Cardiologist versus Surgeon...........

[ALCapshaw2]

Here's a relevant post from CCRN (a nurse) that I copied from her post "I'm BACK". Note that she didn't use any capitals but still came down on the side of early intervention. I loved her last statement.

'AL Capshaw'

CCRN wrote:

I hope you've already had a cardiothoracic surgeon's consult. My cardiologist is a great guy.....like him a lot....but he also thought I could wait till the first of August to get a second echo and after the results of the Jan. echo my surgeon suggested another in May which indicated surgical need. My cardiologist suggested I wait until after I enjoy the 4th of July holiday to have the surgery. I decided I would enjoy the holiday much more with a nice scar down my sternum. If I had followed only my cardio's advice I most probably would be either severly disabled or dead before the summer was over. Hindsite is golden and here's my advice: When you have something that can only be corrected by a surgeon, get a surgical consult as soon as you can.

(CCRN)

 

[Karlynn]

I also like CCRN's final comment. Could be another VR mantra, along with Don't Diet the Dose, Dose the Diet.

I think we recommend weighing a surgeon's opinion more heavily than the cardiologist when we see people reporting of symptoms, or they report measurements that we know, from experience, can easily lead to permanent damage (or death, such as an aortic aneurism) and their cardiologist is still saying they have time, or can wait.

I don't think it's true that surgeons will always recommend surgery, particularly in this day and age. We have members who have consulted surgeons and have been told it's not time yet.

We have lots of stories from members, who have had permanent damage done because cardiologists who have waited too, long. We have few, if any, stories of members who have said that they were operated on too soon. I have permanent damage because of waiting too long (fortunately, not a lot) and I still give my cardiologist of that time all the thanks for saving my life. He was the first doctor I saw that aggressively saught answers to the problems I was having. He hesitated on the surgery because of my age.

I've seen more bad doctors than I've seen good doctors. That doesn't mean that most are bad, it just means that I stopped looking when I found my good doctor. There was no need to continue on and find another good doctor! But what it did give me, was the knowledge that not all doctors know what they practice.

 

[Debrinha GT]

Bob, this one is for you!!!

Bob, this one is for you!!!

First of all, what does MI mean? I was so sick when I did my first cath that I had to be put in ICU for a few hours before they would take me back to the room. I was ten years-old and only weighed 21 kilos,and nearly three of them were edema. Well, I loved your explanation and I was wondering if the same can be applied to me with a thickening mitral valve and a permanent enalrged left atrium as a result of my serious condition from over 30 years ago? Cardio says I should go for walks and the surgeon agrees.I'm going for an appointment within a few weeks to see how the valve is. Thanks in advance.
Débora

 

[McCln]

The good question is which one can you trust and whay can't they work as a team. Some can and som cannot. It is a trust issue and hard one at that. I was lucky, I knew that I would have to have replacement since I had the repair at 8, 1973. So, there was no surprise and the wait for dental work and was glad when surgery was done. I was in bad shape with CHF developed. The damage was light and have recovered luckily. Good luck on your situation. It is hard to decide who to trust. Good luck.

 

[Marguerite53]

Thanks to everyone.

Thanks to everyone.

I truly appreciate everyone's responses. Nancy. Thank you for sharing the timeline of Joe's experience. I have always been curious to hear it succinctly like that and I truly appreciate your sharing it. I hope you two enjoyed his birthday and that he is feeling well.

Caroline. Yes, I too would like to know why it is the cardiologist and surgeon don't seem to work in concert.

Bob, I'm curious about your comment about the anxiety. Where did this come up in your volumnous research? Have been blaming hormones and blood pressure on my elevated response to just about everything and am driving my family crazy. Would love to know more.

• The existence of patient symptoms, such as angina, shortness of breath, palpitations, sleep apneas and disturbances, and even anxiety. Yes, anxiety can be a symptom of heart disease - in some people, the body apparently senses the problem by lack of oxygenation or similar and sends out panic chemicals. Some people do not have, fail to recognize, or refuse to acknowledge symptoms.

