend surgery have changed. Whereas for the past 5.5 years I was told that once my aneurysm reached 5.5 cm they would recommend operating, I was told a month ago that it has now changed to 5.0 cm and therefore they are suggesting that I have surgery very soon. If I must have surgery sooner rather than later, I am shooting for mid November '05. My questions are as follows:
1. If my aeortic valve is operating ok at present with little to no insufficiency, can I just have the aneurysm fixed & wait on the valve?
2. If I can wait on having the valve replaced, is there safe minimially invasive technique to repair the aneurysm as opposed to traditional ohs?
3. I have read most of the postings on the arguments for each type of valve replacement and I must say that they were very helpful. I am leaning towards a tissue versus mechanical mainly because of my own perceived quality of life issues but I welcome any further comments to this decision.

Lastly, thank you to everyone who has taken the time to post information on this forum it has been an incredibly valuable resource to me!

Deane

 

[Ross]

Hi Deane and welcome

I have never heard of a surgeon yet simply fixing one issue and leaving the other be, so that answer is no. You would not want to go through this more then once if it can be helped at all. At your age, I would suggest mechanical for the very reason I just cited. Multiple reops are increasing your chances of mortality and morbidity. I'm not saying it can't be done, but life is life, why gamble it away?

I'll tell you, being on Coumadin hasn't affected my quality of life one bit other then the inconveniences of testing and bridging for other surgeries. To me, it's a none issue. Some cannot live that way, so please rest assured that whatever you choose, it's your choice. A choice is better then none! If you do nothing, well.........Very bad choice, you won't be here long.

 

[Tom F.]

I have actually read about bicuspid vallves being repaired, but other than Dr. Tyronne David in Canada I do not know who does that. That is very cutting edge stuff. And since you have the aneurysm, you are going to have to be cut down the chest, I have never heard of any other way to replace a section of the aorta. At your age I would however at least consider a Ross Procedure as one alternative to the value replacement.

 

[PJmomrunner]

operating ok at present with little to no insufficiency

I don't see why a surgeon would want to replace a functioning aortic valve. If "little to no" is the same as trace, that's normal. Your valve may function fine for the rest of your life--most bicuspid valves do. We tend only to hear about the bad ones here (afterall it's "valvereplacement.com" ).

 

[aussigal]

another new face to WELCOME ...Hi i am pretty new here too...

I had my Bicuspid aortic valve discovered at the age of 36 ...was told by the cardioligist that it was in good condition and that I would need a review in 5 years and prophylactic antibiotics...and some blood pressure pills to keep the BP under control.
I then left his office and went back to Life!...2 years later my body began to feel the effects of age...thought I was imaging it so ognored that fpr a while

fast forward to october 2005....have been having Angina, shortness of breath, back pains and a few dizzy/nausea spells for no particular reason. On a Mission I went internet surfing and found the Bicuspid foundation and VR.com where I have learnt more than my doctors ever told me
as you can see by the sig.line below...my lil own valve is no-longer a happy-camper and theres an aneurysm that was not there 5 years ago. My dad dies of this at 48 and also his dad in his early 50's . way back before they scanned for these with echo's...

you may notice as I did many of us are around the same age...I do not believe this is a coincidence..from my research these things tend to work fine for a good half of our lives then begin to fail in our 40's.

I wonder...with your family history of this is there isnt some reason that you dad has the St. Jude...a very popular choice by the way!...have you all been tested for Marfan's ? are you hypermobile? there are some things that help make the decision for you
Me I dont like pork... so I am opting for a mechanical when I get my turn.
there are some other athletic-types here too they will offer their thoughts on this as well..

so once again welcome to this wonderful family.

 

[djexec]

Thank you all for a quick response & for the questions that I need to be asking. I have been tested for Marfans & it appears that I dont suffer from this disease. I had a soft tissue MRI yesterday and will be meeting with my cardiologist 10-22. Still wavering between valve options but like a couple of you said...any VR choice is a good one! Honestly, I am not too terribly freaked out about surgery...perhaps because I've had 6 years to contemplate it or perhaps because I firmly believe that God has things under control. I suspect I will encounter some trepidation as November approaches but I will just spend a little more time in here with you guys & a little more time praying. FOR NOW, THANK YOU ALL FOR YOUR POSTS & KEEPING THIS SITE UP!
Deane

 

[jitojo]

Hi Deane!

