Met w/ Surgeon..."YOU NEED SURGERY!!!"

[deek]

Thanks to all of you who responded to my posts, I took your advise and scheduled a surgical consult. I met with Dr. Steven Bolling, University of Michigan, yesterday and he blatantly told me that I need an operation. Told me he could mix me up 100% with almost 0% risk. Now THIS is a profound difference in opinion from the two cardiologists I've sought, one being from Cleveland Clinic. How can two professional opinions differ so radically? Personally, I feel a sense of relief, in that "I've known without knowing" that something was wrong...I've been significantly impacted by symptoms for over a year now with echos indicating "severe" to "moderately-severe". Cardiologists have been saying my MR is "functional" in nature, caused by systemic hypertension and that there was nothing to repair? Key is to control blood pressure, reducing the level of regurgitation. The problem is they haven't been able to control the BP and it's been well over a year and a half...my level of regurgitation going from trace to severe with moderately-severe PH. When I expressed my frustrations, my confusion to him (surgeon) he said "there's absolutely nothing to be confused about...YOU NEED AN OPERATION!!!" Have any of you had similar experiences? I realize cards and surgeons differ greatly in their approach to treatment but does this radical shift sound right? It feels right to me...but I guess it's just hard to know when you're told two different things.

Thanks,
D

 

[AgilityDog]

Lots of cardiologists like to manage with medication until the absolute last minute. Surgeons like to cut sooner. Lots of us around here believe in earlier surgery before too much damage is done. We're rather on the side of the surgeons in that.

 

[Phyllis]

If you trust him and have confidence in everything he has told you, then go for it- better than before too much damage is done. Let us know when you have a date.

 

[Adrienne]

I had several different opinions including my EX-cardiologist who said I would NEVER need surgery! When I finally had a consultation with a surgeon (the one who ended up doing the surgery), he said I should definitely have surgery within a year or maybe two years (it actually turned out to be 10 months). When I said "I am so confused. I keep hearing different things from different doctors, and I don't know whom to believe", he said "Believe me"!!! He was right.

 

[DeWayne]

my cardiologist was the one that told me I needed an operation and in had to happen in the next 6 months, that until I had it not to pick up anything heavier than a loaf of bread.

 

[Page]

This sounds what my husband is going through right know. The card. sent us to a surgeon who said surgery in 4-8 weeks we then went for the testing at Children's Hospital and they said he could wait a while, and the original card. said surgery so who to believe, personally I believe the surgeon and would like my husband to have the surgery while he is healthy and can recovery well.

 

[hall]

Best of luck with your decision. If you trust the surgeon, I would do it. The cardio told me I could wait 2 years. I think about a month later I had my AVR, and I am glad I did.

 

[tobagotwo]

I am in agreement with those who have posted. It's best to have the surgery before permanent damage is done to the heart. The longer the patient waits, the greater the chance that the heart won't recover recover as quickly, nor as completely.

Cardiologists do tend to hold back from the perceived danger of the surgery, and surgeons tend to want to do the surgery when they believe they will get the best result, while the heart's still a bit stronger.

Surgeons seem to recount the valve to have been in worse shape than was expected in most cases after the surgery is done. If you have symptoms, you probably will feel inside that it's time, no matter how scared you are.

Best wishes,

 

[abbanabba]

Hi Deek - I can certainly relate to what you're going through. 5 years ago, after feeling "off" for sometime (and being a very fit and healthy person otherwise) I finally got around to seeing a cardiologist after I had ruled out all other issues (thyroid, low iron, low sugar, etc). Anyway, after having done a few tests they told me I would need surgery to replace my pulmonary valve ASAP and it was no wonder I was feeling so bad.

Big shock to me, but at least I had an explanation of my symptoms.

Anyway, we tentatively scheduled a PVR for November of 2003 and I had a pre-op MRI and catheter scheduled in the October. I chickened out of the catheter, but after the MRI they decided that my heart wasn't in nearly as bad shape as they first thought and told me I could probably wait a while longer..."come back in 6 months if you're not feeling any better".

I came back 6 months later, with the same issues and they pretty much told me my heart was "functioning fine" and the symptoms I was having were "psychosomatic" as a result of me worrying about my heart..!!! They decided I could probably wait another 3-5 years since they didn't believe a PVR at that time would improve my symptoms.

I moved to another state, saw a new cardio and she while she conceded my heart wasn't getting any better, I must have Chronic Fatigue Syndrome, or something else to explain why I was feeling so bad. So more waiting. I never had the chance to consult with an actual surgeon

Once again I have moved to another state and my new cardiologist has now arranged for the PVR - 5 years later! - which is happening in a few weeks from now.

All along my regurg has been mod-severe or severe, my EF has been in the 40's (36% on one MRI), there's been hypertophy to my right ventrical, and I have had impaired exercise stress tests.... yet still they kept telling me I was OK!