Al, Karlynn and CCRN. Thank you all for your input. Your comments are very helpful and the kind which may be needed to spur some people into action and that action could be very very valuable.

Marguerite

 

[Gemma]

Jim's experience was perhaps a bit different for 2 reasons - a) we're in the UK and things just kind of get pushed along as and when admin/waiting lists allow and b) he didn't acknowledge his symptoms for a long time (so Bob, you're right again! ). Anyway, here's how it happened:

February 2003, Jim was waking up in the middle of the night, every night with "stabbing" chest pains - freaked me out so I told him to go to the doctor. He told me last year it had been getting progressively worse for a couple of years. Of course at the time I had the crazy idea it may be a pulled muscle or chest infection!!! Saw his GP, who ran an ECG and referred him to the local hospital for an echo.

March 2003, saw cardiologist for the first time. At that point his LVEDD (left ventricle end diastolic diameter -when it's relaxed and just before it pumps or at its biggest point) was 7.3cm. I believe 7cm is generally accepted as the point where you definitely need surgery. At that appointment his cardio said he'd need valve replacement "within the next year".

May 2003, Jim's dad chased up the hospital admin and discovered he hadn't been referred to the surgeon, and arranged for that to be done. Took 5 hours of phone calls and many arguments but he got it done.

November 2003 - went in for pre-op tests, operation scheduled for last week of November. Then too many sick people in ICU meant there were no beds, and as Jim was less ill than other patients, his op was put back.

December 2003 - had the AVR. His LVEDD immediately prior to op was 7.7cm. Surgeon didn't think it'd ever get back to normal size, as it was so enlarged. Luck was obviously on our side though, as it was 4.3cm a month later .

January 2003 - cardio saw how "fast" Jim had been operated on (7 months from referral) and said something to the effect of "gosh, that's his urgent list".
So, although the cardio did say he'd need the surgery within a year, he was still surprised at how quickly it actually came about. And that's in spite of Jim's numbers being way up there in the very beginning. Plus the chest pains, and some SOB as the year progressed.

So, what's my opinion? Honestly, I'm not entirely sure. In Jim's case there wasn't an option to wait years, it was more a matter of at what point in 2003-2004 he'd have the operation. His surgeon thought it was too late for his heart to get back to normal, but it turned out he was wrong. Maybe his fitness level meant his heart recovered better, but who knows? It certainly wouldn't have got better on its own, and waiting any longer, even a couple of weeks, may have meant irreparable damage. But he wasn't having particularly bad symptoms - OK, chest pain and occasional SOB but nowhere near what many members have reported. Maybe down to his fitness level - he would regularly cycle 15 miles to visit friends (each way) - even daily. And perhaps put some of his symptoms down to overdoing it.

If it was me, and I wasn't having any symptoms, I'd be hesitant to have surgery. But as soon as it started to impinge on my quality of life, I'd be knocking on a surgeon's door. It's a judgement call as Bob said, just a question of whose judgement you want to rely on.

 

[Debrinha GT]

Health service

Health service

Robert and I nearly went to live in Scotland a couple of times. When I lived there before, I could go and see a doctor at any time and every six months I had an appointment set with the cardio. I felt homesick quite a lot and on a few occasions had to get the emergency doctor to come in and see me. They would just give me some tranquilizer and leave. During one of my visits to the cardio's I asked if I would ever need another OHS and he said that I would one day. I was shocked since neither my former cardio nor my mum had ever mentioned that. You see, my mum has always been the one who took care of it all and I would just do as she told me to. It was also in Britain that I questioned pregnancy for the first time. I don't know how what things would've been like if I'd actually needed a replacement while living there, but I never had any complaints about the care I received.
Débora

 

[tobagotwo]

