Mitral valve RE-repair questions

[pellicle]

Thanks for your reply, will read and check into it before she's see's the Dr this week. Again thanks.

lots of good people here who know more about different things than me, so always a good place to start asking specific questions.

Best Wishes

 

[Astro]

Thank you for finding this study for me.....I didn't want to ultimately have an in-depth discussion about this so much as just raise the level of awareness about this test which again made all of the difference for me....I wound up with Mild regurgitation (19 ML) and had no symptoms (decompensation) or dilation. I was lucky to come across this study and Dr. Uretsky (who is now my cardiologist) but maybe others wouldn't have found it. No one wants unnecessary surgery and some of the nightmares that can result from any surgical procedure never mind OHS.

I did find it odd that my cardiologist became so defensive about the MRI and fought with me before he'd give me the script.

Just another point of info....that's all....good intentions and regards for all.

Tom

Potentially you would have walked around for years thinking that you had severe regurgitation and therefore close to surgery. Much better to know that it is mild and only requires occasional observation.
You raised my level of awareness, thank you.
Next time I see someone on the forum saying that their regurgitation is severe but there is no dilation or symptoms, I will suggest a MRI.

Cardiologists have varying knowledge/experience with valves so a second opinion can be very important. For me it was the opposite. My first cardiologist said everything was going to be fine for at least 5 years. I have both aortic stenosis and aortic regurgitation. The stenosis had seemed to have levelled out/slightly decreased so the cardiologist felt that everything was fine. He didn’t consider the regurgitation as important. I could see that dilation was occurring rapidly, the regurgitation was probably worse on the scans than the cardiology was acknowledging, and I noticed a substantial decrease in exercise tolerance at the gym. Another cardiologist and set of tests confirmed the severe regurgitation and dilation. I would rather deal with the valve before permanent damage has occurred.

 

[Astro]

Hello I'm new to this forum. But my wife had her Mitral replaced because two Doctors said it needed to be replaced. When your not a Dr and they tell you all these things that could happen it scare's you. Dr Trento at Cedars did the replacement on my wife Nov 6 last year. They told us she would fill much better and have more energy. Far from it, she's tired all the time, so this pass week Dr Lala said one artery was blocked so they went up her arm and checked and nothing, no blockage at all. My wife is tired all the time and were losing trust with Doctors. I been married 47 years to her and hate what these Dr's are doing. Just my 2 cents.

Sorry to hear that your wife is having such a difficult time.

I agree with Pellicle that there are multiple potential causes of tiredness. Your wife is fortunate to have your help.

Best wishes

 

[tommyv44]

or probably more likely just deferred it.

Passionate should drive your thirst to actually get educated and obtain knowledge, instead it seems to have fueled an angry rejection of anything anyone says (for example in your post above:

"I didn't want to ultimately have an in-depth discussion about this so much as just raise the level of awareness about this test which again made all of the difference for me. "

Myself I'll go with the interpretation that Astro put on that.



I don't know about where you live but here the process is

1. Cardiologist
2. Surgeon

The cardiologist only makes recommendations, the surgeon decides if surgery is required, not the cardiologist. I've often said that the Cardiologist is not the one you should be listening to, its the surgeon.

In Australia we have the idea of a "second opinion" ... don't fight him tooth and nail, go see another one.

And I'd be cautious about assuming your the expert in matters because you've read some (quite complex) papers. What's your background? Are you academically trained?

Either way, I'm happy you're relieved but there's no reason to go about picking fights with us here just be cause you (appear to be) terrified by the prospect of sugery. Most of us here have had surgery and recovered and now have lives free of the degraded valve of Damocles hanging over our heads.

When the time comes I hope your surgery goes well

Best Wishes

You're the only one here that wants to fight! I'm trying to let people know there's another test they can ask about. What's your problem? Man are you nasty! And tell me how you know I'll eventually need surgery? I did get another opinion....did you miss that in your effort to fight with me? The second cardiologist looked at there MRI and the Echos and thought the first doctor was nuts. Does that meet your criteria?

Best Wishes

 

[tommyv44]

Potentially you would have walked around for years thinking that you had severe regurgitation and therefore close to surgery. Much better to know that it is mild and only requires occasional observation.
You raised my level of awareness, thank you.
Next time I see someone on the forum saying that their regurgitation is severe but there is no dilation or symptoms, I will suggest a MRI.

Cardiologists have varying knowledge/experience with valves so a second opinion can be very important. For me it was the opposite. My first cardiologist said everything was going to be fine for at least 5 years. I have both aortic stenosis and aortic regurgitation. The stenosis had seemed to have levelled out/slightly decreased so the cardiologist felt that everything was fine. He didn’t consider the regurgitation as important. I could see that dilation was occurring rapidly, the regurgitation was probably worse on the scans than the cardiology was acknowledging, and I noticed a substantial decrease in exercise tolerance at the gym. Another cardiologist and set of tests confirmed the severe regurgitation and dilation. I would rather deal with the valve before permanent damage has occurred.

Thanks for the kind words Astro....that's all I was trying to do.