I was on your same boat. No symptoms, 5 cm aneurysm (was measured at 5.5cm on the table). I had a chat with my surgeon and ask him to please spare my valve as long as he thought I could get 10 good years out if it. I don?t mine repeating the operation in 10 years - by then I bet is less invasive and painful. The surgeon won?t know if the spare is possible until he is in there and checks your sinuses so have a backup plan.

Wish you the best!

Jito

 

[ALCapshaw2]

Welcome aboard Deane !

My understanding, from reading posts here on VR.com, is that it is quite common for aneurisms to accompany BAV and that the reason is that BAV is 'some sort of tissue disorder' that also affects the aorta. You can find LOTS of posts on BAV through the SEARCH function at the top of the page.

Bottom Line: It is best to FIX BOTH Problems at the same time and that a full sternum cut is the best way for your surgeon to 'get in there' to do whatever needs to be done. Sorry about that. But don't fret too much, most of us have "been there, done that" and are here to tell about it.

It would be a good idea to be sure your surgeon has LOTS of experience with BAV and aneurism repair. Generally, SOONER is BETTER when it comes to fixing problems that cannot be fixed any other way (and BAV / aneurism IS in that category). To my mind, waiting once you know you need surgery only increases the risk of further damage to your heart which may compromise your recovery.

Not to scare you, but some of our members have had aneurisms burst at less than 5.0 cm, including our moderator Ross, so you have definitely been BLESSED to make it 6 years at 5.5! My recommendation: Get your aneurism repaired and replace your valve as soon as you can schedule it.

You may find it helpful to review the Valve Selection Forum and look at the latest generation Mechanical Valves (On-X, ATS, St. Jude Regent) which claim to have less turbulence and a lower probability of clot formation. You will still need anti-coagulation, but perhaps less. There is a European study evaluation aspirin only therapy with the On-X valve so that may be an option in time.

Whatever valve you choose, be sure to find a surgeon who is familiar with that choice, and also be sure to have a 'second choice', just in case the first one is not feasible once he 'gets inside'.

Best wishes,

'AL Capshaw'

 

[momshell7]

I suggest that you really do you homework on tissue vs. mechanical valves. First off tissue really do not last long vs a mechanical which will last forever. There are many myths about mechanical so find the facts.

It is a myth that mechanical valves with last forever. They have, for the most part, a longer lifespan than a tissue valve. However Nothing last forever. There have been many people who have had their mechanical valves replaced. You just never know.

That being said, I also suggest you research the different valves. If the decision was easy and there was truly one valve that was superior then there probably wouldn't be other choices available. The valve that is the best choice for one person may be the wrong choice for the next person. Only you can decide which valve is best for you. My husband had his valve replaced last October. He got the stentless porcine valve. His surgeon and cardiologist both refer to it as the mercedes benz of valves. It is their opinion that this valve is the best currently available.

You have to be comfortable with the valve you choose so research the valves as much as you can before making a decision.

My husbands name on here is twoboysdad. If you want to ask him any specific questions feel free to email him. He is now 37 and had his aortic valve and root replaced.

Welcome to the site!!
Michelle

 

[CCRN]

Might have been mistaken but........

Might have been mistaken but........

Hi Deane and welcome

I have never heard of a surgeon yet simply fixing one issue and leaving the other be, so that answer is no. You would not want to go through this more then once if it can be helped at all. At your age, I would suggest mechanical for the very reason I just cited. Multiple reops are increasing your chances of mortality and morbidity. I'm not saying it can't be done, but life is life, why gamble it away?

I'll tell you, being on Coumadin hasn't affected my quality of life one bit other then the inconveniences of testing and bridging for other surgeries. To me, it's a none issue. Some cannot live that way, so please rest assured that whatever you choose, it's your choice. A choice is better then none! If you do nothing, well.........Very bad choice, you won't be here long.

