Moderate Mitral Regurgitation Questions

[Elle]

Hi, I am new to the forum. I'm 33 years old and my name is Elle. I'm flying to the Cleveland Clinic tomorrow to have an Echo since my Mitral Regurgitation has progressed from Mild to Moderate within 1.5 years and I'm experiencing symptoms like shortness of breath, dizziness, harder to breathe when lying down, fatigue, etc.

I am hoping they'll agree to repair my Mitral Valve. Could they say the regurgitation has to be "severe" before they'll repair it?

I'm so worried. I have a 4 yr old son and this is effecting every part of my life at this point. I am constantly out of breath if I even get up to walk across the room or exert myself in any way. I am tired all of the time. Going to the grocery store is a nightmare. I am out of breath and sweating the whole time.

Here's my Echo report from August 2006 - What do you think?

Aortic Valve: Root Diameter is 2.0
Left Atrium: 3.4 cm
Left Ventricle, End Diastolic Diameter: 4.5
Left Ventricle, End Systolic Diameter: 3.2
Septal Thickness: 1.1 cm
Posterior Wall Thickness: 1.1 cm

There is moderate prolapse of the anterior mitral leaflet into the LA noted on the parasternal views. The anterior mitral valve leaflets are moderately thickened.

There is moderate prolapse of the posterior mitral leaflet into the LA noted on the parasternal views. There is moderate thickening of the posterior mitral leaflet.

There is moderate mitral regurgitation noted.

The aortic valve appears normal. There is normal right ventricular cavity size. The right atrium is normal in size. There is normal left ventricular chamber dimension, wall thickness and systolic function. The ejection fraction is 60%.

The tricuspid valve appears normal. There is trace tricuspid regurgitation noted.

The pulmonic valve appears normal. There is no significant pericardial effusion.

There is Aortic Valve Sclerosis with normal opening.

Doppler and color flow mapping demonstrated a moderate degree of mitral regurgitation which is mostly a posteriorly directed jet.

(1.5 years ago all of the above areas marked "moderate" were at the "mild" level. Also, my ejection fraction then was 55%.)

Thanks for any input - I really appreciate it,

Elle

 

[Adrienne]

I think they take into serious consideration the fact that someone is symptomatic, even if the measurements and amount of regurgitation don't seem to warrant surgery.

My case was the opposite until the very end. I had severe mitral regurgitation, a dilated left atrium, but was not really symptomatic (at least I didn't think so then).

It could be that the fact that the amount of regurgitation got worse so fast makes it hard for your heart to compensate, and maybe that's why you are having symptoms. I wouldn't be surprised if other measurements began to change fairly quickly if something is not done. I am certainly not a doctor so do not take my opinion as an authority, but I really think that the fact that you have all those symptoms will be taken into account.

 

[geebee]

Welcome Elle,

I agree with Adrienne, symptoms can be very indicative of whether you need surgery now rather than later. Be sure and let the doctors know all your symptoms and the severity of those symptoms. This is not the time to be "tough" and minimize how you are feeling. Write things down so you won't forget when you are asked questions.

I had a cardiac cath in 1979 that read almost exactly as your echo did that you mentioned. I was fairly symptomatic but didn't want to be a complainer so I did not really explain how rotten I felt. Also, in retrospect, my limitations came on so slowly that I am not sure I truly knew how much my life had been limited.

About 6 months later, I passed out and was unconscious for about an hour. Armed with my cath results and a new echo, I went to see a surgeon in New York City. Based on the tests, the surgeon was convinced he could repair my valve but it basically fell apart as he was working on it and I woke up ticking.

Later he said he did not understand that my symptoms were as bad as they must have been with a valve that deteriorated.

So keep in mind that things can progess very rapidly once you are symptomatic. It seems that surgeons are more inclined to operate earlier these days to avoid permanent heart damage. If you are determined to get the surgery behind you, be sure and tell the doctor that when you meet.

I wish you well and hope things go smoothly.

 

[MikeHeim]

Some people have severe regurgitation with few symptoms (this was me), and others have severe symptoms with less than severe regurgitation. It all depends your body's ability to compensate for the leakage.

With symptoms as severe as you describe, I personally can't see any reason to wait. If you can't go the grocery store without getting severely SOB, your cardiac measurements are irrelevant. Make sure you are very clear with the Cardiologist at the Cleveland Clinic about all the issues you are having. Ultimately, it appears the surgery is in your future, and there really is no reason to postpone it and be forced to continue living with as many problems as you're having.

