Surgeon and Card Disagree on Surgery. Advice?

[LaughClown]

Ok, first I had the meeting with my cardiologist last wednesday and she said that my murmur had gotten better. In response to me saying how dizzy I had been feeling (not just after excersise) she reduced my lisinopril from 10-5mg. It has improved quite a bit too. My bp seems to stay around 135/70 now.
In response to me saying how dizzy and out of breath I have been this summer, she said that in about two months after my meds had stabilized I could take an exertion test on some cycle with me breathing into a mask to test how much oxygen Im using.
I went today to have a second opinion with a surgeon that works at the same hospital. He wanted to put me into surgery next month, even brought out a book to schedule me. I told him that I had to discuss it with my parents.
I called my parents and my mom basically said dont listen to the surgeon. She said surgeons are like mechanics, they just want to put people into surgery. She said that cardiologists are the real experts and since the two cardiologists Ive been working together with said it could wait that that was what I should listen to.
I originally intended to say that I should probably find a third opinion, but ended up just defending the surgeon's opinion. She said that if she thought there was any chance of risk that she would say otherwise, but that there was too huge a risk of infections in a hospital. I tried to explain how I was mainly worried that if I waited for strong enough signs for everyone to be happy that some damage could be irreversible. I also didnt want to be living with a time bomb over my head. My mom seemed to think that I was just using this all as a way to get out of a semester thats been difficult and was afraid of me never finishing school if i did it immediately. I think if sooner I could be recovered enough for spring.
The thing is I have pretty much decided to change my major which would make most of my classes (very hard ones) pointless to me. She thinks Im using ohs as an escapist tactic. Who knows, maybe I am. Until a year ago when I stabilized my bipoilar disorder school was periodic and Ive had to drop out before.
I dont know who to believe. There are two cardiologists and my parents saying I should wait and the surgeon and partly my logic saying sooner might be better. When my parents and I met with the Card in august and they told us I didnt need the surgery so soon like they thought, I wanted to make sure that I wasnt at risk and try and find if what I felt was symptoms, they just told me I wasnt symptomatic and all looked at me like I was faking or something. Maybe my symptoms werent strong enough to worry about, but they should have talked with me. It felt like I was in a room of people who didnt care. But there's two cards who agree and one surgeon.
The surgeon called my father who's a retired doctor and my mom said they basically agreed that the surgeon needed to talk to the card and come to some agreement. Id try and get another opinion, but my insurance coverage basically covers the hospital Ive been going to. Plus I imagine that if I go to a card he'll agree with my card, if a surgeon they'll agree with the surgeon.
Who do I listen to? I wish I could just forget about all of this crap. It would be nice to get it over with but I want my parents to agree with me and I dont know if my insurance will cover it if my card doesnt agree.Sorry this is really long, but its been a long hard day and Ive had all of this on my mind. I also have a really hard week of school ahead of me and looking for a job and its been hard to stay motivated. I wish I coud just forget about all of this and runaway to Africa.

Sorry for being so negative.

 

[JimL]

Your story adds further evidence that cardiologists "always" delay surgery, and surgeons "always" speed it up. The card's statement that your murmur had gotten better caught my attention. I've not heard of that before. Maybe the card's ears get worse... My murmur only got "better" when the mechanical valve was installed, now it clicks instead of murmuring.
There are numbers that are used to judge when it is time for surgery. such as the increasing size of a dilation or the decreasing area of a valve. Can you discuss with your card these numbers, or other specific ones, so that you can set a time for surgery? When the number reaches this point, then we'll do surgery.

 

[ALCapshaw2]

As Jim said, Cardiologists tend to want to postpone surgery as long as possible. This is OLD thinking that over emphasizes the surgical risk and under emphasizes the REAL possibility that PERMANENT IRREVERSIBLE DAMAGE can be done to the heart.

MANY of our members had NO SYMPTOMS when they had surgery, yet there hearts / valves were in bad shape. By the time some people become symptomatic, Permanent Damage has occurred to their heart muscles / walls.

Do you have copies of ALL of your echocardiogram test results? Look for Increasing Chamber Size and Decreasing Effective Valve Areas. Both of these trends indicate that the heart is working too hard to compensate and eventually will not be able to fully recover, even after a successful valve replacement. THAT is why surgeons like to operate SOONER rather than LATER.

FWIW, my cardiologist was hoping to get another 3 to 5 years out of my damaged valve. ONE year later I became even more symptomatic and I am convinced that I got to surgery "just in time".