Oona, Ventricular hypertrophy means that your heart is somewhat enlarged. The ventricle enlarges with the extra effort, and it is described as hypertophy. The pulmonary pressures are frequently screwy on echoes even nowadays, so it is hard to tell about that reading. No vegetation is good (usually means no current infections). You have calcifications on your aortic and mitral valves (you're at the right site for that!). Your mitral regurgitation is mild, but I didn't catch the aortic rating for either the regurgitation (sometimes called insufficiency) or the stenosis (mild to severe). Did they estimate the valve opening? With a history of rheumatic fever, heart attack, deep anemia leading to cardiac arrest, and a right bundle branch block to boot, you are a challenge for your cardiologist, I'm sure.

I would be concerned about coronary artery blockages. Catheter angiograms have improved a lot over the years, but I know you have special reason to be skittish about them. I would be, too, after your experience. However, there is more than one way to skin a cat. They don't have to do a cath. They can do an MRA (an MRI for the arteries) instead. They do inject a dye into your arm at one point, but it's just a regular needle, and it's otherwise not invasive at all. And MRA uses magnetic resonance - no radiation.

Michaelina, it happens a lot that people have to change their cardiologists around surgery time. I suspect it doesn't always mean the first cardiologist was a bad choice. I think that often, the right cardiologist for the lead-in is not the right cardiologist for the follow-through. There are different professional strengths required, and it may not be realistic to believe that the best diagnostician would be the best choice for year-to-year cardiology, or vice-versa. My original cardiologist was a crackerjack diagnostician, and he called the timing of my heart surgery perfectly. But he's also something of a little Napoleon, and he and I would have been at each other's throats afterwards, as I do not relinquish control gladly or easily. My current cardiologist is easier to get along with, but I may be looking for the first one again for a consult in another 17 years or so, as he was just that good.

Best wishes,

 

[Harpoon]

You have to do a careful "cost/benefit" analysis of the situation and every situation is going to be different.

Gather as much information as you can from your cardiologist, and even a surgeon if you already have one on your case.


There are some obvious benefits and risks of course:

If you have a "bad" valve and it's going to need fixing at some point you might be better off getting it done early, before you get sick (CHF and the like) and continue to live at about the same quality of life you had before your valve started acting up.

However, surgery isn't risk-free and even in the simplest of cases, people do sometimes die, or at least suffer some major complications.

Waiting to the last minute isn't all that great for some either. You can wait too long, I almost did. You can get real sick real fast even when you have a surgical date already penned in on the calendar. Stuff can go downhill in a hurry and often, the damage done to your system while waiting can make recovery time more difficult.

I think in the end, it's a personal choice based on your life, your family, your work, your finances... Do you have a top notch surgeon? Can you get a second opinion, maybe there's another option for surgery that's worth investigating first. Do you have a top notch cardiologist? Some won't wait to refer you to a surgeon. They recognize that there's something going on they can't treat "medically" and that your best option for survival is surgical, even if it isn't a case that is presenting symptoms yet. How often do people go to the ER with chest pain only to be refered directly to a cardiac surgeon with an OR scheduled for only a fwe hours after first walking into the hospital??? Sometimes this stuff can come on VERY suddenly.

Sometimes a congenital heart condition like a bicuspid aortic valve isn't discovered until much later (70+ years of age) in life and the patient would simply be better off NOT having surgery because of the impact it would have on their physiology do to their advanced age. Their quality of life is affected only minimally by the defect and fixing it would do more harm than good in the end.


It's a case by case situation, you can't just say, "Yes, it's better to have surgery as soon as you find out" or, "No, wait until surgery is the last option available..."