Didn't Eric just have his aorta replaced since his bicuspid valve was functioning fine? One way to look at it is if you want to be off coumadin is either you get the aneurysm fixed and replace the valve with with a tissue prothesis and probably have another replacement in 8-12 years OR fix the aneurysm and leave the functioning valve and maybe reop in 8-12 years, or 20 years, or never have to have the valve replacement at all. Believe it or not, these are all possible scenarios. Any way you take it you just need to get a surgeon you trust and feel is on the some page of thought as you. I had a very hard time psychologically pre-op and am glad my surgeon went ahead and decided to use a mechanical valve conduit. I don't think I could mentally survive that waiting period again. I agree with Ross......A choice is better than none. Quite frankly, Toprol has given me more grief in my post-op life than Coumadin. Hope this helps and best wishes for your good health.

 

[CCRN]

Hey

I just looked up Eric's profile and it states he did only have his aneurysm repaired. Might want to email him for his thoughts.

 

[RCB]

Myth vs Fact

Myth vs Fact

It is a myth that mechanical valves with last forever. They have, for the most part, a longer lifespan than a tissue valve. However Nothing last forever. There have been many people who have had their mechanical valves replaced. You just never know.

Michelle

While it is true nothing lasts "forever", mechanical valves DON'T WEAR OUT.
People have their valves replaced for many reasons, but I have never heard of a single case study of a valve being replaced because it wore out. Most are replaced due to vegetation, clots, endocarditis or paravalvular leaks, etc. This can happen with mechanical as well as tissue valves.
I seen a number of case studies where mech. valves have been explanted "while were in here fixing something else" and the reason was for improved blood
flow not wear. In the case studies where they do examine the old mech. valve, often the surgeons remarks at how LITTLE wear there is on the valve.

 

[BAV Pt's daughter]

Bottom Line: It is best to FIX BOTH Problems at the same time and that a full sternum cut is the best way for your surgeon to 'get in there' to do whatever needs to be done. . .
It would be a good idea to be sure your surgeon has LOTS of experience with BAV and aneurism repair. Generally, SOONER is BETTER when it comes to fixing problems that cannot be fixed any other way (and BAV / aneurism IS in that category). To my mind, waiting once you know you need surgery only increases the risk of further damage to your heart which may compromise your recovery. . .

I have to agree with Al on this issue. I cannot imagine knowing you have two problems but only "fixing" one with the first surgery. In my mind, you already know you will eventually need VR anyway, just get it done while your aneurysm is being repaired. That will at least eliminate the great risk of undergoing surgery as a whole a second time. My mom is facing VR and aneurysm repair 10/24 for BAV as well, and I could not imagine going through this twice, but she doesnt really have a choice anyway. Seriously consider both mechanical and tissue valves. Mechanical do not wear out. Tissue valves do, but hopefully by the time it would wear out, they will have perfected the replacement of them without another OHS (via the groin instead) as has also been suggested to my mom.
Anyway, welcome, and best of luck to you as well!! Keep us updated.

 

[Lilpep25]

Poor Choices

Poor Choices

I am not sure which one of my choices was the "poor choice" but all together, everything adds up to needing another surgery.

My first surgery was done by Dr. William Ryan of Dallas at Presby. I was told that the Ross (using the pulmonary valve for aorta and a donor for the pulmoary) procedure was extremely successful and the best choice for a woman of 25 wanting children. According to a surgeon in Nashville (where I now live), 1 in 3 of these procedures fail because the human donor valves are not properly stored. I have not found documentation to back this up yet, but it is something that would have affected my decision. Mine is currently failing, and I will need to have it replaced. I do have one huge problem to accompany this, I am pregnant. The doctors are monitoring me month by month to see if I can handle carrying the baby to the 8th month. I am currently in the 3rd month. When I have my 3rd open heart surgery, I think I will be using the pig valve. I would really like to hear from people who have gone 10+ years with this option.

