Different second opinion--what to do?

[JaneBerm]

I just received a different second opinion. My first cardiologist was all for moving ahead with surgery for my severe aortic stenosis (determined on first visit after being found by my internist) and now both the pulmonologist I was sent to by him and the second opinion cardiologist (I contacted on my own)have suggested that I wait it out a bit since I am currently mostly asymptomatic. No one seems to be able to tell me if the slight symptoms I am experiencing are actually symptoms.

Should I look for a third opinion? I'm beginning to feel like the first doc was only looking to increase business for the surgeon, who only wants to see me after all tests have been done (including a cardio cath) and then he will schedule surgery. He is the top surgeon in RI and is known to only take on patients who will have a good outcome. I want to talk to him beforehand, but that doesn't seem to be the way he works.

I'm in RI and thinking of going to Boston next. There doesn't seem to be any doubt that I will need a valve replacement and I've accepted that fact, now it's just the matter of timing. I don't know if it's better to stay in the "waiting room" or have the surgery on my terms and schedule. Any ideas?

 

[Cooker]

Jane ? I don?t know what to tell you except that I was told that the time to have surgery is before you become symptomatic ? I was in the waiting room for a couple of years and knew it was coming and also knew that waiting could allow irreversible damage to the heart ? if your surgeon is the best in RI then I would say that is pretty good ? I had my cath and was in the hospital before I met my surgeon and we discussed valve selection (although I had made up my mind to go mechanical) and the ablation I wanted to address my A-Fib ?.

It was hard to walk through the doors of the hospital not feeling ill ? I trusted my doctors and had no reason to doubt that they had my best interest at heart? I wish I had not had to have AVR at all but if I did I wanted to go in under the best circumstances for me and those were to have it before I was in trouble?. I ?m sure you will make the right choice for you and I am sure that you will do well ? Godspeed

 

[ALCapshaw2]

Personally, I think Surgeons have a better 'feel' for timing since they are most concerned about a Good Outcome.

'Old School' Cardiologists like(d) to wait until symptoms develop or even until symptoms are severe. Now that VR surgery has evolved to a Highly Refined Art with extremely high success rates (1% risk of mortality, 1% risk of morbidity) for first time patients, it is almost always better to have surgery Sooner than Later.

Symptoms mean that DAMAGE has been done to your heart and if it progresses 'too much' that damage to the walls and muscles *may not* be reversible, even with surgery. That is why Surgeons like to 'get it fixed' before the damage becomes Permanent.

Several (many?) of our members thought they were asymptomatic yet their 'numbers' indicated serious valve conditions, often proving to be quite serious as discovered in surgery. Many of these concluded they really were symptomatic after their recovery when they realized how much more enegertic they were after getting 'fixed'.

If you seek yet another opinion, I would recommend that it come from a Surgeon. Cardiologist's can't do much for Valve patients other than to medicate to prolong the wait and refer you to a Surgeon who can FIX the problem.

Boston has a number of excellent Surgeons at both Brigham and Women's Hospital and Mass. General Hospital.

'AL Capshaw'

 

[Phyllis]

Jane, you are close to Boston and either Brigham or Mass General. I suggest that you set up an appt. at either one. Dick saw Dr. O'Gara a cardio at Brigham first and he confirmed that AVR was needed and set it up with Dr. Cohn. Both come highly recommended by us.

 

[BDMc]

Second Opinion

Second Opinion

Jane, I think I agree with Al. I had my murmur detected by my PCP, who referred me to a cardiologist. After the cath, he said I needed surgery within a couple of months. I had an aneurysm, and after getting past my denial, wanted to get it fixed ASAP. I was 29, and told my physician father. He insisted I get a second opinion, and referred me to the Lown Clinic. The cardiologist there, said to take meds, find a new career, and wait for it to get worse. I decided to go ahead. After the surgery, I saw the surgeon, (who was assigned no choice involved) and he said the aneurysm was ready to blow, and my xrays showed my heart had already doubled in size. This was I think, less than a 18 months since my last physical, when I'd been told I had a murmur that should be watched. I would check out the Brigham. I'm pretty familiar with all the Boston area hospitals, and while I haven't been a patient there since I was born, I have had friends and family receiving care there. They had better care than the other hospitals including Mass General. I'm thinking of changing my PCP to get out of Beth Israel Deaconess. There are some good people there, but it is dangerously dysfunctional. Sorry to tell such a long story, but it conveys my experience, and opinion. Brian

 

[Eva]

Hi Jane,

I will share with you my experience which might be lengthy but I hope it sheds some insight. If you doubt your cardio's intentions, I would seek a third, fourth, and fifth opinion if you can afford it, including the good surgeon's opinion, if he cares for patients more than business!! When surgery was recommend to me to take place within 6-12 months, I checked with 3 other cardios and 3 surgeons because I thought I was well I WAS WRONG as I did not relate my symptoms to my valves/heart's problem.

