MV regurgitation with prolapse

[oztrek]

Hello
47 year old, 2.5 years ago I was diagnosed with MV regurgitation with prolapse. I dont have symptoms like shortness of breath .
6 months before MV diagnose I was diagnosed with High Blood pressure, which I never had in my life.
I dont have any major illness .
Since visited cardiologist first time , I had 5 echocardiagrams and 2 TEE's , as well as some other procedures like Carotid etc.

In those echo's the result was medium/severe mitral valve regurgitation with prolapse
My cardiologist kept telling me we should watch and wait , I moved to a new city and now my new cardiologist says I should have the surgery because LV got bigger.
He asked for a TEE which confirmed :
Severe Regurgitation with posterior leaflet prolapse , likely a fail segment
LV: Moderately dilated
LA: Moderately dilated

I also started to have PVCs (6000 a day) since oct 2021
I wanted to ask whether anyone had similar experience? Any tips?


A few things dont makes sense to me.
First of all some of the echos said I have posterior prolapse some said its anterior some said its bi-leaflet.
1) How come they cant identify which leaflet?
The last TEE says "likely a flail segment" , so they are not sure again whether I have a flail or not

2) The LA and LV sizes were going up and down +- 10%, is this human mistake when measuring?

3) The echo's were alternating between moderate/severe and severe regurgitation, again is this human mistake ?


Below are the echo details:


8/2020 echo:
EF :57%
LA :4.2 cm ( dilated)
LVIDd: 5.5 cm
Moderate/Severe Regurgitation
moderate prolapse of mv leaflets

2/2021 echo:
EF: 60%
LA:4.3 cm (dilated)
LVIDd: 5.1 cm
Severe Regurgitation
Anterior and posterior prolapse

6/2021 Echo:
EF : 60-65%
LA:3.7
LVEDD: 5.3
Moderate/Severe Regurgitation with posterior leaflet prolapse


11/2021 Echo:
EF : 65-70%
LA:4
LVEDD:5
Severe Regurgitation ,
Anterior leaflet prolapse, thickened leaflets


5/2022 Echo:
Dont have all the details but the dr said LV is dilated with severe regurgitation


6/2022 TEE:
EF: 65-70%
Severe Regurgitation with posterior leaflet prolapse , likely a fail segment
LV: Moderately dilated
LA: Moderately dilated


I started to have arythmias in oct 2021, the holter shows 6000 PVC
No AF



In the past :

in 2002-2003, I had arhytmias happening once a month , it was like : my heart rate goes up to 130 for a few mins and suddenly dropping to regular rate. At that time I visited a cardiologist, they put me on holter and stress test. They said everything is good. This artyhmia disappeared in 2006 or so ..

2010, My then primary care dr heard a murmur and asked me if I had any heart problems, I told him the arythmias that happened before. He didnt refer me to cardiologist.


Appreciate any tips suggestions

 

[ValveAdmin]

Welcome to the forum. Knowledgeable guys will surely be along soon to answer your questions.

 

[Geofd]

Hello I was diagnosed with severe mitral valve regurgitation and prolapse, April 2021, they had me scheduled for surgery by July, surgery was in Sept, I really didn't have many symptoms, maybe out of breathe sometimes,I had (ring) surgery they went in thru my ribs, was in the hospital about 5 days I had it done at mass general in Boston, I just trusted them, and did some research,asked, alot of questions

 

[oztrek]

Thanks for sharing
So it was robotic surgery I assume? Was it a repair or replacement? Did you check the dr's statistics before?

 

[Geofd]

I think they called it thoracic surgery I have a 3-4 scar on my right rib cage just under my arm, I did not do any research on the Dr, my cardiologist told me he was the one everyone wants , it was a repair called ring surgery

 

[pellicle]

Hi and sorry to read this

Hello
47 year old, 2.5 years ago I was diagnosed with MV regurgitation with prolapse. I dont have symptoms like shortness of breath .
6 months before MV diagnose I was diagnosed with High Blood pressure, which I never had in my life.
I dont have any major illness .
Since visited cardiologist first time , I had 5 echocardiagrams and 2 TEE's , as well as some other procedures like Carotid etc.

initially I didn't reply to this because I am not a cardiologist and all those numbers are stuff which I'd have to google to make sense of.