 

[afraidofsurgery]

Cardiologist vs surgeon

Cardiologist vs surgeon

Wow! what an excellent debate! I've seen both. My aortic regurgitation was first diagnosed in 1980. Then in 1991 I was finishing grad school and something didn't feel right so I went to the student health ctr doc and was told to follow up with a cardiologist or surgeon, leaky aortic, etc. But I was on my way to San Diego so I looked up a cardiovascular surgeon there at Scripps. She was so ready for me to have surgery, she scared the crap out of me. I didn't like her, and didn't think she gave me enough info. I came back to Chicago (if I was going to have surgery it was going to be here), changed jobs/careers to do it, what a hassle. I was referred to a surgeon via a friend. He was very likeable made a high-level (no tests) surgery recommendation, but he referred me to a cardiologist for more tests/evaluations. I had a stress MUGA and echo right away and things appeared to be OK. I have been asymptomatic and we have data on my left ventricle for 10 years and while it has been enlarging very slowly, nothing drastic's happened. Also I wanted to have kids and was terrified of surgery (thought I'd die and that it wasn't the right time for me). I did have a daughter (she's 6 now) and am feeling more accepting of the prospect of surgery. So for me the strategy has been a joint effort of me and the cardiologist. I do research/reading on my own, he has warned me of the risks of waiting, and I believe the time is approaching where I should have the surgery. He spends time talking to me about my exercise, general health, what's going on in my life, what valve we should choose, etc. In return I trust him and am honest with him about symptoms, decisions, etc. As a side note, I always go to doctors at high-ranking teaching hospitals (because I can due to where I live), I find out where they went to school and did their residencies, and don't go see any yahoos. I also won't spend any time with docs who won't answer questions or debate issues with me, as I know few things are cut and dry. THANKS FOR LISTENING!!!

 

[Gemma]

Patty, good point - always ask questions! I think it's the only way to get the best out of your consultation, whether it's with your cardiologist or surgeon.

Debora - I didn't mean to imply that Jim's cardiologist isn't good, because he is and has been open to discussion on the occasions I've been along to Jim's appointments. I think he and Jim's dad had a bit of a disagreement (well, OK a big disagreement ) over the delay in referral, but it's all in the past now and not worth worrying about. I don't think we'd have much chance of a sensible conversation with the cardio if Jim's dad was to come along again - think he's still a bit prickly about it -but as one of his parents still seems to feel the need to come to check-ups, it's now his mum and it's all much more easygoing! I think maybe his cardio's timing was a little off by maybe a few months, but in the long-run it all worked out OK.

But I still think anyone who's wondering if their cardio is right about waiting should be considering a surgical consult. If you're wondering there's usually a reason, and gut instinct shouldn't be ignored.

Gemma.

 

[jax3172]

How to sift through the data

How to sift through the data

Marguerite,

This is a great thread. The bottom line: I forced the issue and made an appoinment with a surgeon (7/5) to compare what he says to the cardiologist.

My case: feeling progressively worse over the last 18 months; echo shows mild calcified Aortic Stenosis and Bicuspid AV (probably from Rhumatic Fever as a child); mild to moderate increase in left ventricle wall thickness (hypertrophy?); mild aortic regurgitation; mild left atrium enlargement; diastolic left ventricle relaxation abnormality; dilated aortic root and dilated ascending aorta (how dilated? - beats me - the report says mild to moderate).

So tomorrow is the first time I get to sit down with the cardiologist that did the echo to understand what all this means even though the test was done on 5/23). I do know I feel rotten sometimes (but not all the time). I have been told not to lift weights and run the way I used to.

I'm really looking forward to tomorrow and will let you all know how it goes.

 

[Chester5er]

I would like fresh discussion on ?the dance?. Cardiologist versus Surgeon. Whom to believe? Who to trust? How to get from one to the next. What steps to take? How to maneuver your way through??.

There are many new members here recently. Some discussion has come up within threads which cautions a blind trust of the cardiologist since they ?tend? to want to wait ?too long? before setting up a date with the surgeon. We hear mostly from the patients for whom that wait was damaging. Do we have any idea the caliber of those particular cardiologists whose advice turned out to be bad? Do we ever hear from anyone who was glad that they waited out the cardiologist?s timespan? Do we know either way whether quality of life on either side of the journey was the source of some of the cardiologists plan? Seeing a relatively healthy person jumping into an unknown outcome prematurely might be ill advised. Sure, the surgery is inevitable, but how does a doctor gauge success on both sides? Does the call for waiting out the new technology hold any relevance?

