Got a second opinion & now I don't know what to do

[heyrebekah]

I was all set to go ahead and have surgery. I talked to 2 surgeons who agreed that it is time. One of those surgeons said that surgery is not immediately necessary, but since I would like to get pregnant I should have surgery now to avoid my aneurysm growing any larger and dissecting during pregnancy. The second surgeon said that I definitely need surgery now, even if pregnancy was out of the equation, just because of the combination of bicuspid valve and aneurysm. So based on that, I was all set to have my surgery on 4/28.

But then this week I went to another hospital for a second opinion. The first two surgeons were so definite about needing surgery, that I just went ahead and scheduled it, figuring I would probably hear the same thing from another surgeon. But I wanted another opinion anyway, just to sort of confirm what I decided.

But! I talked to a new cardiologist and surgeon the last 2 days and both of them were rather shocked that I was told not to get pregnant and said there is absolutely no need for surgery at this point. They said I should go ahead and pursue pregnancy and just be very closely monitored. But after a year of being told how dangerous it would be, I'm not sure I could do that. At least not without freaking out every single day, you know? I already had one miscarriage (completely unrelated) and if I get pregnant again I want it to be as low-risk as possible, as much as I can control. I kind of want to just get the surgery done and over with and move on with my life.

I'm going to try to talk to the first surgeon tomorrow and see what he has to say about the conflicting opinions. I'm just so confused. I've been going back and forth about it for the last 2 days.

 

[AgilityDog]

You say you've got severe regurg. I don't know how big the anyeurism is, or what symptoms you have, but the severe regurge is an indicator for surgery in and of itself. It can make you very tired, if nothing else. Do you want to go through pregnancy and raisie a child in that condition? I hear parenthood is exhausting.

Personally, I'd vote for the surgery. My regurge is only moderate, but I'd like to get my AVR over with, myself, even though it will be my second surgery, and it's never convenient.

I sooooo enjoyed the first one- NOT.

 

[heyrebekah]

Yeah, the regurgitation is part of my confusion. According to my MRIs it is severe and that is a big part of why the first surgeons want to operate. But it is only mild/moderate according to my echos, and that is what the other surgeons prefer to go by. Which to believe?

 

[ALCapshaw2]

Did you ask ALL of the surgeons you consulted with just how much experience they have with BAV and Connective Tissue Disorders? How many Aortic Aneurisms have they repaired? (Less than 100? Keep on Looking!)

Surgery of the Aorta is a Big Step Beyond "mere Valve Replacement" and my guess is that most "Heart Surgeons", especially those in local and even regional hospitals, do NOT do many surgeries of the Aorta. The most Experienced Aorta Surgeons are typically found at Major Heart Hospitals or University Hospitals.

You also need to be aware that BAV and CTD represents a very small percentage of Heart Patients. Typically, Valve Patients account for about 10% of the patients seen by Cardiologists. I would guess that BAV and CTD is a small percentage of that. So again, how many such patients does your neighborhood Cardiologist come across?

'AL Capshaw'

 

[heyrebekah]

Oh, and these are very experienced aorta surgeons at major hospitals. It would be much easier if it was the Cleveland Clinic versus County General or something.

 

[catwoman]

I went back and read through your posts. Seems that you have not yet had a heart cath or TEE.
Both of these tests will give more information than a regular echo. I've never had an MRI, so I can't compare an MRI to a TEE or heart cath.

What were all the surgeons and cardiologists basing their opinions on? One echo? Did they have a CD of it and the report of the results?

 

[heyrebekah]

What were all the surgeons and cardiologists basing their opinions on? One echo? Did they have a CD of it and the report of the results?

MRIs from 6/2008 and 1/2009, and echos from the same dates, plus the second hospital did their own echo on Monday.

They told me there is no need to do a cath before surgery because I am under 40 and low risk of coronary artery disease. But as I think more about it, I will ask tomorrow if there are other tests they can do to be more clear about the regurgitation. Thank you for bringing that up.