So, as you say:

Appreciate any tips suggestions

I'll suggest the following

• I can't tell you how many ultrasounds, ECG's, X-Rays, CT's, MRI', ... I've had but that's not really what matters and its not a metric in and of itself. Its just what happens when we're trying to see what can't be seen with our eyes
• you ideally (in my view) do not want to be symptomatic when you go have surgery you want to have the best strength and fitness you can so that you can make the best go at recovery.
• I don't know if there is any correlation between previous arrhythmias and your existing measurable valve disease
• you should not shy away from what ever is the best surgical technique to enable the surgeon to to the best possible surgery on you. Be this SAV or what ever. Just don't go looking for some perceived method of minimising the entry wound site for some reasons which you may not really be qualified to assess.

Lastly there is not enough data in your "about" (or as I call it, your "bio" to make any sort of assessment without resorting to inferences. So even though you posted this:

47 year old, 2.5 years ago I was diagnosed with MV regurgitation with prolapse. ​

at the start of this thread I suggest you put it in your "about" because people here will read that when looking for information on future questions. Sometimes knowing what country you're from helps answer too, I see Oz in the username and infer Australia (where I'm from) but see simply "nj" in your location which could mean all manner of things. I would advise against idiomatic references (based on assumptions of what the reader should infer).

Nobody here is really qualified to assess if you need surgery yet (although it sure does seem like you do), so I would say you should go with the views and opinions of your medical team (and your should put greater emphasis on what a surgeon says than a cardiologist.

Lastly no matter how "shocking" this revelation is, its important to just get it done and get into recovery when its needed. While one should not specifically aim for multiple surgeries it can be that more than one is needed (I've had 3 in my life, all nicely spaced apart by "around twenty years").

What I see is that you need to identify a surgeon and start identifying which way you'll go with valve choice.

Best Wishes

 

[jmb1997]

Hi - We have a somewhat similar story. I'm a 47 year-old male and just had minimally invasive mitral valve repair surgery in Boston at Brigham and Women's Hospital.

I first felt some palpitations even while resting when I was in college in the late 1990s and the doctor I spoke to was very dismissive and basically told me I wasted his time. In 2010 I had switched to a new PCP because he had great reviews and his office was also halfway between my office and my home. By chance it turned out that he was a cardiologist who for some reason only had patients who were police officers with high blood pressure. Talk about specializing! I also was able to choose him as a PCP by mistake as a computer had something open by accident. His nurse tried to get rid of me, but he decided to take me on as a patient. In my first visit with him he heard a little murmur and being a cardiologist sent me for an echo which confirmed a mitral valve prolapse. Talk about luck.

However, while I'm grateful he found it, he was a lousy PCP!! The man was obsessed with the heart. I remember once going to him due to my first-ever case of constipation along with pain on the right side that was descending slowly. He decided to tell me a story about how he was once in a hotel before talking at a conference and when he woke up his shower wasn't working, so he went to the pool and shaved there as a lifeguard yelled at him. When he was done the story he said, "So you're having chest pains and shortness of breath?". I said no and repeated my issues. He then said, "It's probably just a bug. Let me know if you're still sick in two weeks with that. Let's do an EKG on you now, though." When I complained about my pain he then started looking at my fingernails, which I suspect he was doing to check for splinter hemorrhages and he asked me if I'd recently had dental work because maybe an infected dentist gave me a disease that was in my heart. He also tried to get me on the operating table back in 2010 though the results of my echo said my condition was minor at the time. Needless to say I switched to another PCP who was more reasonable.

I was monitored by the PCP and a cardiologist he recommended to me since then until I decided to do the minimally invasive surgery as my left atrium was starting to dilate a bit (I had TEEs done at multiple locations to make sure I got the same story). After a TEE early this year I was told there was a 95+% chance of repair by a surgery I trusted at Brigham and Women's Hospital and I pulled the trigger and I figured to do it now while I'm relatively young and in good shape. Other than some PVCs now and then (which usually following adrenaline rushes) I was asymptomatic and was riding my bike every day and walking to the appointment at the hospital (about 1.5 miles).

