Is Valve Repair or Replacement in my future?

[DLH64]

Just got my echo report today and have not seen a cardiologist yet. Does this sound like I am headed for a repair or replacement?

Asymptomatic

RV 1.8
AO 3.6
AV 2.1
LA 4.2
LVDd 6.1
LVDs --
IVS 1.3
LVPW 1.2

EF 60-65%

Mild left atrial and left vent. enlargement
moderately to severe eccentric mitral valve regurgitation
Jet transversing along the anterior mitral leaflet, the interial septum to the distal aspect of the left atrium and pulmonic vein sampled.
The jet is narrow and demonstrated.

minimal to mild tricuspid valve regurgitation.

[CCF-M.D.-MJM]

Hi DHL64,

This is an area of evolution in cardiology and different institutions approach this problem differently.

Whether the timing is now or the future (perhaps not too distant future), I think you are headed for a mitral valve repair or possibly replacement.  They will probably try a repair first, if it is not feasable, they will replace the valve.

I hope this helps.

[DLH64]

That should read moderately severe to severe.
It also states there is at least mild myxomatous degeneration of both mitral leaflets with bileaflet prolapse of a moderate degeree more so involving the posterior leaflet.

[Konopka1955]

Hi,  I read your post and just thought I'd mention that there is a great web site for valvers.  www.valveremplace.com  - if you should need surgery - alot of people on this board have been helpful.  I had to have a mechanical mitral valve inplanted.  I'm feeling alot better since my surgery.  But my left ventricle has remained enlarged. But others have decreased after they had their surgery.  I guess its a hit or miss.  

But the surgery has made me feel alot better than previously. I started getting symptoms about a year after my echo showed moderate to severe regurgitation.  Then it went downhill real fast - symptoms got so bad.  Before my surgery I couldn't walk, talk and breath at the same time.  If you need surgery - I wish you the best - get to a good hospital that does a big volume of valve surgeries.  I don't have to tell you CCF is a fantastic center.  If your lucky to get in and you can get in - then you know your getting the best care in the country.  

Ask lots of good questions when you see your cardiologist.  Write your questions down before you go and bring someone with you if you can. But check out the valvereplacement board.  Lots of good basic info out there.  

Best Wishes
Marilyn

[nymomof5]

Is the reason you couldn't walk, talk, breathe at the same time due to shortness of breath?  Did you have any other symptoms when you got real bad?  I have moderate/severe regurgitation and have been told I will need surgery "down the road" one day.
How fast did you go downhill?  Is there a reason your regurgitation got worse so fast? Ellen

[EchoTech]

The problem is that is somewhat hard to assess the degree of mitral regurgitation when the jet is smacking around on the atrail wall versus straight down the middle.  Most likely they will wait and see how you tolerate it and if it affects your quality of living and if it has any adverse effects on your heart.  Your left ventricle is mildly dilated, so I'd guess that would put in a sooner than later catagory for valve repair.  Generally speaking, they'll try to repair it if at all possible since the results are generally better than valve replacement.

[DLH64]

In doing research I thought I might fall in the sooner rather than later since enlargement has begun.  To further complicate things I have Malignant Hyperthermia and some other Metabolic/Muscle Disorder that has not been exactly pinpointed.  I have had 2 deep muscle biobsies, 1 punch biopsy, 1 skin biopsy and multiple other tests at Emory and University of Texas Southwestern.  I have always been an active cyclist, but after a MH episode I began to get severe pain in my quads on my rest days.  I found out it was because the intense exercise was causing severe muscle breakdown.  My CPK's are always elevated around 2-3x and have jumped as High as 69,000.  Unfortunately all of this sometimes tends to scare physicians\surgeons.  Due to my active lifestyle and age (40) I would like to have the repair done and sooner rather than later.  I am on an local HMO and my primary physician callled last night to refer me to a cardiologist so hopefully I will see him soon.  Being on this HMO will more than likely limit my choices, I have seen where the repair can sometimes be done by going in between the ribs under the breast without having to crack the chest open.  That would be my first choice due to recovery time, but as far as I know they only crack the chest here in Tallahassee.

[DLH64]

The above comment was more info for CCF-MD.-MJM and evryone else of interest.

[Konopka1955]

Hi Ellen,  The reason I couldn't walk, talk and breath in all probability was because my left ventricle was enlarging more and more over time.  My ejection fraction was not increasing as I exerted myself.  So I think that's why I wasn't able to breath when I exerted myself.  

