Newest Opinion

[7tonemonte]

Well I saw my surgeon on tuesday, Dr Goldman at Lankenau hospital. My original cardiologist, Dr Ferrarri, said for me to get my bicuspid aortic valve replaced ASAP due to severe regurgitation! My second opinion cardiologist,Dr Laporte,(the one I trust most) told me that it did need replaced but it wasnt as urgent as the first one said.I went to the surgeon to discuss it and he told me to repair it! Im sure Im not the only one on the roller coaster here but how do 3 people looking at the same results come up with 3 totally different answers? All 3 were using the results from Dr Ferrarri's test so its not like they are getting different tests to read. I have gotten alot of info here on VR.com and I have definately learned alot in the last 2 months. I went from in total shock and after I heard the 1st report I actually felt weak and sick. The 2nd report I was feeling better, and now I feel great!! I should go for 1 more than run a marathon! I have to go for a stress echo and then the surgeon will make a determination on whether to do this soon or let it ride for a while because Im not really feeling any "symptoms" at this time. Opinions anyone??
Tony

 

[Phyllis]

The surgeon's opinion is the one that counts and it doesn't hurt to get more than one surgeon's opinion.

 

[Ross]

Get the surgeons opinion and go from there. Just because your not feeling any symptoms, doesn't mean that your not in danger. You want this fixed before permanent damage happens, not afterwards.

 

[marky]

Cardiologists are generally more conservative.
I agree with the responses so far.. the surgeon is the one that counts!
For me, the first surgeon said lets do it now (3 weeks later I was under) the second opinion said.. "well I can give you meds to ease the symptoms and give you a few months" But he was not going to repair it either.. only replace.

My cardio told me I had 6mo or more..
When I had the surgery.. with the first.. he said it was MUCH worse than anticipated and I would not have made another 6mo.
So.. all that to say.. feel good with your surgeon.. and go with his opinion..
and keep us posted!!

Take a deep breath and trust your surgeon and your gut feeling.. It will all be ok.

 

[Mary]

Aortic valves are typically harder to repair than mitral valves.
How many bicuspid aortic valves has your surgeon repaired?
I would also be concerned about getting a stress test at this point.
If the consensus is you're going to need surgery, why subject yourself to a potentially risky stress test?
I know, I've given you more questions than answers.
Sorry!

 

[7tonemonte]

Thanks Mary, but I am getting used to more questions than answers. Thats all Ive been getting for about 2 months now. I almost wish someone would just tell me " Do this and thats final!" I hate making important decisions on my own Thanks to everyone so far for the input.
Tony

 

[temp69]

Tony:

How old are you? I just had an On-X valve put in and I, too wasn't having terrible symptoms and was in the gray area. Bottom line, I didn't want to wait around while my aneurym grew and left ventricle swelled.

one Dr. told me to walk on treadmill one hour a day and wait.
another said I was on the "cusp" of having to have it done.
another said I could wait, but then I had a CT scan which showed aneurysm at 5.1 -- and the last cardiologist said I should have it done, "within a year."

Well, waiting around, wondering, it just wasn't for me. If it's inevitable, why not just get it over with? The surgery is not totally without risk, but if you look at the numbers, it's pretty darn safe.

Good luck, and whatever you decide we'll support you!

temp69

 

[Guest]

I almost wish someone would just tell me " Do this and thats final!"

Do it NOW.

How's that for a decision?




Seriously, tho, Tony, glad you finally posted. I hadn't seen you post here for a while and, since I have seen you post over at FGMC, I was going to PM you tonight if I didn't see any new posts here from ya ... because I was wondering how your appointment went .

As the others have said, the surgeon's opinion is the one you want. And, get a couple, if you can.

And, I, too, would rather see you get it done now ... rather than later ... because you never know how bad it really is until the surgeon gets you opened up.

Whatever you and the surgeon decide ... you have our support .



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"How do we explain something that took us by surprise?" ... Richard Marx ... 'Hold Onto The Nights'

 

[tobagotwo]

Use the search function (advanced) too look up prior threads about repair of Aortic valves. It's a tough operation even for very experienced surgeons and doesn't have the best odds.

I am often found on the soapbox about stress tests for valve patients, particularly symptomatic ones. Unless your case is extremely unusual and involves more than the valve and/or aneurysms, stress tests tend to provide very little useful information at this stage of the game, and there is risk to the patient. It's less in AR than AS, but still significant and generally nearly as pointless. Consider a second opinion as to whether the stress test is of any value now. Advance Search on Stress Test with username Tobagotwo for some related rantings. A stress test is absolutely not required to determine whether you need the surgery or the timing of it.

I agree with the surgeon on earlier timing, but I would consider the repair option very carefully on the aortic valve. Also find out how many this surgeon has done and how often. This is a gamble, as a high percentage fail. That results in another full surgery, this time for replacement, and frequently within a couple of months of the first one.

