OPINIONS NEEDED: Mitral Valve Prolapse with Regurgitation

[Nupur]

Hello, so sorry to hear of the troubles you are going through to figure out the exact course of action. Regarding your degree of regurgitation, it is not always crystal clear from a 2-D doppler echo, which is what we get. I was told severe first, then switched to moderate, then moderate-severe.. the TEE is supposed to give you a better idea but it depends on the particular nature of the valve prolapse and the trajectory of the regurgitation. When you say 55% leak, I don't know if you are talking about ejection fraction? That's not the leak, and 55% is a good number I think. What are the chamber measurements on your report? Especially left ventricle (LV)? That is a measure of of if your heart is beginning to enlarge from the stress of pumping extra hard.

Who are you seeing at Stanford? A cardiologist or a surgeon? I saw a surgeon at Stanford (Dr Miller) even though my cardiologist did not think it was necessary. Dr Miller said he would also suggest waiting.. that was over 2 years ago, and I haven't gone back to him since then.

In terms of medication, there are none that helps the valve.. but if you have strong palpitations they might give you beta blockers which calm your heart and lower the heart rate, but it might also lower your blood pressure. I was prescribed a low dosage of Metropol (beta blocker) if I think it is not controlled by lifestyle changes and I have not started taking it. I try and recognize triggers (for me stress, PMS and lack of sleep are triggers), but even otherwise I do get very strong palps once in a while.

As for choice of valves, it's best to have a repair, and if not, they always recommend a mechanical valve for young (in cardiac terms that is) people.

Hope you get some answers at Stanford. Good luck!

 

[beespin]

Nupur- I'm not sure if its 55% leakage or ejection fraction...I'm still utterly confused by the report my dr. was reading. I'm gonna get all the info from my dr. when I see her Thursday. But if it is the ejection fraction, its relieving to know that 55% is a good number. I'm not aware of what the measurements on my chambers are, all I remember my dr. mentioning is that there is thickening somewhere. Eesh, I wish I knew better what was reported. =/

I'm not sure yet who I'll be seeing at Stanford. I've been referred by my dr. but I'm going to make sure to get appointments with both a cardiologist and a surgeon. When you say you havent gone back since your visit there, have you not needed to? Did you ever get surgery? What were you daignosed with??

I agree with the 'triggers' you have mentioned. I have all the usual symptoms but theyre pretty "moderate" I guess you can call it. The palpitations I experience are so random, and I have yet to pin point what it is that causes them.

Yes, I'd prefer repair over replacement which is why I would rather have sooner than later surgery. Thats what I've been in limbo about for a while now. Trying to figure out what my future holds as far as surgery, and what exactly is going on with my heart wince even after all these tests I still feel so unclear.

Thanks for replying and thanks for the luck. =)

 

[Michelle D]

And as far as the shortness of breath lying down and the chest pains, you may be having congestive heart failure, I'm no doctor just a guess. They may put you on a diuretic and a beta blocker with should help with those issues to a point. My regurgitation was at a 4+ severe, and I had really bad congestive heart failure so they rushed me to surgery. Waiting is the worst part so if they know for sure it is in your future but want you to wait a few yours I am very empathetic to you. If you want to move things along find a surgeon that thinks it is best not to wait, some will perform surgery earlier than others because they know the better your condition going into surgery the better you'll be coming out.

 

[Nupur]

I haven't had surgery yet. In the waiting room. My cardio is not at Stanford, she is at Palo Alto Med Foundation. I see her every 6-9 months, was getting echos every 6 months, but this time she said a year is fine. I insisted on seeing a surgeon so she sent me to Dr. Miller at Stanford, who is the leading surgeon there.

I also wanted to say that in my case, I had a lot of panic related symptoms right after diagnosis. It was hard to say what was related to the condition and what was an anxiety attack, so I took Xanax for a while.

Keep us posted!

P.S. I was told they don't operate on "moderate" once you are "severe" then surgery is an option, which baffles me because I am "moderate-severe" and of the same opinion of "fix it sooner than later".. but since neither my echo/symptoms have changed since 2009, I haven't gone back to the surgeon and demanded surgery : )

 

[beespin]

Michelle- Yeah, that what I was worried about...the possibility of having Congestive Heart Failure...but I would think if I had any real sign of it, my cardiologist would be far more serious about having me talk to a surgeon to begin with which I havent even done yet.

I have no idea what my regurgitation is at...I havent heard of the term "4+" or a number "+". It truly sucks that since I'm so new at this condition, I have no idea what questions to ask, or what anything means. All I know is what I'm feeling is scary and uncomfortable, and I want it to stop. Grrr...