In 1986, I was told that 'one day' I would need surgery due to my aortic insufficiency (leak). In 1992 my mitral valve started leaking. I asked if I could do the surgery then before more damage takes place. All cardios said NO since I was feeling great. In 2002, the insufficiency became severe and mitral valve leak worsening, My cardio told me that I will need surgery within 5-7 years. I strongly argued again and I wanted to have the surgery then while I was feeling healthy, strong, younger, and mentally ready!! He disagreed and his answer was it was better to avoid 'the knife' as long as I did not have symptoms!! All others I saw agreed too---the Ejection fraction was OK, the heart's muscle was ok, and I was managing well. In March 2008, my cardio recommended surgery within 6-12 months and it came as a shock to me as I thought I was well; the echo test showed my heart's muscle was more enlarged and EF was worse. I was noticing, before I had the echo, that my ankles were swelling (I related it to eating salty food), I was out of breath (I thought it was mental and those were sighs) I was not exercising and I stayed home feeling 'lethargic' and fatigued, I postponed some chores waiting for my energy to come back (I thought winter and long days were affecting me). I was wrong as I did not know these were THE sumptoms.

Good luck. This is a difficult time, and I hope we all can help you here with our opinions and experience and keep us posted what other cardios/surgeons will say.

 

[ctyguy]

Jane...

I also had severe aortic stenosis and it was recommended to have surgery fairly quickly. I had a few instances where symptoms were apperant prior to the surgery. The bottom line is that for some people the first symptoms are also the last. If you know you need to have it done and are in relatively good condition other than the heart issues I would suggest getting it taken care of sooner rather than later.

The only time I had symptoms was when I exercised, and even then it was vigorous exercise that brought it on. So I walked into the hospital for OHS actually feeling pretty good. But don't let that fool you because you could be put in a situation where you need to exert yourself prior to surgery and that is really rolling the dice. If you know you need it, have a diagnosis of severe stenosis, and have a surgeon your comfortable with, the best thing I think you can do is belly up to the bar and get it taken care of.

Best of luck...

 

[Jkm7]

Jane.... Sorry to hear the dilema with which you are dealing.

I agree it would be a good idea to come to Boston to Mass General or Brigham. When you have two of the five top heart centers in the country a short drive from home, it makes sense to consult there.

Also..... it is VERY common for surgeons to see patients after all testing has been done. My first OHS was emergency but when I learned I needed a second in four years I chose to return to my same Mass General surgeon who took such good care of me the first time.

I was instructed to bring my TEE and Cath CD's and all reports to our appointment. He reviewed them while we were there and set up the date for surgery at that time.

Good luck.

 

[DebbyA]

Must stress this is only my opinion, but like Eva, I'm one who looking back realize I didn't recognize symptoms, and have wished I'd had my surgery earlier. Immediately after surgery, the surgeon told my husband the valve was in much worse shape than he had thought, and that I would feel a lot better in 6 months, and he was right.

If your tests show severe stenosis, it may not be long before you have unquestionable symptoms anyway.

Best wishes,
Debby

 

[Eva]

....Immediately after surgery, the surgeon told my husband the valve was in much worse shape than he had thought, ...

My surgeon said the same thing to my husband. Both valves were in a much worse condition than he expected! When I saw the pictures later, I wondered myself.

God luck. With my prayers,

 

[Duff Man]

I'm not trying to freak anyone out or be insensitive, but I knew a younger guy about my age that needed an AVR but went to the gym three times a week and he appeared healthy as a horse. He had his AVR scheduled two months out, and one month before his date, he died of sudden cardiac death - probably related to the severe stenosis. So I don't think this is anything to play around with. Get another opinion if you want, but I'd do it sooner than later.

 

[ctyguy]

Duffman....the guy you knew sounds like one of those first symtom / last symptom types. It may be seen as harsh to some but the reality of it is that if you have a heart condition like severe stenosis it can easily be the end of you. I know my surgeon said my valve was in very poor shape, extremely calcified when he took it out. There was a big as snow storm about 1 week after my diagnosis, one week prior to my surgery. I am absolutely convinced that if I had shined on that cardio appointment (which I nearly did) I would have been one of those guys that keels over shoveling snow. I didn't know I even had an issue with my heart but I knew something wasn't right. I absolutely feel like I cheated death.

 

[Duff Man]

I forgot to mention that I believe you should be consulting cardio-throracic surgeons, because they have intricate knowledge of valve function and the like. I think a cardiologist's input is still somewhat valuable, but I believe ultimately a valve surgeon is the best bet for advice on when. That's what a valve surgeon deals with day in and day out. They think about timing of VR, risks vs. benefits, and perform the actual surgery.