 

[David L]

Did you ask ALL of the surgeons you consulted with just how much experience they have with BAV and Connective Tissue Disorders? How many Aortic Aneurisms have they repaired? (Less than 100? Keep on Looking!)

Surgery of the Aorta is a Big Step Beyond "mere Valve Replacement" and my guess is that most "Heart Surgeons", especially those in local and even regional hospitals, do NOT do many surgeries of the Aorta. The most Experienced Aorta Surgeons are typically found at Major Heart Hospitals or University Hospitals.

You also need to be aware that BAV and CTD represents a very small percentage of Heart Patients. Typically, Valve Patients account for about 10% of the patients seen by Cardiologists. I would guess that BAV and CTD is a small percentage of that. So again, how many such patients does your neighborhood Cardiologist come across?

'AL Capshaw'

Well said my man! I had a 5.7cm ascending aorta and a severely leaking aorta valve. My local cardio wanted me to go to a local surgeon. I told him no way. I insisted on a university hospital where they had surgeons that did what I needed every day. I ended up at Stanford University with Dr. Scott Mitchell at my request because of his work with Marfans patients. I researched him on the internet. I had my surgery on August 5th of 08 and with a Medtronic Freestyle valve and ascending aorta. I didn't know until the 2nd day post op because I told my surgeon that I wanted a tissue valve and to use what he thought would be the best for my 68 year old 190# body. By all means go to a university hospital for this complicated surgery. I was 7 1/2 hours in surgery, and feel great today!!

 

[ctyguy]

Have you considered a 3rd opinion ? You mentioned C.C., they will allow you to send test results and have them reviewed without you having to go there in person.

 

[ccummins]

What is the size of your aneurysm?

 

[heyrebekah]

What is the size of your aneurysm?

Oh yeah, that might help. It is only 4.4 cm, which is not much compared to some on here, but I was told it is "large for a person of my size." I'm 5'4" (not all that tiny) but one surgeon said that height has a big impact on when to operate (and I've read that on the Cleveland Clinic site too) and another surgeon said that it is irrelevant and there's not enough data to support that claim. I guess there are just different philosophies about when to intervene, and I feel caught in the middle of a debate.

 

[ALCapshaw2]

Oh yeah, that might help. It is only 4.4 cm, which is not much compared to some on here, but I was told it is "large for a person of my size." I'm 5'4" (not all that tiny) but one surgeon said that height has a big impact on when to operate (and I've read that on the Cleveland Clinic site too) and another surgeon said that it is irrelevant and there's not enough data to support that claim. I guess there are just different philosophies about when to intervene, and I feel caught in the middle of a debate.

You just may be caught in the middle, which probably means that a good argument can be made for either case.

You could 'flip a coin', or just go with with what you WANT to do and feel perfectly justified.

Just be 'comfortable' with your decision and don't Question it.

 

[Eva]

I do not have an answer for you, but I'd like to share what my cardio/surgeon told me in 1992 when my aortic leak was still moderate and I had a trace of mitral leak: he advised me if I wanted to have children to do it fast, but accept the idea that I had to be in bed the last 3-4 months, as the burden will be too much on the heart which would deteriorate the situation fast.!! I did not do it...I even avoided getting married then.

Good luck with whatever you decide and keep us posted.

 

[COLLEEN S]

Well, the pregnancy issue complicates things. Consider this...a wise cardiologist once told me...there is a "window of opportunity" in which there is an optimal period of time to do the surgery. Sooner better than later. Why? Because 1. you can be a fast grower (your aneurysm) 2. there can be irreversible damage done to your heart the longer you wait. 3.The bigger the aneurysym the riskier the surgery. Food for thought. Oh yeah and Catwoman said, get a cath...I agree. I was only 37 on my first OHS and they did one just to make sure the arteries and vessels could handle the procedure.