Human errors do happen on testing for these things, so it's always good to push on your cardiologist or get another opinion, or to ask them to re-measure. About 3-4 years ago I had a stress echo where you run on a treadmill and then they do an echocardiogram on you. When the results came in my cardiologist told me that my heart was enlarging at a rapid rate since my last echo and it was now in the upper-most regions of a "normal" size. She said I needed surgery right away and referred me to a surgeon (not the one who did my surgery). I met the surgeon and he realized that someone mis-measured my heart size by a decent amount. My cardiologist never double-checked the measurement (apparently done by a technician as I was on the table) until the surgeon told her this and then she took a look herself and realized he was correct. I asked for another echo just to make sure and this confirmed the mis-measurement.

I'd also shop around for a surgeon if you have a few choices in your area. If you're in a region that doesn't have someone close by that does the surgery you want (like if you want minimally invasive or specifically robot minimally invasive) then you can always travel to places to get this done right. In my cardiac recovery wing each nurse they'd assign me would ask where I was from as most people were from out of state.

Best of luck!

 

[pellicle]

Hi

This reads like a comedy script

.... By chance it turned out that he was a cardiologist who for some reason only had patients who were police officers with high blood pressure... His nurse tried to get rid of me, but he decided to take me on as a patient.

I remember once going to him due to my first-ever case of constipation along with pain on the right side that was descending slowly.
When he was done the story he said, "So you're having chest pains and shortness of breath?". I said no and repeated my issues. He then said, "It's probably just a bug. Let me know if you're still sick in two weeks with that. Let's do an EKG on you now, though."
...
Needless to say I switched to another PCP who was more reasonable.

Just wow

 

[jmb1997]

Hi

This reads like a comedy script


Just wow

Adding to the comedic element, this guy looks like Mr. Moneybags from Monopoly, right down to the bushy white 'stache.

I only went to him three times over a course of two months before I bailed, but the laughter lives on.

He's still practicing in Boston and is also a professor at a university school of medicine in the city.

 

[dornole]

Hi Oztrek. I have mod-severe mitral stenosis and mod regurgitation, rheumatic valve. First dx when I was 34 with severe mitral stenosis (causing congestive heart failure symptoms while pregnant with twins), had a valvuloplasty repair that left me with moderate stenosis and moderate regurgitation. I have been in watch and wait mode for 20 years now and the stenosis is edging toward severe. Couple comments:

1) LV dilation is bad and seems to be the primary thing they are watching for with me. If it dilates, that's irreversible and can kill you. My husband's coworker also had mitral valve issues and died at age 59 from this after skipping her echos because she felt fine. By the time she was symptomatic it was too late. I still have completely normal left ventricular size, normal wall thickness, normal global systolic function, calculated EF of 57 %. Left atrial size is severely enlarged but they are unconcerned about that. For mitral valve my understanding is that ejection fraction is nowhere near as helpful as it is for aortic. It's the LV size or symptoms that are the most crucial "go now" indicators.

2) Regarding changing data, yeah my data has fluctuated, this is just limitations on the precision of testing not really human error. For example I have gone back and forth from moderate to mod-severe. Also, something can be "moderate" based on one criterion and severe based on another. For example in my most recent echo the mitral stenosis was described as Moderate based on valve area (planimetered valve area 1.5 cm2, by pressure halftime 1.3 cm2) but severe based on pressure gradient (mean pressure gradient 12 mmHg at 68 bpm). As you've experienced, the normal response if the echo looks sketchy is to do an TEE and get a closer look.

If I were confirmed by TEE to have LV enlargement, my cardio would definitely be referring me for surgery; both my cardios have been in total accord on that point and it doesn't seem like it's a debatable issue. IMO your cardio's recommendation and the variations in your echo data look legit.

 

[oztrek]

I visited a surgeon yesterday and he seems moderately experienced.
Does anyone know a surgeon in North East with lots of MV repair experience

 

[Geofd]

Yes, I had a very good experience at mass general hospital in Boston, along with Newton Wellesley hospital in Wellesley mass I had what's called ring surgery in Sept of 2021

 

[Geofd]

My surgeon was the one everyone wants, my cardiologist told me when he was starting out practicing this surgery in Italy, he put a replica of a heart in a bird house and practiced operation thru the small hole

 

[oztrek]

My surgeon was the one everyone wants, my cardiologist told me when he was starting out practicing this surgery in Italy, he put a replica of a heart in a bird house and practiced operation thru the small hole

Whats his name

 

[Geofd]

My cardiologist is Dr sheftel Newton Wellesley hospital
The surgeons name is dr.serguei meinitchouk mass general hospital in Boston. From beginning to end it was a very good experience

 

[dornole]

It kinda seems like Cleveland Clinic is the mitral valve Mecca from what I’ve read here, but I have no personal experience. I had my repair done here in Minnesota.