IMHO, when it comes to valves, the SURGEONS are the EXPERTS. (Feel free to show this to your parents )

'AL Capshaw'

 

[marky]

I am sorry that you are having conflicting reports. I too have never heard of a murmer improving (without surgery )

I found my cardiologist more willing to want to wait a few months too, but.. IF the end result is the same.. Meaning if you will need surgery next month or 6months from now.. Why not just do it now while you are feeling well? YOUR recovery will be faster and you are less likely to have additional problems.

My cardio told me I had 6mo for surgery.. My surgeon told me I would NOT have made it 6mo.. who do I believe? Well the one who held my heart in his hand of course.

Yes it is true that surgeons say sugery..but that is what they do.. so they figure by the time you see them, you are ready to book the date. Also a surgeon is NOT going to recommend surgery on a healthy heart IYKWIM?

You will be better able to focus on school, when you have this behind you, and can comitt to a full semester, without the concern of impending surgery.
The college isn't going anywhere, why not take the time you need to be well and then pursue your education?
This of course is JMHO..for what it's worth.

I hope that you are able to come to a decision that you are happy with.
Btw..is a second opinion possible?

 

[DeWayne]

Cardiologists want to delay surgery? Wow, I wonder what happened to mine, when I saw her the first time she told me I needed surgery and it had to happen in the next 6 months. I ended up with it inside of 2 months from when she told me that. I was not symptamatic either. In fact up until she told me I was still weed whacking, carrying things and playing golf, pretty much doing what ever I wanted.

 

[hensylee]

I doubt that you would like Africa.

Since your father's a doctor, maybe he can bring the cardio and surgeon together somehow. He should maybe attend a meeting with the two of them and you should, too, if possible. Barring an independent opinion from someone not at all connected with these other two drs, I don't see what else there is to do. Naturally your parents are apprehensive - after all, you are their little child. If you were on your own, what would you do? Decide and then make your thoughts known. I wish you good luck.

 

[RandyL]

Cardiologists want to delay surgery? Wow, I wonder what happened to mine, when I saw her the first time she told me I needed surgery and it had to happen in the next 6 months. I ended up with it inside of 2 months from when she told me that. I was not symptamatic either. In fact up until she told me I was still weed whacking, carrying things and playing golf, pretty much doing what ever I wanted.

My Card went to school with DeWaynes Card. I went for a stress test, was sent to the hospital that day for a Cath and was told the next day by my Card you need surgery as soon as we can get it scheduled. O f courseI waited 3 months to get my mind right, find VR.com,pick a surgeon,pick a valve,etc.

 

[Mary]

I think Wayne and Randy's valve conditions must have been pretty severe for their cardiologists to recommend immediate surgery. There are valve replacement guidelines that discuss the timing of surgery "with" symptoms and "without". I imagine Wayne and Randy fell into the "without".

Typically, the posts we see on here reflect a collective VR experience that cardiologists wait while surgeons operate! I am thankful that I went with the surgeon's call (to operate in a week, if possible) rather than the cardiologist who maintained I could wait another six months.

Is it possible to ask the surgeon what numbers indicate to him that you need the replacement now rather than later?
Are you on your parents' healthcare plan?
How long will you have medical coverage?

These are some questions you might want to think about. Valve replacement is a hard, icky type surgery. You certainly don't want to rush into it, but if the surgeon has a compelling argument, I would go with his call.
Good luck and let us know what's going on.
Mary

 

[ALCapshaw2]

ANOTHER reason that the thinking has changed on WHEN to have surgery is the fact that while Heart Surgery is MAJOR Surgery, it has evolved to a Highly Refined Art with exceptional SUCCESS RATES.

For first time patients under the age of 60, the Morbidity and Mortality rates are under 2% (1% stroke risk, 1% fatality risk).

For patients with known valve deterioration, the risk from doing NOTHING is 100% FATAL. That should put things into perspective!

Cardiologists are beginning to 'get the message' that SOONER is BETTER, but it takes time for the word to spread, especially to cardiologists who were trained under the 'old thinking'.

 

[mtkayak]

My Card and Surgeon both agreed I needed surgery. And that I needed it within 3 months or so. They caught it in the nick of time since my murmur was loud and my heart was very enlarged. It seems that surgery is inevitable for you. So my agruement is always sooner than later. Luckily it was convenient for me to get mine done sooner since work was slow for me and it was late winter. Having said that, I would still seek a third opinion. Maybe if you could get a letter from your Card and a letter from your Surgeon that state the difference in opinion, then maybe your insurance might cover it. Just a thought.

 

[Karlynn]

I'm sorry things have become so confusing for you.