 

[ccummins]

Good luck with your decision. Tough one while thinking of pregnancy. I can tell you that my aneurysm stayed at a max of 4.7cm for almost 2 years before tests indicated I hit that critical 5cm. My cardio (Bonow who is chief of cardiology at NMH) had me getting echos and MRI's every 6 months to monitor. BTW, I am 5'6" and size was never mentioned but who knows, it could have gone into the decision making. Good luck!

 

[deek]

My situation was different,being the Mitral Valve, but I can tell you THIS. I, too, sought several opionions and NO one got it right. Turns out that my situation was way more dire than anyone thought. All Cardiologists said that I DID NOT need surgery! Went to Cleveland Clinic, got surgical opinion from Dr. Tomislav...said I DID NOT need surgury...went to Dr. Bolling at the University of Michigan and he said I NEEDED surgery. Turns out, when he opened me up, even he was surprised by how bad it was. My Mitral Valve was 3 x's the size of a normal valve and severely leaking. He couldn't believe it! NONE of my tests, being numerous echos, TEE's indicated this. Having just gone through MVR 2 and half weeks ago, I'd do the surgery! Good luck with you decision and I pray you make the right one.

Dee

 

[kerri73]

Dee brings up a very good point - all the tests in the world won't tell the doctors exactly what to expect. Mine was the same way in '97 - once the dr cracked me open, he found so many issues and I ended up on the table for 8 hours while he fixed them all. They just didn't show up on echos and TEEs, caths, etc. Those tests give an idea, but aren't 100% accurate.

My doctors are very pro-getting it done before the damage is irreversible, and at your age, and with wanting to get pregnant, you're better off doing it sooner than later to ensure a long healthy life for you and your kids.

It never hurts to get another opinion just to confirm everything, if you're still uneasy with everything you're hearing so far.

Good luck!!
Kerri

 

[Megan]

Rebekah..here is something else to consider...its very possible that the pregnancy could put unwanted stress on the heart making the valve and anyurism grow worse thus necessitating surgery right after delivery. I know a woman this happened to and even 8 months post baby and surgery she still lamented not "being there" to hold and nurse her baby during those first few months because she was recovering fromsurgery. i also did lots of research and 2nd and third opinions..but for what its worth, my opinion is you are young, get the tissue valve, recover and then get pregnant! then you hopefully, god willing get another 10 years to have kids and be a mom just like i haave done... but just for full disclosure...now im facing my 4th ohs and i have 2 little boys 3 and 6 and im simply scared silly for their sake more than anything. but i have faith and im a fighter so im praying all will be fine and ill be climbing over and up many more mountains in this life! best of luck with your decision. whatever you decide it will be the right decision because its yours and you will believe in it.

one more thought..i also have been told caths and tee's are the better method of dx - i am 39 and just had my 4th cath so they could look at the coronaries to confirm they were healthy (which they were!) so im happy i can still ejoy my bacon egg and cheese sandwiches and steak! and the cath confirmed the echo dx.

ok i lied. another thought..do you go to an adult congenital heart clinic/cardiologist? i think you said it is congenital bav? is that right? here is the link to the acha clinic directory in chicago..looks lik northwestern and u chicago see the most patients --doesnt look like the details are complete on # of surgeries performed but as noted - this is an important fact you should take into consideration.

best
meg

http://achaheart.org/for_members/cl...h_range_achd_ops=null&submit=Filter+this+list

 

[heyrebekah]

Rebekah..here is something else to consider...its very possible that the pregnancy could put unwanted stress on the heart making the valve and anyurism grow worse thus necessitating surgery right after delivery. I know a woman this happened to and even 8 months post baby and surgery she still lamented not "being there" to hold and nurse her baby during those first few months because she was recovering fromsurgery.

That is my biggest fear. The doctors I talked to on Monday mentioned dealing with a case like that, but still said surgery wasn't necessary because that would be so rare and unlikely. But still, no matter how unlikely, I don't want to be the one it happens to.

I'm going on Wednesday to talk to my cardio again (who is on that list, BTW, thanks for that). Unfortunately my surgeon is out of town next week. I hope talking to the cardio is worthwhile because she tends to have more of a "wait and see" attitude herself.