Plz help - multiple medical opinions

[cmdm]

I feel I have not yet earned the honor of even posting on this site, but I do have a Mitral Valve condition and feel the need to share something that happened yesterday. Currently I am 45 year old woman, married with 3 children. I have been under a cardiologists care for 20 years with my condition. Through the years I have been faithful with all visits and testing. My cardiologist referred me recently to 2 heart surgeons for their opinion of my condition, now in severe state and increasing symptoms, one local and one at U of Penn. My understanding of the local surgeon is that I would need an MV replacement and was sent for pre-op testing. The physician who preformed the R & L Cath yesterday stated that "We rarely see this condition here (USA) it is typically indigent people in Mexico City and elsewhere who have this condition". Based on the posts I've been reading on this site I've seen quite a number of those with MV issues. I took offense to that statement. After the procedure he practically convinced my husband out of my having surgery due to the fact that my heart has great pressures and that a new valve would not be as good as the one i have (the one I was born with). Now, I am completely frustrated that this man has given his unsolicited opinion, I have been mentally preparing myself for surgery preparing living wills etc. and this man (the physician conducting the procedure) comes along and says this. Should I be frustrated by this man's unsolicited opinion? Why would he say this? Do I have the right to be upset? How much stake should I put in his words?

Scared, confused and frustrated, please send your thoughts,
Many thanks,
Dominique

 

[Midpack]

Dominique:

Welcomed to the site!

What is exactly the problem with your mitral valve?
The most common problem, i beleive, is regurgitation (also called insufficiency, leakage). When surgery is indicated, surgeons will allways try to repair the valve instead of replacing it. Nowadays, in goods hands, there is a very high possibility of successfully repairing it (close to 100% for "simple" and typical problems, like isolated posterior leaflet prolapse). One great advantage of having it repaired instead of replaced (with mechanical) is not needing lifelong anticoagulation therapy.

 

[cmdm]

Thank you for your warm greeting and response!
I do have regurgitation (upper chamber enlarged), 'fish mouth' valve and was told I will absolutely need an entire replacement, not a candidate for a repair. My condition has been termed severe and I believe the valve opening was measuring about 1 (not sure what that means, but I was told by my surgeon they want to operate at about 1.5). I should know all of the measurements/pressures but I will obtain all of that when I see my local surgeon on Weds. and the one from U of Penn the week after. I'm just frustrated right now b/c of what the physician said yesterday after preforming the Cathetrization test. I had not inquired as to his opinion and I'm confused about what he said. Again, he was only the diagnostic physician. I have two surgeons I will consult with about the test results. But this doc yesterday really has convinced my husband that I won't need surgery. I feel that information should come from the surgeons I am seeking opinions from. I have come to terms with the likelihood that I will need surgery. This site has given me a lot of insight to pre/post op. It is just causing confusion, do I take his opinion as a valid one? Would he know something more than a surgeon?

Hoping to figure it all out,
Dominique

 

[Jkm7]

Welcome to VR.org. Happy you found us but sorry for the reason.

I'm confused why you would be upset with a physician who performed a test you requested and then didn't want to hear this professional's opinion of the results of the test? Perhaps I am misunderstanding but it is customarily a highly trained interventional cardiologist who performs this procedure and it provides valuable information. My Internventionalist certainly discussed the results of my cath with me and I expected him to.

By all means, further discussion with both the surgical consults and your cardio are in order but I don't think he overstepped or was out of order to tell you what he learned while performing your cath. I wanted to hear all professional opinions and viewpoints for both of my OHS. The more valued/informed opinions the better IMOm It is my mitral valve which is my faulty valve unlike most here who deal with AVR.

I certainly send you all best wishes. Please let us know how everything goes for you.