I am grateful to have such caring and attentive Drs. in Nashville. During my last surgery, I was sent home despite the fact that I had a low grade fever. I was given no anti-biotics. I called the assisting surgeon (Roughneen) who was closer to my house and informed him that I could not breathe at all. He decided that I was having an anxiety attack and called in zanex. After taking zanex I decided I still could'nt breathe and he made an appointment for me the next day. My left lung was 75% full of fluid. I had the fluid drained, however, this was unsuccessful and a week later I was in the ER. I had developed Empyema which is a rare lung disease similar to Emphysema. I was forced to have surgery to remove the fluid that had solidified in my lungs. I no longer care how a hospital or it's staff feel about me staying extra time in a hospital. If I have a fever and think I need to be monitored after major surgery... I will remain until I am clear of all infection. I will also demand that the Dr. send me home with plenty of anti-biotics.

 

[BAV Pt's daughter]

... I no longer care how a hospital or it's staff feel about me staying extra time in a hospital. If I have a fever and think I need to be monitored after major surgery... I will remain until I am clear of all infection. I will also demand that the Dr. send me home with plenty of anti-biotics.

NEVER leave the hospital after a major surgery with a fever!! They need to get this under control before sending you home. I cant believe they let you go! As far as going home with antibiotics, your docs may vary on their opinion of these without signs of infection if none are present. Taking antibiotics when they are not needed can build a resistance to the drug, should infection set in, making it harder to treat down the road. However, with such invasive surgery, most docs will put you on "prophylactic" antibiotics IV in the hospital. I think it would vary between docs about going home on them though. If you have ANY signs of infection at all, please do not let them send you home until they have resolved the problem. Dont be shy!!! (The docs never are, anyway, so why should you be?)

 

[Mary]

NEVER leave the hospital after a major surgery with a fever!! They need to get this under control before sending you home. I cant believe they let you go! As far as going home with antibiotics, your docs may vary on their opinion of these without signs of infection if none are present. Taking antibiotics when they are not needed can build a resistance to the drug, should infection set in, making it harder to treat down the road. However, with such invasive surgery, most docs will put you on "prophylactic" antibiotics IV in the hospital. I think it would vary between docs about going home on them though. If you have ANY signs of infection at all, please do not let them send you home until they have resolved the problem. Dont be shy!!! (The docs never are, anyway, so why should you be?)

I don't think this issue is as clear cut as it seems to you. Most members report having a low grade fever at the time of discharge from the hospital, and many will run a fever for a week or so after returning home. It is a common occurrence and it is addressed on the discharge sheet.

Secondly, insurance considerations frequently dictate how long a patient will
remain hospitalized. Any days beyond the "normal amount" have to be justified and certified with the insurance provider. I had surgery on Tuesday afternoon. Friday morning my surgeon made rounds and said I could go home on Saturday, but considering the distance I had to travel, I could remain until Sunday if I wanted to. I chose to stay the extra day before I felt I needed it, but we had to jump through hoops later to get it approved for payment.

Some things that are taken for granted in normal nursing care fall by the wayside when you actually experience valve replacement surgery. It is a much different arena.

 

[BAV Pt's daughter]

I don't think this issue is as clear cut as it seems to you. Most members report having a low grade fever at the time of discharge from the hospital, and many will run a fever for a week or so after returning home. It is a common occurrence and it is addressed on the discharge sheet.
QUOTE]
Sorry, I guess I wasnt clear on my intent there. I was referring to leaving the hospital with a fever without the doc knowing or treating it. My mind is quite frazzled right now. I do understand about insurance companies limiting hosptial stays as well. But thanks for clearing that up. Sorry for the confusion.

 

[Mary]

Angela,
You've got every reason in the world to be frazzled right now! You're doing double duty in the waiting arena, and I admire you for it.
Mary

 

[BAV Pt's daughter]

Angela,
You've got every reason in the world to be frazzled right now! You're doing double duty in the waiting arena, and I admire you for it.
Mary

Thanks Mary!! Just trying to keep it together and pack what I think we'll need, so far away from home. . . I dont want to have to run to the store 500 times. We're getting there, though, just a week now... Thanks again.

 

[ALCapshaw2]

OK, curiosity has gotten the best of me...

Angela, why are you and your mother going to Cedars Sinai in Los Angeles CA when the #3 ranked Heart Hospital (DUKE) is in your own backyard?

'AL Capshaw'