And I feel like you do, that it should be better to have surgery done sooner than later while my heart is still 'moderate' and not literally giving out on me. They've told me that I need a strong heart for surgery too, and if they wait til its 'severe' wouldnt my heart be weak by then? Do you know why there are some surgeons that perform surgery sooner while the heart can be repaired, and others prefer not to? For some reason I get the feeling they'd prefer to wait until a replacement is needed because there is subsequent surgeries which leads to more work for them. Hopefully thats not the case, but not every doctor is honest.

Nupur- What has your echo determined for your condition?? What symptoms do you have? I'm wondering if our symptoms are similar, because I'm still in the blue as to what they've rated my regurgitation...whether, mild or moderate. And why they continue to brush off my symptoms. I dont know how they expect me to continue living with fatigue, chest pain, and palpitations. To me, thats not a good quality of life, and I'd prefer to fix it sooner than later.

 

[Michelle D]

You should get a copy of your records, that way you can find out your EF (ejection fraction) rate, and what number they gave to your regurgitation. 4+ is the worst, if yours is moderate than it is maybe a 2 or 3. Most surgeons won't work on it until it is a 4, but some will do a 3. The biggest concern about damage to your heart would be cardiomyopathy, I did have an enlarged ventricle before and right after surgery but at my last echo it went back to normal so even though I was in severe congestive heart failure and my mitral valve was leaking so badly that it might as well not have even been there my heart received no permanent damage.

I was going to send you a link but my computer is being ridiculous right now but google cleveland clinic mitral valve repair. They have tons of information about how they repair MVP and as far as what I remember my surgeon saying they almost always repair MVP valves, usually the ones that need to be replaced are valves that are severely calcified, stenoic or eaten up by endocarditus.

 

[Michelle D]

Oh and I must mention that there is a huge genetic factor in migraines, also pregnancy can change things too. My mother never had migraines until she gave birth to me. My brother gets severe migraines a couple times a week and so did my grandfather. I just get the weird migraine aura but not the actually headache part. I wonder if part of the nuerology involved in migraines can have anything to do with having a small stature. My brother is 5'4" 117 lbs, my mother 4' 11" and used to be 89 lbs until her 40s, my grandfather never made it past 4'10", yet I am 5'7" and 140 lbs and don't get the headaches. Who knows, I'm just speculating. My brother used to drink the shakes too, and never gained a pound.

Also with the shortness of breath you might want to go to a pulmonary doctor. That way they can rule out anything else and maybe they can help you in some way. I think the shortness of breath at night was the absolute worst part, regardless of the complications I had after surgery nothing was as horrible as not being able to breathe before the surgery, so any help you can get you definitely want.

 

[catwoman]

I have no idea what my regurgitation is at...I havent heard of the term "4+" or a number "+". It truly sucks that since I'm so new at this condition, I have no idea what questions to ask, or what anything means. All I know is what I'm feeling is scary and uncomfortable, and I want it to stop. Grrr...

And I feel like you do, that it should be better to have surgery done sooner than later while my heart is still 'moderate' and not literally giving out on me. They've told me that I need a strong heart for surgery too, and if they wait til its 'severe' wouldnt my heart be weak by then? Do you know why there are some surgeons that perform surgery sooner while the heart can be repaired, and others prefer not to? For some reason I get the feeling they'd prefer to wait until a replacement is needed because there is subsequent surgeries which leads to more work for them. Hopefully thats not the case, but not every doctor is honest.

1. The sooner you get into surgery (if surgery is warranted), all the better for your recovery.
I was in congestive heart failure when I had MV replacement and my recovery was more difficult than I expected. Pre-op, I was cyanotic, I was constantly yawning, severely fatigued, had difficulty sleeping, and even I could hear the MV leaflets flailing away without a stethescope.
When I had a heart cath the day before my surgery, the cardios kept saying, 3+ 3+ 3+. Later that day, I was put on Lasix to relieve the fluid buildup.
In contrast, my husband had MV repair 4 years ago, due to a head-on car accident a year before that, and his recovery was fairly speedy, even with the a-fib he had for several months. Because his injury came when his sternum was fractured in the car accident, he opted for a right side thoracotomy instead of a sternotomy. (The sternum fracture was quite painful for him.) He was not in CHF pre-op, so he was light-years ahead of me in recovery.

2. Surgeons don't want to wait until a replacement is needed. They want to preserve the native valve, if possible.

BTW, we consulted two surgeons for my husband's MV repair -- my surgeon and the one who ultimately did the surgery. After the 2nd consult, our cardiologist said to stop shopping and get into the OR. Any further delays would compromise my husband's health.