While your Mom's statement - that surgeons just like to operate, is a widely held belief I think many of us here have a different opinion of cardio-thoracic surgeons. Maybe this is because they don't want to cut into a heart that is functioning alright. There was a time when it was unheard of to operate on the heart, then Dr. Blalock changed that and most of us here are alive because he went against a widely held belief.

I had a few doctors who felt I was blowing my symptom out of proportion because they looked at my age and just didn't think people my age had heart problems. If you have a surgeon looking at your test results and saying you need surgery, my opinion would be to trust that. I'm also wondering if your Mom and Dad might be in a little bit of denial and you happen to have a very conservative (typical) cardio to back them up.

Best wishes.

 

[pipersmith]

Try not to worry ;0)

Try not to worry ;0)

I am sympathetic to your confusion and anxiety. Each challenge that you face is difficult on it's own - without the consideration of OHS. Here are the things that I would consider:

regardless of when you schedule - you WILL have to have the surgery. That takes a bit of pressure off of scheduling - because there is no penalty for operating early.

there can indeed be a penalty in operating LATE, as your heart can be DAMAGED

school does not have a deadline. I will graduate this year, at 34, and most of my classmates are older than I. It sounds from your post that your heart is not in school at this time - and that is ok. Attending classes can be a joy - or a drag. There is no sense in doing it - if you are not getting what you can out of it. It is expensive - in time and money. It is for YOU, not your MOM. (and I say that as a mom with sincere hopes of my kids graduating from college) You will enjoy it more - and get more out of it if you go when you are ready!!!

Please do not frustrate yourself beyond measure worrying. Do what is in your heart. I know that they all care about you - but you are the one that has to live with your decisions - not the doctors and not your parents. Extreme worry will only impede your progress - health and academic.

One more thing - I really think that you have symptoms. Please do not ignore the possibility that the dizziness and shortness of breath are not from the meds - but from your heart.

I can think of no better informed group from which to find support - I hope that you find some confort in that you are not alone!!

 

[Marguerite53]

All good answers. I particularly like the sound of Ann (Hensylee) and Mary, and Piper. Read them twice!

As far as the college thing goes....I'm 52. I changed majors 4 times and colleges 3 times (400 miles from home, 600 miles from home and finally 3,000 miles from home!) It only took me an extra quarter to graduate. You have "a lot on your plate". If it were my child (and we do have 3 in college), I would tell him/her to make an appointment with their advisor. Those people can be enormously important and helpful. It is their job to coach kids through the ebbs and flows of their decisions. They are there for support. There's not much they haven't seen or heard. At the very least, one visit to an advisor would reassure your parents that your intentions are honorable and based on true possiblity.

As far as wanting to run away to Africa...I don't blame you!! And Hensylee!! Africa is astoundingly beautiful and exotic! But, LaughClown...you aren't really trying to run from your problems, you are facing them head on in a very mature and thoughtful age for someone in college. I know we are all impressed with your care in your logic.

You mentioned bipolar. You obviously have someone, a professional, with whom these matters can be discussed, also. Consider that as an option.....voicing your concerns to someone who understands your current emotional state.

Please remember, though....the best thing for you, whether you wait, or go through with it soon....try to stay calm and healthy. Eat right (not often easy for a college student), get plenty of rest, avoid excessive partying and try to get some exercise in that is lightweight. No sudden bursts of energy....no grinding strength or high anxiety things.

Good luck. Stand your ground. It is your body, your life.

Marguerite

 

[MikeHeim]

Those who posted above me have it nailed right on the head. I see in your public profile that you have an EF of 46% and medium-severe LV enlargement. Coupled with the symptoms you described, I don't know how even the most conservative Cardio could turn a blind eye.

As someone mentioned above, it really sounds like your mother is just in denial. She does not count as getting another opinion and should not be treated that way. I really can't imagine how someone's own parents can justify taking a very difficult situation and making it even more difficult.

It seems like you know the answer to this one. Keep working with the surgeon and I'm sure things will work out favorably. I certainly wish you the best going forward.

 

[erin]

I don't have advice about whether it is time for surgery or not - wish I did!

I am going through a somewhat similar process - I'm symptomatic and in school. Right now they are still trying to figure out what is causing the symptoms (meds, other problems, or the valves). However, being in school while dealing with this is emotionally quite difficult - now add on top of it you don't feel great, and some days it is overwhelming! I didn't know I had BAVD until recently and found out while I was making changes for my future plans that now I have difficulty keeping up with (course load, etc). What has helped me the most is talking with advisors...and realizing that worst case is I delay my plans for a year because of this mess. It isn't fair, but it could be a lot worse.