One other factor that should be considered is that Mitral repairs get more and more difficult as the valve degrades and leakage gets worse and worse. If you end up meeting with a surgeon and they decide that your valve is repairable, they will probably want to push for surgery sooner rather than later.

 

[Marguerite53]

Welcome to this wonderful community. Of course you are scared!! But you have come to the right place, because all of us were scared and we know just how you feel!!

Your choice of Cleveland Clinic is obviously a wonderfully educated one on your part, so you are already making great choices. They are very prepared and experienced in handling cases such as yours. Please go in with an open mind. Sometimes they just don't know what they're dealing with until they have you in the Operating Room.

Your symptoms may be significant enough to warrant some action, only they will know. Be patient. Weigh all your options.

They pretty much have this science down to an art form. You have huge statistics in your favor. You are young and can bounce right back to normal after a surgery of this intensity. Honest!!

When you have new questions, start a new thread. You will get a ton of love and support here. Don't be afraid to ask us anything.

Keep posting. We'll be watching for your posts! Take care. Don't worry too much. Your best decisions will come from a relaxed mind. Read as much as you can here.

You're doing a good thing!! Good for you for staying on top of things!!

Marguerite

 

[bvdr]

Hi, and welcome to this forum! I'm glad you are pursuing a solution to your symptoms, Elle. I think how your symptoms are affecting your life is paramount in evaluating whether or not you are at the point for surgical intervention. If there is something identified that needs to be repaired or replaced, as there indeed is, then why wait until you reach the point of being almost non-functional? Many surgeons would rather operate earlier while the heart is still in good shape. I hope you can have a repair and more and more they are able to do just that. Mitral valve surgery can often be done via a heartport that avoids having to have the sternum opened. You might do some research into that so if it is brought up you will already have some idea of what they are talking about.

I didn't look to see if you listed what medications you are on but I just wanted to add that sometimes increased shortness of breath can be a side effect of some medications.

 

[EireCara]

*HI Elle.......

*HI Elle.......

*Hi Elle....I also have moderate Mitral Regurgatition......like you I have SOB, not a lot of energy, chest pain etc. I was wondering does anyone know, what should the Aortic Valve Root Diameter measurement be ?? Jacqui

 

[susieq14]

Hello Elle,

Welcome to VR.com! although I'm sorry you have to be here. I'm also sorry that you are feeling so terrible.

Have you known about your MR for very long? I was just diagnosed in August 2004. I also have moderate MR but I have no symptoms whatsoever; however, my numbers are very similar to yours and in some cases worse.
Aortic Valve: Root Diameter is 2.0 : Mine went from 2.4 to 3.0
Left Atrium: 3.4 cm : Mine went from 3.7 to 3.8
Left Ventricle, End Diastolic Diameter is 4.5: Mine went from 4.9 to 5.4I was told that normal is 5.6
Left Ventricle, End Systolic Diameter is 3.2 : Mine went from 2.7 to 3.3 I was told that normal is 3.4

My cardiologist keeps telling me not to worry but that's not the message I hear here at VR.com. It is all so very confusing. I'm very happy for you that you are seeing a specialist at Cleveland Clinic. Be sure to have all your questions and concerns written down so that the doctor takes you seriously and do not feel intimidated to keep asking your questions until you are totally satisfied and understand the answers. Someone once said in another thread here that you should not Smile and don't chatter with the doctor. I think that is important advice as well. Do you have someone accompanying you? That would be helpful to have another pair of ears to listen if possible.

In my humble and totally uneducated opinion, I would think that having the surgery sooner rather than later when damage has been done and you are in better shape now than then would be the optimal but who knows what the experts will say.

You will be in my prayers and thoughts tomorrow. I hope all goes well and you get some good answers.

Take Care!

Susies

 

[MikeHeim]

My cardiologist keeps telling me not to worry but that's not the message I hear here at VR.com.

You are correct in that this is usually a pretty common sentiment around the site. When I was diagnosed, I was of the opinion that I needed to get fixed ASAP. I absolutely hated the idea that something was wrong with my heart and would at some point begin causing permanent and irreversable damage. At that point I didn't even have any symptoms that affected my everyday life. The only indication that there was a problem was that I suddenly had major issues with wheezing while I was sprinting or strenuously working out. Even with my light symptoms, I didn't see any reason to avoid surgery. It wasn't as if the regurgitation was going to reverse itself if I ate right or took medication. If it was inevidable anyway, I might as well get it out of the way ASAP and move on with my restrictionless life once I was fixed on the other side.