Hello I'm new to this forum. But my wife had her Mitral replaced because two Doctors said it needed to be replaced. When your not a Dr and they tell you all these things that could happen it scare's you. Dr Trento at Cedars did the replacement on my wife Nov 6 last year. They told us she would fill much better and have more energy. Far from it, she's tired all the time, so this pass week Dr Lala said one artery was blocked so they went up her arm and checked and nothing, no blockage at all. My wife is tired all the time and were losing trust with Doctors. I been married 47 years to her and hate what these Dr's are doing. Just my 2 cents.

You have to be your own advocate today and get more than one second opinion....this is OHS not a small thing! I'm curious if they even mentioned the Cardiac MRI....did they? Again 2 cardiologists and she never has the MRI....why not?

I know why not because all they know is the ECHO and they're not open to another way! Who knows if she needed the surgery? What a sin. Finally if a doctor is telling you things to scare you you need to run from that doctor. My final comment and then I think I'm done here is why would you ask a surgeon if you need surgery? What's he gonna say....No. That's how he makes the beach House Payments.

You need to question your doctors and be sure if you're laying on that table you need to be there!

Tom

 

[tommyv44]

Hi and welcome



this story sounds frustrating, its entirely possible that there is some other cause for her continuing tiredness, has anyone checked for an effusion yet? I'd seek another Dr and see what they say.

Also I'm glad that your wife recovered well from surgery.

Best Wishes

Pellicle....what if she didn't need that surgery....we'll never know now without the MRI which it doesn't sound like they recommended or even told him about. Nice?

Tom

 

[pellicle]

Pellicle....what if she didn't need that surgery....

Speculation and conjecture in an absence of evidence isn't helpful or prudent.

 

[pellicle]

You're the only one here that wants to fight!

Where is my fighting? Or is asking questions fighting?

 

[tommyv44]

Speculation and conjecture in an absence of evidence isn't helpful or prudent.

Too late for the "Evidence"....she had the surgery! And the people that do the worst after the surgery are the people that didn't need it in the first place. These are doctors! They take an oath!

How about this right......I go for the MRI which I have no idea how it's going to turn out....if it says I have severe leakage I would have to have the surgery but it doesn't, thank God! My cardiologist who wrote the script and would naturally be on the list of people they send a copy of the test to never even calls me...can you believe it! it comes back with mild regurgitation and he never calls to say "Good Job" or "I'm happy for you" or God forbid "I was wrong"!

He had me walking around for 10 years thinking one day I'd need the surgery and worried about it without any need. I thought he cared but all he cared about was being right and sending another poor slob to the OHS Valve replacement Factory!

 

[Warrick]

So tommy have you had surgery? It says repair on your profile so a bit unclear here

Clearly its affected you deeply, as it does with us all
I know Id be dead by now for sure if I didnt have ohs, and I only had a TOE , my old valve looks like a sick oyster in the jar.

I had the opposite..”BAVD is nothing to worry about just have it checked in 10 years time” , which would be in another 2 yrs if it was up to my GP

 

[Protimenow]

I think we may be missing one thing here -- cost of the CMRI. Many doctors belong to groups or Health Maintenance Organizations (HMOs) that are reluctant to approve any 'expensive' procedure. When it's assumed that an echo or two or three could provide enough information for a diagnostic decision, it's awfully hard to get approval of a CMRI that, in theory, will only confirm what the echoes already said.

Doctors may be reluctant to order CMRIs because they know that they'll face a fight with some pencil pusher who has no knowledge, and minimal interest, in the actual medical issues. After a while, I suspect that many doctors are tired of fighting for 'new' procedures, so they just resist prescribing them. Echoes are 'okay.'

 

[tommyv44]

I think we may be missing one thing here -- cost of the CMRI. Many doctors belong to groups or Health Maintenance Organizations (HMOs) that are reluctant to approve any 'expensive' procedure. When it's assumed that an echo or two or three could provide enough information for a diagnostic decision, it's awfully hard to get approval of a CMRI that, in theory, will only confirm what the echoes already said.

Doctors may be reluctant to order CMRIs because they know that they'll face a fight with some pencil pusher who has no knowledge, and minimal interest, in the actual medical issues. After a while, I suspect that many doctors are tired of fighting for 'new' procedures, so they just resist prescribing them. Echoes are 'okay.'

How about the cost of the Surgery? Small price to pay IMO.

Main problem is the OHS Lobby full of cardiologists, surgeons and Hospitals that want the revenue and will do almost anything to protect it. I wouldn't be surprised to see the cardiologist who recommends the surgery to get rewarded from one or both.....makes me disappointed and disgusted. The only thing worse would be to get the surgery and not need it.

 

[Iggy]

UPD.
Happy Holidays!

Been meeting a surgeon at our local university hospital. Trying to learn as much as I can to make an informed decision on a valve type, since it's not likely to re-repair the valve. Also am hoping to get a second opinion with Dr. Adams' office in NY. Possibly going into surgery before Christmas. Is there's a risk flying transcontinental 10 days after surgery?