 

[oztrek]

I talked to a few surgeons, so far they proposed 3 different methods of surgery:
a) sternotomy (open breast bone 2 inch , one of them said 3 inch)
b) minimally invasive robotics (5 holes on the right side of the chest)
c) minimal lateral thoracotomy (3 inch cut under right nipple and a hole in groin)

Some of the doctors promised 99% chance of repair one of them said 95% .
Most of them said they have 99.5 % odds of not killing me during surgery

1) Is there a way to validate their stats?
On Sts database the stats are per hospital not per doctor

2) it seems like option a has 3 months healing time , b and c have 4-6 weeks, leaning toward b, anyone has experience with b or c?

I feel like each surgeon has his own preference and dont like other methods, two of them said robotics is risky and one of them even said Mass General shut down robotics dept.
One of them said only Cleveland Clinic is good in Robotics

3) Any good Robotics surgeon in NorthEast?

Other thing i am curious :
They all say I will be very tired during recovery so I cant spend 8 hrs before completing recovery time

4) I work on computers , no physical activity needed, anyone was able to work 8 hrs earlier than the expected recovery time?

Some of them say i need to the surgery in 3 months some say before the end of the year

5) Any tips appreciated

 

[pellicle]

Hi
strictly my opinion

I talked to a few surgeons, so far they proposed 3 different methods of surgery:
a) sternotomy (open breast bone 2 inch , one of them said 3 inch)
b) minimally invasive robotics (5 holes on the right side of the chest)
c) minimal lateral thoracotomy (3 inch cut under right nipple and a hole in groin)

Some of the doctors promised 99% chance of repair one of them said 95% .

oh gosh, you were one of the unlucky ones ...

1) Is there a way to validate their stats?

not really

I feel like each surgeon has his own preference and dont like other methods, two of them said robotics is risky and one of them even said Mass General shut down robotics dept.
One of them said only Cleveland Clinic is good in Robotics

welcome to the world of "medical opinion" and why I regularly dismiss any people here saying "always trust your doctor, not some random person on a forum", fact is the doctors often disagree more than we do.

Myself I have heard so many times that its all down to what a surgeon sees (with his or her actual eyes). Its not just all red goo and any experienced hunter who dresses his own animals knows just what they mean.

They all say I will be very tired during recovery so I cant spend 8 hrs before completing recovery time

well of course, you've just had major sugery

4) I work on computers , no physical activity needed, anyone was able to work 8 hrs earlier than the expected recovery time?

be real here ... recovery from General Anasthetic alone will make you wonky for weeks. What are you trying to do here trying to find a magic surgery that will have you back on deck in a week?

man, be grateful you're not going to die!

How about you list what your wishlist of expectations are so other recent surgery patients can chime in too?

 

[MdaPA]

Some of the doctors promised 99% chance of repair one of them said 95% .

The next question is how long do they estimate the repair to last? Also know your and your surgeons valve replacement preferences in the event your MV can't be repaired.

Does anyone know a surgeon in North East with lots of MV repair experience

Check out the below website to search for recommended heart valve surgeons. As you appear to be in New Jersey in the U.S. and want to stay local, you will find the University of Pennsylvania in Philadelphia, along with Columba and Mount Sinai Hospitals in NY to have the top recommended surgeons. If you want to travel a bit further and go to one of the best hospitals for heart valve surgery, check out Cleveland Clinic in Ohio as dornole also suggested.

Heart Valve Surgeon Finder for Patients & Caregivers

 

[MdaPA]

I talked to a few surgeons, so far they proposed 3 different methods of surgery:
a) sternotomy (open breast bone 2 inch , one of them said 3 inch)
b) minimally invasive robotics (5 holes on the right side of the chest)
c) minimal lateral thoracotomy (3 inch cut under right nipple and a hole in groin)

Any good Robotics surgeon in NorthEast?

I would suggest you choose the method they use to get in there based upon what the surgeon feels offers the best chances of success of the procedure.