 

[Elle]

I just received a phone call from the Cleveland Clinic Heart Center. I called there yesterday because my appointment is with a Cardiologist that just does Imaging. He would be deciding which tests I need and doing the interpretation to give to the surgeon. I was concerned because I was only scheduled to meet with him & do the tests and would not be able to see a surgeon on this trip. That means another trip and probably months before I could get in ....

So, the nurse I spoke with yesterday actually spoke with the Imaging Cardiologist then called and made an appointment for me to see a surgeon right after my echo .... tomorrow!

I thanked her like crazy. I'm still in shock that she really went the extra mile like that.

I think the Cleveland Clinic is where people should try to go if they should. I'm flying there tonight, staying in the Intercontinental Hotel that is attached to the Cleveland Clinic by a walkway, then having my tests and appointments tomorrow and flying back home tomorrow night. My roundtrip flight to Cleveland only cost $98. This is an easy trip to make. Just fly in, take a cab to the hotel, order room service, wake up the next day and have your appointments, take a cab back to the airport then fly home. I've made this same trip to the Cleveland Clinic twice before. Once to see a Cardiologist about my Tachycardia and another time to see Dr. Fouad in the Syncope Clinic for POTS (Postural Orthostatic Tachycardia Syndrome).

So, I'll update y'all when I return! My biggest worry is all the "normal" observations seen on my last echo in August, will he say it has to get worse in those areas before he'll operate? Also, will he attribute my symptoms to POTS, which has similar symptoms. I am 90% sure it isn't just POTS. I've had that for years and it's never been as bad as this. Also my Echo went from "mild" to "moderate" findings within 2 years.

Thanks for all of your support, this board is filled with some really wonderful people.

Elle

33 years old
Moderate Mitral Valve Regurgitation
Inappropriate Sinus Tachycardia/Supraventricular Tachycardia
POTS (Postural Tachycardia Syndrome)

 

[aussiemember]

Hi Elle,

Glad that you are getting to see the surgeon at the same time. I have moderate/severe regurgitation with numbers similiar to yours but with no symptoms. My cardiologist has already said that if I DID have symptoms with those numbers he would be recommending surgery - apparently symptoms is one of those major things they take into account. So make sure you push for some answers from the surgeon as to what is the best course of action to take. Good luck and let us know how it all goes!!! Jeanne

 

[Phyllis]

So glad you are getting to see the surgeon as well. Be prepared with a written list of questions ( you tend to forget in the rush of it all ) and have a safe trip. We look forward to hearing the results when you return.

 

[debster913]

Hi, Elle--
I had mitral valve repair six months ago myself. Very much like you, I was symptomatic. However, my cardiologist diagnosed me with moderate MR, and the surgeon diagnosed me with severe. That doesn't mean that the surgeon will wait until you're severely leaking until he repairs your valve. Most surgeons want to fix the valve before it gets any worse and your chances of a repair are slim to zilch. Your symptoms alone suggest to me that it's time for your valve to be repaired. I thought my symptoms were in my head for a while, because my cardio actually believed that there was no way that I could have been having symptoms at a moderate status. But I did, and I feel so much better now since I've had my valve repaired.

For what it's worth, recovery after heart surgery can be tough. It can be a physical and emotional rollercoaster, but at te same time, you'll never feel better.

All the best to you--
Debi (debster913)

 

[Elle]

Debi, Thanks so much. That makes me feel better. I'm getting pretty nervous about tomorrow. I'm actually at the hotel in the Cleveland Clinic right now and am really anxious about tomorrow's appointments. I hope he'll say he'll repair it sometime really soon. I can't imagine dealing with this much longer, just waiting for it to get bad enough to repair. I'll post back when I get home tomorrow night or Friday.

Elle

 

[PegB]

Hi Elle,

I had mitral valve repair surgery at Cleveland Clinic this past Sept. (We also stayed at the InterContinental Hotel!). They take such good care of you up there. I was referred by my local cardiologist, so all of my cath reports, ECHOs, TEE was sent up for the surgeon to review and make a decision on whether to do surgery. They called my regurg. severe here, but the surgeon there said it was only moderate and I could wait another 6 mo. or so if I wanted. I think they see so many REALLY, REALLY BAD valves up there, that your basic regurge is nothing for them to get excited about. I felt so confident in the entire CC staff, that I really wasn't even nervous before my surgery. I'll be anxious to hear what they recommend for you when they get finished with you. Every person who took care of me there was so nice and personable.

Try to relax, and just bask in the knowledge surrounding you.