Best wishes,

 

[aussigal]

I am another one who will say I wouldnt want you to go through the stress test.
I am also personally wary of repairing Bicuspid Aortic valves as I think they are made of the same dodgy tissue as those aortas that get aneurysms. The Bicuspid Foundation has some info. on that subject if I recall correctly. We most likely have people here on both sides of that argument...some repairs work and some dont.

Get yourself another opinion if you feel you want it...and go with the guys who you feel most comfortable with ie: the ones who you believe.

Good luck we are here to support you no matter what you chose.

 

[ALCapshaw2]

I too am in the "Be Wary of Bicuspid Aortic Valve Repair" Camp.

My recommendation is to seek yet another opinion from a Surgeon with LOTS of experience with BICUSPID VALVES.

As has already been said, Aortic Valve Repair is NOT highly successful, even for 'normal' (tricuspid) valves. Throw in a Bicuspid Valve and my alarm bells start ringing. I've never heard of repairing a Bicuspid Aortic Valve. I would really want to know the stats on any surgeon who suggests this approach.

Before undergoing a Stress Test, I would ask what the prescribing Doctor hopes to learn from that test and what are the RISKS to a Bicuspid Aortic Valve Patient? I seem to recall some discussion that Stress Tests are CONTRAINDICATED for Aortic Valve Disease. Check it out!

You probably don't need to see any more Cardiologists.
Their job is to DIAGNOSE your condition. The SURGEONS are the experts on Valves, and you need to see one with expertise in your specific condition.

'AL Capshaw'

 

[dwb71]

I am on that coaster with you. One cardio from CCF said its time to go in. The surgeon's assistant was pushing me forward to the OR with equal aggression. After the angiogram, where they discovered that in addition to the bad valve my aorta was dilated to 4.5cm, I met with the surgeon. His opinion was I did not need to go in immediately. My GP felt the same. My regular cardio was indifferent - "if you feel the symptoms, get it done." The third cardio - and tiebreaker - told me it was very aggressive to push me into surgery based on my numbers. That same evening, I happened to see my sister's father-in-law, who a few years back had to have emergency valve surgery. It caught him by surprise because his numbers did not indicate it was an emergency situation. He was 83 yrs old at the time. His cardio just so happened to be the tie breaker I met earlier in the day. In my opinion there is a fair amount of art in the science of cardiothoracic medicine. This VR site is great at helping us look at the percentages, and it is these along with our gut, that will tell us what to do. Let's hope we guess right.

 

[Karlynn]

It kind of makes me a little nuts when doctors say to wait until you are having symptoms. Some people do not have symptoms and have pretty bad valves and aortas. We have many members here who had no symptoms. (Wish I had been one of them, but mine was the opposite problem - a ton a symptoms and moderate #'s.)

Numbers are a good benchmark to go by. But sometimes the situation is worse than what the numbers actually show and they don't see it until they actually get to the surgery. Many people have heard "It was a lot worse than we thought." I don't recall anyone reporting "It wasn't as bad as we thought." (But then doctors may not admit that, makes it look like they rushed to fast to surgery.)

It's really tough to know what to do when you are getting such differing opinions.

 

[mntbiker]

I don't recall anyone reporting "It wasn't as bad as we thought."

ME, ME, ME! Specifically addressing the ascending aorta. It had gone from "normal measurements" to 4..4cm in 3 months and then to 4.9cm just 7 months later. Cardioligist called surgeon and surgeon scheduled an appointment right away and of course said we needed to get this done. Turns out once he got in there he found the tissue was thicker then normal and healthy and he didn't think anything needed to be done with it. Of course both my wife and I felt like he was trying to convince himself it was the right choice.

But my valve itself was worse then thought and I also had LVH, PH and CHF to go with it.

Trying to decide when to go is a very difficult decision. You need to find the cardioligist and surgeon you trust the most. I believe if both of them agree it's time it truly is.

 

[7tonemonte]

Thanks for all the replies so far. If nothing else, you all are giving me some good questions to ask. Im am extremely glad Cort turned me on to the site, Beings Ive never been through any of this before you have opened my eyes up to a TON of questions to ask the doctors. If I would have just went with the original opinion I would have probably been recovering now (which might not have been so bad!) But I do feel better now that I am a little better informed of the procedures and complications. Also the surgeon is pretty set against any mechanical valve. He uses porcein. I was leaning towards mechanical when and if I had the surgery, but thats another topic for another time. I am trying to knock off 1 thing at a time I guess for right now. The more I think about it the more of a headache I get. I thank everyone so far for any advice and Im kind of using the good people on this site as another "opinion." Keep any suggestions coming and Ill keep everyone posted.
Tony

 

[ALCapshaw2]

Also the surgeon is pretty set against any mechanical valve. He uses porcein. I was leaning towards mechanical when and if I had the surgery, but thats another topic for another time.
Tony

WHOA Tony!