To let your cardiologist have the final say might be a little like going to a general mechanic for a transmission problem. Transmissions are highly complex machines that require more than just a general understanding of them to diagnose or repair.

 

[JaneBerm]

Thank you everyone for your advice

Thank you everyone for your advice

I really appreciate everyone's advice and I'll be following up with both my internist and cardiologist next week. I'm beginning to believe that the "strange" feelings I am experiencing are truly symptoms--even if they aren't the traditional ones that I've been told to expect. I'm going to talk to them about the possibility of going to Brigham & Womens in Boston.

Since I'm a post polio and expect that my recovery will be a bit more complex that most (just getting back on my feet and starting to walk again will be an issue). I'm still not sure how I'll manage to walk with crutches, but I guess I'll cross that bridge when I get to it. It does seem wiser to do this on my terms and having a plan will certainly be better than going in as an emergency. I'm trying to get my head to place where I can feel comfortable walking into a hospital and accepting that this is the best decision I could make. I'm grateful for all of your advice and thoughts and will keep you posted on my progress. Maybe someday I'll be able to help someone else feel better about their choices.

 

[ALCapshaw2]

I suspect that everyone here 'get's it' when it comes to wrapping your head around the idea that it is better to let a surgeon cut your open and operate on your heart than to 'wait for symptoms' (to worsen).

It sounds like you are 'on track' which is good.
Be sure to mention your Polio and crutches to every Doctor you talk to and ask how that can be accomodated in your recovery.

Planning Ahead is what it's all about.

Best wishes!

'AL Capshaw'

 

[EVELYN]

Jane

I would agree wholeheartedly (no pun intended) with Al's two posts. I think the surgeons like to get in there and "fix it" before too much damage is done, while the cardios don't want to push the surgery if it's not necessary at that time. I know with my husband, the minute he went into the hospital with afib, our cardio told him it was time and surgery happened within a month after he got released from our local hospital. I don't think we waited too long, but my philosophy is to get it done while you're still healthy and have no heart damage.

Just my humble opinion.

Evelyn

 

[westie]

too many opinions

too many opinions

after seeing the surgeon i asked our gp if i should get a second opinion. he said the problem with getting extra opinions is that you DO get extra opinions which will all be diferent in some way.

the more opinions you get, the more confused things will get. i reckon the best thing to do is get one opinion from a recognised expert and just put your trust in him ( but do not hesitate to choose which valve is used )

surely it is a good idea to do surgery sooner than later. you will never regret doing it a little bit sooner but may regret a being little bit too late

 

[ALCapshaw2]

after seeing the surgeon i asked our gp if i should get a second opinion. he said the problem with getting extra opinions is that you DO get extra opinions which will all be diferent in some way.

the more opinions you get, the more confused things will get. i reckon the best thing to do is get one opinion from a recognised expert and just put your trust in him ( but do not hesitate to choose which valve is used )

surely it is a good idea to do surgery sooner than later. you will never regret doing it a little bit sooner but may regret a being little bit too late

What MOST patients seem not to realize is that MOST Surgeons do NOT use / offer ALL of the Valve Options.

This is especially true for the Newer Valves such as On-X and possibly some of the Newer Improved Porcine Valves, not to mention the Ross Procedure which is a Very Complex surgery performed by a relatively small number of surgeons. (edit - and don't forget the option of Minimally Invasive Surgery which is another procedure NOT offered by ALL surgeons)

Some patients who were interested in the On-X Valve were able to persuade their Surgeons to use that valve (such as yourself Westie) and some have NOT been successful in persuading their surgeon to do so (some specific examples at Cleveland Clinic and Mayo Clinic come to mind).

As a result of the above, patients with a specific Valve option in mind would be wise to Search for a Surgeon with Experience using that valve option.

'AL Capshaw'

 

[Karlynn]

I think the key word is "severe". IMHO (truly), what's the harm in replacing a valve that's severe even if you are asymptomatic. However, I'm guessing you truly aren't. You are feeling small things now. It's highly likely you'll get the surgery and recover and realize that you were more symptomatic than your body was allowing you to see.

 

[Duff Man]

You'd be surprised how unanimous surgeons can be. For every surgeon consult I tried to keep them unbiased by not letting them hear the other surgeon's opinions. Even though they didn't know what the other said, their opinions on my situation were pretty close except for the local yocal and a doc who I never met face to face. I had two extremes and a few moderate opinions and I agreed with the moderates in making my decision. Or maybe I just averaged their opinions out and went with it

Don't settle for anything but excellence.