I can't say there is a reason why I was not having severe symptoms a year or so before my surgery.  But I know my left ventricle wasn't as enlarged a year prior to my surgery.  I don't think there was anything I could have done to delay the surgery - if that's what you mean.  I was told if you wait too long and your left ventricle enlargement is severe - you may not benefit as much from the surgery.  You don't want to wait to long and you don't want to go to surgery to soon.  

I don't know that symptoms necessarily is the 100% factor in when they do the surgery.  I think some people have no symptoms and yet they need the surgery.  But I could be wrong.  I just know I needed it badly by the time I got in there.  

Why I went downhill so fast I don't know - but I heard it can happen.  I did have to have echocardiograms every 6 mos per my cardiologist recommendations.  They kept a good eye on me..  Once your left ventricle enlargement gets to a certain 'number' and your EF goes down to a certain percentage then I guess your within surgery guidelines.  But alot of variables also are important - like symptoms and overall heart condition..  I want to let you know I'm not a doctor.  The doctors make the decision to do surgery or not.  They don't like to go in unless its really necessary.  Doing various tests will help to see if it is.  

www.valvereplacement.com was helpful before and after my surgery.  It gave me a general idea of what open heart surgery was like.  They didn't scare me to death either.  

Good Luck Ellen and keep us posted.  
Marilyn

[nymomof5]

Thanks, I guess I was just wondering what things I might look for to let me know that it might be time for surgery.  I know my doctor mentioned swelling of the ankles, shortness of breath, and syncope.  Was just wondering what someone who had valve surgery, had as far as symtoms. Although on another website, it has been mentioned that people with bad regurgitation seem not to have alot of symptoms alot of the time. Anyway thanks for your posts.  Its people like you, who have gone thru this surgery already, that make the thought of surgery easier for someone like me who knows she is gonna need surgery one day.

[smp48]

Hi Everyone
After reading all these posts about valves I am quite confused. I had my appt at CCF this week for a second opinion. I was a rhuematic fever "kid" in the 1950s. I have started having heart problems and found out my mitral leaflets are thickend. Both my primary Dr. and the CCF Dr seem to be blowing this off. I also have mild to moderate coronary artery disease and 2+ tricuspid regurg, borderline left atrial enlargement. All I want are my questions answered, Why am I having chest pain and fatique, can't even mild valve problems cause symptoms? The Dr at CCF didn't even listen to my heart, didn't look at the studies I took along and just told me I am at high risk for a heart attack, and must control my blood pressure. All I want to know is, do I have rhuematic heart disease and are the valves going to get worse?
I am a 57 year old female non smoker 5'1" 128 pounds.
Any encouragement would help. Thanks

[Momto3]

Hello,

I think the doctor can tell if you have rheumataic heart disease by looking at an echo.  If you are not comfortable with the first cardiac assessment, maybe a second opinion will help. Take a list of your questions with you.  Sometimes, I think, people who are so specialized in their fields forget that we, patients, need more explanation and reassurance. There are tons of great doctors who would be happy to discuss your situaiton with you until you understand.  Are you going for follow-ups?  Did the doctor prescribe blood pressure lowering medicine?

connie

[smp48]

Thank-you for your response. Yes I am on 40mg linsinopril, 25mg hydrochlorot, toprol xl. I go for follow ups to get my BP checked every three months.
SP

[EchoTech]

I was under the impression that they only do the limited cracking of the ribs on the side for specific blockages on the coronaries on the front, but I could be wrong.  I don't get to go to the operating room as much as I used too.

[EchoTech]

the quick answer is that mechanically, a valve either stays the same or gets worse.  Functionally, reducing your blood pressure reduces the leaking that might be there. Without looking at the echo, no one on the internet knows for sure.  The blood pressure control helps with your risk of heart attack.

My guess as to why they aren't doing anything is that they are taking a wait and see approach.   This is because they might think that the valve and coronary disease is mild enough, at this point in time, that more harm than good would come from an intervention.  That doesn't mean the situation will not change, but as for a time guideline, I can't really help you.  my guess is that they willl check up on you with serial tests to see how things are going.  Hope this helps a bit.

[smp48]

Thank you that makes sense,and I am making sure to keep my BP in check. One thing more is that the Doc wants me to to go on Zocor even tho my Cholesterol is ok right now. I am really afraid of these statins, as I also have fibromyalgia, and already have many muscle aches and pains.
Have a nice day everyone!