Many many questions from me, here in the waiting room. 2 months from being an empty nester with 3 all going back or on to college. Feels like a good time to push. My numbers are close. Would relish any and all comments.

Thanks! Marguerite

Marguerite,

After a yearly echo, my cardio noticed that my aortic root had grown to 4.8cm. He called for a CT to confirm but did not feel it was surgery time yet. After the CT came back, he had second thoughts and called the surgeon. The surgeon has agreed that the aneurysm is stable, but at 4.8cm, it is best to think of surgery soon. I decided to go for it and am having a aortic valve/root replacement late this month.

So ... I feel that perhaps the cardio will put it off as long as possible and try to treat it medically. I think my cardio had second thoughts and referred me to the surgeon. I would say that it is, as always, up to us to be our best medical provider.

For me, to wait it out for any medical improvement down the road is really, really risky. Also keep in mind that the cardio will not know your family situation as much as you do, and will not take that into account when he/she states a time-frame for surgical intervention; sometimes, it comes down to conveinent timing for the patient (provided you are stable).

I also know what you mean about being healthy, with little or no symptoms and then getting a major sugery. I have had a mitral-valve replacement, so this time, I will be able to reference how good things are agin down the road ... which they always seem to be.

Good Luck
Chester5

 

[Marguerite53]

Keepin it going...

Keepin it going...

Thanks all. Jax. Looking forward to hearing all about your visits with cardio and surgeon. Very interested, actually. Please start a thread when you get some info.

Chester. When numbers start hopping off the normal range, I know I would start to get concerned. If someone said aneurism to me, I'd be making all kinds of appointments. Not because I'd insist on immediate surgery, just because I'd insist on some well described answers! I suspect many of us are glad you are headed for surgery sooner than later!

My numbers are frustrating......hobbling in range, pretty much, so I'm trying to be patient and see if they steady out and stay constant. My symptoms fluctuate. New ones seem to pop up, old ones seem cured by meds......I know I'm feeling quite differently than I think I ought to, but not dangerously so.

Harpoon. Thanks for the sage and practical wisdom! Gemma and everyone else sharing stories.....thank you so much. I think the reading has been truly illuminating in some cases. A glimpse into varied progressions of our shared experience. Much appreciated.

Marguerite

 

[Sherry]

Hi, Marguerite,
I knew I had a prolapse for years but just thought it was a "murmur" that lots of people live with. About eight and a half years ago, my gynecologist, of all people, told me he didn't like the sound of my heart and insisted that I go see a local cardio. The cardio listened, scheduled an echo, and told me I needed surgery immediately, which because I was aymptomatic, I didn't want to believe. My RN sis-in-law suggested a second opinion in Indianapolis, which cardio #1 agreed with, and he (cardio #2) also said I needed surgery right away and sent me and my echo tape off to the surgeon, who was just down the hall from him. The surgeon said "absolutely", and there I was scratching my head, remaining asymptomatic, and not wanting surgery or thinking that I needed it. A few weeks later, I had the replacement, but here I was, an example of cardios and surgeons telling me I needed it immediately, and I (the patient) not believing how bad it was. Of course, I had no support network (VR.Com) at the time and was just basically in the dark.
This is just my story and hope that it gives you some insight.

 

[Mary]

In my case, I knew when it was time to ignore the cardiologist and get the surgical consult. I was given the early June time frame last December by a New York surgeon, and when I went for a second opionion in St. Louis, the second surgeon suggested surgery immediately.

However, I wasn't ready for surgery back in 2001 when my bicuspid was first diagnosed after an echo for a new murmur. The cardiologist served me well during the early years, but he didn't seem to recognize the "once it starts getting worse, it gets worse faster" adage (credit to Tobagotwo). By the time of my operation, I knew I was pushing my time limit. The surgeon expressed the same thought when he talked to my family after the replacement.