Also, it sounds cliche, but this has given me such a new perspective on life. I think even if my plans get totally messed up, it is a bit of a gift to have this view early in life.

With that said - I am with you - between today and six months from today, I'd rather get it done and move on. I hope you are able to get your cardiologist, surgeon, and family on the same page!

 

[PJmomrunner]

Hi LaughClown:

You really are in a quandry. I wonder if you could clarify: I see you've had a coarc repair as an infant, and you also list "postponed AVR and coarc re-repair." Do I understand correctly that you are contemplating the timing of your second surgery? Or are we talking about a third surgery? I am unfamiliar with coarctation repairs, although I do understand what a coarc is and that they are associated with BAV's and aortic pathologies. So...what is the status of your aorta/coarc repair? The discussion thus far has centered around your valve--what part does your aorta's condition play in timing surgery?

Are you male or female? Timing may be more crucial to one who would choose a tissue valve (for reproductive or other reasons), as the timing of future redo's is driven by the condition (and, therefore, age) of the valve that precedes it. IMO, timing is not inconsequential regardless of the valve chosen. While the risks of mortality/infection/stroke are indeed small, there are also risks of of complications that could be characterized, at best, as mere annoyances and at worst life-threatening (anticoagulation therapy, atrial fibrillation, excessive scar tissue, etc.) and they should not be disregarded or taken lightly. Those complications are largely very manageable, but they will impact your quality of life to a degree that only you can hope to predict. Please understand I am not advocating waiting, I'm just saying there are reasons to wait--hopefully, none of us have done/will do surgery too soon. (I'm really not enjoying waiting, but until my condition meets the criteria to operate, I'll wait. ) It's just that by operating you set into motion a series of events that you cannot entirely foresee the consequences of.... Of course , if one waits too long the same can occur (as others have expounded upon).

To me, the key is that you need to do whatever makes you feel more safe and confident in your future. Once you've done whatever it takes to achieve that, you can be (more or less) at peace with your decision. If it were me, I would need to fully understand the rationale of the doctors involved. There are objective criteria you can use to evaluate for yourself (http://www.americanheart.org/presenter.jhtml?identifier=3040632), although I don't recall if they address coarctation. Perhaps you can discuss this with your dad too.

And if insurance coverage would be discontinued if you were not enrolled in college for, say, a semester or even two (since we're coming up on October), that could be a big problem financially that could perhaps be avoided by waiting until summer break. If two cardiologists are saying it's not time and a surgeon is saying it's time, then there may be some middle ground. I would ask the surgeon how my risks would be impacted by waiting until summer (or next summer, even) and see what the surgeon says.

Make the appointments you feel you need and take the time you need to resolve this issue even if it means asking your professors for an extra week or a test postponement. If it turns out you feel immediate surgery is needed, then put school in the second priority slot until you can get body and mind back in the game. I you feel safe in waiting, schedule the surgery for a convenient time and put it on the back burner while you keep your brain busy with school work. (I know, easier said than done. )

And...I always think a second surgical opinion is in order. This is not an ingrown toenail we're talking about.

I admire your inclination to seek concensus with your parents--it demonstrates a maturity that I still sometime lack at 44! . Their interests are, no doubt, very much alligned with yours. Symptoms are sometimes very difficult to pin down and I think that our difficulty in discerning what may be a symptom leads others to doubt right along with us. My surgeon told me to keep a log of symptoms. Maybe that would help you.

(((((Hug))))) Take care. Let us know what you decide.

 

[davidfortune]

Well, something somewhat unexpected happened today. I tried to donate blood today at my university (my card said it was ok). I was denied but not for the reason I thought it would be. I couldnt because my diastolic pressure was too low. Their cut off is 50 and the two times they tested me I was 124/40 and 130/42. Its strange because in the past my diastolic was always around 70. Historically my numbers were usually around 145/70.

A larger than normal gap between systolic and diastolic bp is a symptom of severe aortic regurgitation. You gap was: 84, 88 on the day you were denied. Even your "normal" of 75 is a large gap.

As others have said you need to get copies of all your echo reports and compare the results over time. Increases in Left Ventricle Systolic Diameter (the distance between the interior walls of the ventricle during contraction) and Left Ventricle Diastolic Diameter (the distance between the interior walls of the ventricle during relaxation) are two of the key measures for timing of surgery along with Shortness of Breath (SOB) and other symptoms.

Get your echo results (how many have you had over what timeframe?) and compare those measurements. If you are consistently SOB this is a big red flag as well.