So yeah - immensely frustrating and confusing when you're getting conflicting information from those who "should know best". If nothing else, I've learnt to trust my OWN instincts and to push what is best for ME. Hope you do the same.


A : )

 

[deek]

A- your story does sound a lot like mine; I've been told so many different things over the years I actually considered that I just might be crazy. My consult with the surgeon was a huge relief (not that I want surgery), but at least I know what's wrong and have an opportunity to fix it and reclaim my life. It's hard feeling like this with a two and a half year old. Now I just gotta decide when to do it? Before or after the holidays? I see that your date is coming up and I sincerely wish you well. Take good care, D

 

[Ross]

Unless it's an extreme emergency, there shouldn't be any reason not to wait until after the holidays. I'm sure you'll be ok for a while yet, but not indefinately.

 

[Dawn-Marie]

Hi deek ~ I agree with the others. It would be good to get the surgery done before it causes permanent damage to your heart. But like Ross said, i don't think it's imperative that you have it done before the holidays. I have been deemed inoperable and i worry that i will end up with permanent heart damage before they open up The Partner Study to include people with bicuspid aortic valves (like myself). I'm having more and more symptoms every day, but i have no choice but to wait. So, like Phyllis said, if you have confidence in what the doctor told you. go for it and get it done and over with before it affects your heart permanently.

 

[abbanabba]

A- your story does sound a lot like mine; I've been told so many different things over the years I actually considered that I just might be crazy.

See... I figured they must have been the crazy ones since they couldn't make up their minds as to what was going on Now when they start banging on about their "test results" I start pointing out all the glaring inconsistencies with said results and how the only thing that has remained consistent throughout this whole saga has been my symptoms Seems to have got the message through!

My consult with the surgeon was a huge relief (not that I want surgery), but at least I know what's wrong and have an opportunity to fix it and reclaim my life. It's hard feeling like this with a two and a half year old. Now I just gotta decide when to do it? Before or after the holidays? I see that your date is coming up and I sincerely wish you well. Take good care, D

There is something very vindicating when they finally decide something needs to be done - and for me, getting a date (after 5 years!) was such a relief. Quite a turnaround from when I was first told it needed doing Meanwhile, given how close it is to the holidays, I reckon you should enjoy them with your littl'un... it sounds like the surgery can wait until after then. And take it from me... I'm a little disappointed to be having both my birthday (surgery day!) and Christmas written off because of this surgery - so make the most of them!!


A : )

 

[vprnet]

Managing your decision

Managing your decision

Hello Deek,

I can relate to your frustration and confusion. A year ago, after a stress echo the stand-in for my cardiologist told me i needed AV replacement ASAP. He sat me down and prepared to schedule me for surgery before the holidays.

The next morning at 6:30AM my cardio calls to me it's not urgent and that we can wait 6 months to see how I do on the next stress ehco. I've been with this doctor for 15 years. Never taking my murmur seriously prior to this awakening I started to dig into it like I was preparing for a doctorate dissertation. One of the first things I came across was this AHA guideline on management of heart valve disease (below). I highly recommend it as bedside reading! Actually it?s very informative and as a result of using it I took all my echo reports and tabularized the critical parameters for my type of valve disorder, AV inefficiency. From this I found out I fell into Classification IIB (page 27). I call it 2b or not 2b, since in this class AHA recommends one may either opt for AVR or keep on trucking on the tread mill? until?until?until..

After a visit to ?The Clinic? with another cardio (that makes 3), and (embarrassed to say) interviews with 6 surgeons (yes 6), all who said I was ready and would and should, I realized my decision had to be based on how I feel and what the risk of waiting longer would mean for me. I?m still in the 2B class and I could probably wait until my next echo 6 months from now, but for me, to live 6 months at a time knowing that my heart is constantly working overtime is not how I want to live. So I?m going on the table on December 10 and, God willing, look forward to a horizon of better than 6 months at a time.

Good luck in "managing" your decision.

http://www.acc.org/qualityandscience...ocketguide.pdf

PS, I'm not a medical processional or doctor. My comments are my own opinions and are not intended to be given as medical advise.

BAV diagnosed 1993
Sched for AVR w ON-X Dec 10
FDA Clinical Trial w/o Coumiden

 

[skeptic49]

Yea, I think cardiologists are fine up to a point...but when they tell you you have moderate or progressing valve disease...after that, see a surgeon. Only they have the fix.

Jim

 

[pamela]

Cardiologists want to heal and Cardio-Thoracic Surgeons fix. End of story. Valve problems can't be healed until they are fixed. See a surgeon and then a cardiologist...

I was fortunate in that my cardio sent the report to my Internist and my PCP then referred me to a surgeon. On paper it took 10 weeks but really, they were trying to get me into the OR sooner except people kept needing emergent surgery. There's only so many heart-lung machines and CICU beds so the waiting would need to wait. I did.

Take Heart, surgery is the solution and good cardiology followup and management is the answer... just do step A before step Bk
Pamela.