But don't forget Marguerite, this is a big surgery. I know others might downplay the seriousness, but you realize going into it, that you are taking a chance on losing your life. I would never consider having the surgery pushed up to meet situational criteria (ex. It's a good time--nothing in the plan book for two months)

I regret dearly the amount of time I have spent wondering if "it was time."
I intend to think very little about the timing of my next surgery, and find a cardiologist whom I trust and respect enough to rely on his/her professional judgement. Failing that, I would arrange my own surgical consultation.

 

[Ross]

I do hope no one is downplaying the seriousness of this surgery.

 

[KathyH]

I went 22 years knowing I had a leaking valve, never even was referred to a cardiologist until I was about 40. My cardio kept telling me I just needed to be watched every 6 months for the last 2 years. Even when she found the 4.7 aneurysm along with moderate to severe aortic regurg, she thought I could wait. I did my own research and got alot of opinions from Ross, Al and so many others on this board. I was lucky to have their ideas. The way I feel, is that the area I live in does less aneurysm and valve replacements, so they have less experience and have more risk associated with the risk. My stress test showed EKG changes while exercising, I could have had a heart attack . I went to Boston and was lucky to see a well known specialist. Dr Cohn did my valve replacement and aneurysm repair within 3 months, I feel so much better now. I was glad I got the courage to see a surgeon. It is a personal choice, you have to prepare yourself for surgery, it is no picinic at the beach. There is no right or wrong answer. It is important to avoid damage to your heart.
Kathy H

 

[Marguerite53]

Thanks to all.

Thanks to all.

These are all incredibly helpful responses. I've noticed another thread about choosing hospitals, asking whether we look for high ranked hospital or high ranked surgeon. Kathy brings up the point that ".....the area I live in does less aneurysm and valve replacements, so they have less experience and have more risk associated with the risk." I suspect many of us are in a semi-large metropolitan area and could travel, but would rather investigate their local hospitals first. Aside from the obvious lists available on the internet and the wonderful gathering of personal rankings here, how does one decide whether their local hospital is experienced? I mean, here in Portland we have Dr. Starr who helped design the first mechanical valve. I assume alot goes on here! Would some of you elaborate on where and how you have gathered your statistics from the actual hospital? Do you call and have numbers faxed? which office? what kinds of numbers are important, really? (maybe I should start a new thread on that??)

Thanks so much!

Marguerite

 

[Phyllis]

Knowing that surgery was down the road, for about a year, we did a lot of research on the internet. Unfortunately, we didn't find this site until after the surgery. The most natural hospital for Dick to go to would have been Yale New Haven which is an hour away from us. We first had a consult with a surgeon from Yale who was pressing Dick to have the surgery immediately- within two days. Because of our research, we knew that Dick wanted minimally invasive surgery if possible and the newest Edwards Magna valve which had just been approved and used by a select few surgeons. The surgeon from Yale did not do minimally invasive and had no knowledge of the Magna valve. Needless to say, he got crossed off the list immediately. Because of our research, we knew that Cleveland Clinic was considered #1 and that Brigham and Women's in Boston was high on the list. Cleveland seemed too far to go, so we started to investigate Brigham and Dr. Lawrence Cohn. We were fortunate through my daughter's friend to be able to get an appointment with Dr. O'Gara, the cardiologist at Brigham within a week after seeing the Yale Surgeon. When he confirmed that surgery was needed and asked us who we wanted, we were confident in asking for Dr. Cohn. You can find out a lot about a surgeon by doing a google search on his name, doing a search right here in this forum, on the hospital web site, etc. Don't be afraid to ask the surgeon when you meet with him just how many of these procedures he has done, mortality rate, etc. Be thankful that you have the time to do the research and come to an informed decision that puts your mind and heart at peace.