Valve issues are mechanical issues (not mechanical valves but mechanical issues). They cannot be "fixed" by medication. Lowering the BP may prolong the life of a failing valve but it won't "Make it better". Hearing your card say that regurgitation has gotten better is a little odd. What is that statement based on? Even echos that supposedly show an improved "murmur" (which is really a leaking valve) usually turn out to be wrong (either the previous echo was wrong and measured the regurg to high or the current echo is wrong and measures the regurg too low). Echos are an estimate and very dependent on the skill of the technician and the doctor intrepreting the echo (often a specialist and not your cardiologist). That's why surgeons want to cut sooner. Valve regurg won't go away on its own and can't be fixed with medicine. It requires surgical repair or replacement so the surgeon figures if you gotta do it might as well do it now.

If you are having SOB consistently and your echo measurements are showing dilation then you need to be making a decision. Whether that is surgery, a new cardio, or a serious conversation with your current cardio and boxing him in to defend why waiting is a good idea if your heart is enlarging AND you have symptoms. Ask him if he will guarantee that you are not having permanent damage done to your heart - see what he says?

Good luck - Don't run away from this deal with it to get the right answers.

David

 

[Lynlw]

I have a few different questions, I noticed you had repair for coarc as a baby so my first question is are you going to a cardiologists that specializes in CHDs if not i really would go to one because sometimes time frames for surgery are a little different if you have a few heart defects and not 'just' vlave problems (PLEASE don't anyone thinki I am in any way saying "just" a valve to minimize it) If you need a list of cards that specialize inadults w/ CHD
there is a list at http://www.achaheart.org/ also if you haven't you may want to check the forum there to find others who have gone thru the same things.
my other thoughts like mary when i saw you were in college was if you are on your parents insurance and how much longer you would be one it, if it isn't much longer, i would really try to have the surgery while under their insurance just incase.
I think if you have symptons you probably will need the surgery sooner than later, but sine this is a redo,I would really try to get opinions from both a card and surgeon at one of the ACHD centers. Lyn

 

[Mary]

I've gone back and read your previous posts, and I have some more thoughts to offer (Oh you lucky guy!)
If you're in school now, your insurance should cover you through the end of December. If you're not in school, then you need to get your internet classes going so you'll be covered when the next sememster starts.

Regarding your folks, if you're not covered by their insurance, then their views regarding surgery would take a back seat in my book. It's one thing to make suggestions when you're a parent footing a portion of the bill, another when you're not. I have had my BAV replaced, but I also have a 21 year old son (his birthday is today ) with a BAV. I have a good idea of the issues you're facing with insurance coverage.

Since you've had a repair for the coarc, I'm going to suggest that you ignore most of the advice offered on this thread (mine included) about the timing of surgery. I really don't know that much about congenital issues, so I would follow Lyn's suggestion to try and get some expert advice.

You've got a lot of things to think about, and I understand your desire to say
"chuck this". Try to sort the financial and heart issues out and maybe you will have a clearer picture of what should be done.

 

[debster913]

I sort of feel like I'm repeating what a lot of others have said on this thread, but TRUST THE SURGEON. Cardiologists are notorious for taking a "wait and see" approach, and not always to the benefit of their patients. Luckily for me, as soon as I started having symptoms, my cardiologist started running tests THE NEXT DAY to see what was going on with my valve. I had an echo, and angio, and a TEE, which all conflicted in degrees of regurgitation. He did not want me to have surgery, but sent me to a surgeon anyway for a second opinion. The surgeon disagreed with my cardiologist's assessment of my valve; whereas my cardio saw moderate leakage in my mitral valve, the surgeon saw severe. In his words, "Your valve is bad, and it needs to be fixed now." I didn't challenge him--my physical symptoms were reason enough to go ahead. Five weeks later I was in surgery.

Surgeons, of course, want to get in there and fix things (obviously before things get worse--and they can and will get worse if the valve is "let go"--there is no such thing as a murmur getting better; it can stay the same or get worse--in my case, I had (have?) a degenerative mitral valve, so I'd known for a long time that my valve would need to be fixed or replaced someday), but they won't fix valves if there is no justifiable reason to. They can't just cut you open and look around and say, "Oh, this valve isn't bad enough yet." They have to base their decision to proceed with surgery on your tests (TEE is the best assessment tool), and they won't just blow smoke in your hat and tell you they want to do surgery if it's not necessary. When it comes to cardiologists' vs. surgeons' opinions on when to pursue surgery, the surgeon is the expert.

If I were you, just to ease your mind, get another opinion from another surgeon. If they agree on surgery, then I'd say you'd better do it before things get worse.

Take care and keep us posted--

Debi (debster913)