 

[knotguilty]

Please take a deep breath and be calm. I originally had an appointment with the "Top Doc" surgeon at U of P, (don't remember his name right now), he was the cheif of cardiac surgery. But because I knew of two people who had their surgery at Cooper, decided to go there instead. And I used the cheif of cardiac surgery at Cooper, name below. But that being said, I would put all my trust into one of the cardiac specialists in one of these hospitals. They see this everyday. Take your films with you so they can look at them. It seems like an awful odd thing for a doctor to tell you they rarely see this. Not all doctors have good bedside maners. You are doing the exact right thing by getting different opinions on it. It is your heart and make sure you are comfortable with what they are telling you. They should be able to explain it all in very easy terms. You will be fine.

 

[cmdm]

Thank you very much Jkm7 and knot guilty for taking time to read my concerns. You have given me other perspectives to consider. I should think myself lucky at this point and focus on the positive. I feel so connected to this site and am so happy to have found it. Thank you again for your support!

Dominique

 

[big_L]

I can tell you that my wife and I were quite angry with the cardiologist who first told me that I needed surgery. Yes - his bedside manner wasn't the best. However, it was a message that we needed to hear, we just weren't ready for it.

I agree that the statement about 'indigents' is not appropriate. This is hard enough for us without a comment like this. It seems that most doctors are in the position of trying to convince many of us that we need surgery, especially those that feel 'symptom free'. His comments seem to be cross-purposes to this. This is not your 'normal' cardio or surgeon, correct?

Talk to you cardiologist and surgeon. Get a second or third opinion. I went to four hospitals/doctors before I made up my mind.

 

[Rachel]

Then there’s the other side…..the first cardiologist that I went to told me that it would be 20 years or more before he’d recommend that I have surgery.

I had a 5.2 cm ascending aortic aneurysm at the time - and he knew it

I went to another doctor who referred me to a surgeon who got the surgery scheduled in 10 days…..I could have DIED if I had stuck with the first guy…. (I always joke that I had to practically beg to be cut open)

Good to get multiple opinions!

 

[AZ Don]

I don't know what qualifications the Dr. performing the Cath has, but he is not a surgeon and so I would weight his opinion accordingly (lower than the surgeon's). I would talk openly with your Dr's and ask them to justify why you need the surgery. If the new valve was not as good as your old one, as the Cath Dr. told you, then certainly they wouldn't be recommending surgery. It's not just a matter of what is better right now, but also what is better in the long run.

The Dr. that performed my cath didn't even understand why he was doing it. He told me that it was to see if my coronaries were blocked and should be replaced. I didn't believe him and asked my surgeon about it. While that may have been a secondary purpose the primary purpose was to closely examine the structures that my Dr. was to be operating on.

 

[cmdm]

Thank you so much to everyone who has commented. AZ Don, sounds similar to my situation. Reading all the entries has given me more perspective, and a whole new set of questions to ask my surgeon this Wednesday (and the following Weds when I have a consult with a second surgeon). Hope your feeling well AZ Don, looks like your surgery was not too long ago. Thanks again for your words of wisdom!

With a grateful heart,
Dominique

 

[AZ Don]

Hope your feeling well AZ Don, looks like your surgery was not too long ago. Thanks again for your words of wisdom!

Thanks. It's been 5 months and I can hardly tell I had the surgery. I was feeling good at 1 month and almost completely back to normal by 2 months. When it is time for your surgery, I'm sure you will feel better soon after. The waiting tends to be the worst part.

 

[tom in MO]

CMDM, your situation sound complicated. The advice to get a second opinion seems sound.

AZDon, actually the doctor may have been partially correct. My cathertization for BAV had two purposes, one was to see if there was significant blockage that needed fixing at the same time as my valve replacement. "When the engine is out replace the clutch if it needs it." The second reason was so my surgeon could verify the information he got from the echo and get a "look" before he cut.

I loved the first reason because it showed I had no blockage, thus my previous diagnosis of clogged arteries (by CAT) was incorrect. The nurses joked that I could order off the normal menu, except it wasn't available in the heart clinic portion of the hospital.