Which surgeon are you refering to here?
And what kind of porcine valve does he use?

There are some 'improved' procine valves but
plain old 'porcine valves' straight from the pig
have the SHORTEST LONGEVITY of ANY valve
(typically less than 10 years), not to mention
that the younger you are, the faster ALL tissue
valves deteriorate. Tissue valve deterioration
tends to level off after age 60.

I've never said this publicly before, but one surgeon
I know told me that he considers implanting
ordinary porcine valves to border on MALPRACTICE.

It would seem to me that any surgeon who stated
that he ONLY used Porcine Valves is telling you
that he does NOT have much Valve Experience.
I would expect the GOOD surgeons to be familiar
with several different types of valves to best
meet your specific needs and desires.

IMHO, you REALLY need to see a Surgeon who
specializes in (or at least has LOTS of experience with)
Bicuspid Aortic Valves and Aortic Aneurism Repair (and
the connective tissue disorder that frequently accompanies those disorders). Your situation goes WAY beyond 'Simple Replacement Surgery'.

The Cleveland Clinic is next door to Pennsylvania and is the #1 rated Heart Hospital so I would suggest going there for your next opinion, or at least sending all of your test data and tapes to them for their 'on line' second opinion service (around $500 or so???... see their website).

I would NOT go to any 'local hospital' that just happens to do Heart Surgery (which usually means mostly Bypass Surgery and an occasional simple Valve Job). FWIW, I had bypass surgery at my local hospital and it came out fine but when I needed AVR, I went to the Best Hospital in my State which was ranked #13 in the country at the time).

'AL Capshaw'

 

[Karlynn]

Yah, I wasn't going to say anything either, but your statement about your surgeon being against any mechanical valve and only using porcine valves sends up huge flares for me.

True, most surgeons have their favorite, but the good surgeons also know that valve replacement isn't a "one size (or type) fits all" procedure and a valve that may work well for one person's life, may be the worst choice for another's.

I would definitely seek out another surgeon's opinion. Plus, you will want to do your own sleuthing of information in order to decide which valve type is best for you and your life.

You probably wouldn't take your Monte Carlo to a mechanic who says they only use Ford Escort parts. Ford Escort parts work well on Ford Escorts, but I'm guessing not as well on Monte Carlos.

 

[Guest]

Im am extremely glad Cort turned me on to the site, Beings Ive never been through any of this before you have opened my eyes up to a TON of questions to ask the doctors.

I'm glad, too .

I can imagine what a scary headache this all must be for you. But, just keep in mind that most of us here have gone through this ... some of us SEVERAL times (myself included, as you know) ... and it isn't that bad . Well, at least not in most cases....

*sighs*

And, yes, one step/decision at a time. It's a lot to take in for "newbies" .

I've never said this publicly before, but one surgeon
I know told me that he considers implanting ordinary porcine valves to border on MALPRACTICE.

*raises eyebrow sharply*

Yikes. All 3 of my open heart surgeries have been done with porcine valves (tho, not sure they were ordinary ones). Still ... this is a bit unsettling.

You probably wouldn't take your Monte Carlo to a mechanic who says they only use Ford Escort parts. Ford Escort parts work well on Ford Escorts, but I'm guessing not as well on Monte Carlos.

*chuckles*

Why, Karlynn, I didn't know you were such a car fanatic . He he he.

But, yes, Ford Escort parts won't work well on a Monte Carlo. Well, at least, I wouldn't recommend trying.....

Ya know, us Chicago area people need to get together again. That outing at Fermilab was so fun. Even better since the group pic we took was in front of my '87 MC LS ... not that I'm biased at all .

 

[MrP]

My understanding is that repair of a bicuspid aortic valve is not a good idea....chances are high you'll need to have it replaced eventually. Why go through this awful surgery twice when you don't have to?

And mtnbiker, I don't understand why your surgeon elected not to resect your ascending aorta when the aneurysmal dilation is increasing. The notion that the aortic wall is thick enough to tolerate more dilation seems flat wrong....physics of an expanding aorta seem to contradict your surgeon's decision....sooner than later something has to give....sorry for being so blunt but you also need to strongly consider getting a few more opinions from surgeons with more experience....in my opinion.

Best of luck to you both.

 

[mntbiker]

And mtnbiker, ....sorry for being so blunt

Blunt is good, I can take it.

The surgeon I picked has lots of experience, great statisitics and I picked him based on his experience with Ross Procedures (my second choice) A repair was my first choice. A repair was ruled out as soon as he looked at the valve, ross was ruled out very quickly (he believed the Ross would fail) and he went with my next choice of tissue. He believes the aorta will hang in there until the valve has to be replaced. Only time will tell. There was a lot more to it then that, if you want PM me and I will share.