Newly Diagnosed with MVP with severe regurgitation

[Motion4663]

Hey there. I just wanted to introduce myself. 38 y.o. Male. Construction worker, San Francisco.

I have been physically active my whole life. Played sports as a child and teenager, got into construction, and enjoyed physically creating things and working with my hands. Outdoors on the weekends. Stayed in good shape, alot of cardio. Never used steroids or any other supplements aside from GNC protein powder.

I got sick in Sept. of 22 with the flu. I stopped exercising when sick, and waited until I felt healthy to resume. 4 weeks later I resumed running, but noticed I would get winded quickly and so stopped pushing myself. I shortened my workouts and figured I'd get it back with time.

About 10 months ago, I noticed I would get lightheaded when climbing tall ladders occasionally, but in the mornings only. I figured maybe I needed to cut back on the coffee, and would fill my moring thermos with 50% water to dilute my coffee. However these lightheaded/dizzy spells contiued sporadically.

I went to a physician, and after explaining the above, was given a blood panel, physical exam, and ekg. The results came back that I was in perfect health. 6 months later I returned to the same physican and explaned that the dizzy spells had become more frequent, multiple times a week. The same tests were repeated with the same result. At this point I was still working out and lifting weights, but not at the scale I had been previous to catching the flu.

A few weeks ago, I was sitting in my car taking morning break at work and felt very weak. Confused, dizzy and lightheaded. I called to make an appt with my physician. As I went to get out of my car, I fell back into the car seat. I felt pressure in my chest, and expelled a powerful cough. My heart was pounding and thudding in my head. I thought to myself 'here comes a heart attack' and called for an ambulance. At the hospital I was told that I was experiencing arrythmia, not heart attack or stroke.

I followed up with my physician, and was referred to a cardiologist. I was given a Holter Monitor to wear for 2 days, and a echocardiogram was scheduled for the following week. I felt especially ill the day of the echo, chest pains, weakness and fatigue. After the echo I was told I have MVP, and the cardiologist expressed suprise that I had not complained sooner. A Transesophageal echocardiogram was scheduled for a few days later, with a follow up 2 days after that to go over the results. After the TEE I was told its likely my mitral valve would need to be repaired or replaced. This personally does not suprise me; I have gone from climbing ladders and working physically 8 hours a day, to being strained taking out the trash or going to the grocery store. In 2 days I have the follow up with my cardiologist, in which they will discuss my diagnosis and possible courses of action.

I have found a great deal of useful information lurking on this site. In particular are the comparisons of MVP repair vs replace, Bio vs Mechanical, and possible courses of medication with each. From this point on, I am interested in educating myself so I am able to recieve the best care possible in the Bay Area. The big name hospitals I keep hearing about are Stanford and UCSF. My current Cardiologist is with Dignity Health. After some conversations I have also heard the name on the building is not as important as the experience of the surgeon performing the operation. If anyone has any recomendations for a PPO health plan with generous coverage in the Bay Area regarding MVP, please let me know.

Thank You.

 

[dornole]

Just wanted to say hi and I hope you find a good care team in your area. I had mitral stenosis that was repaired via a valvuloplasty in 2002. It gave me moderate to mod-severe regurgitation but great trade off in terms of functioning. Hope you get great results whatever route you go.

 

[Motion4663]

Thank you.

 

[dick0236]

Welcome to the forum. Open Heart Surgery (OHS) tends to "blow the mind" of most who have been told to have repair or replacement of a heart valve. It has become a relatively common procedure being done at many urban hospitals. I would imagine that a number of hospitals in the San Fran area have surgical teams capable of most heart procedures. Use this time before surgery to educate yourself about correcting your issue.

I vaguely remember my thoughts, when I was 31, and will tell you that few "what ifs" ever occurred in my post surgery life.

 

[pellicle]

Hi and welcome

In particular are the comparisons of MVP repair vs replace, Bio vs Mechanical, and possible courses of medication with each. From this point on, I am interested in educating myself so I am able to recieve the best care possible in the Bay Area.

that's a laudable goal before you go much further into this I recommend you take a quick listen to this video



To answer your question you'll find that there is a lack of good quality controlled trials on your question about repair and its very much down to the "feelings" of the surgeon. Some get good results, others don't. I believe its down to expert analysis on a case by case basis. You'll need to get an expert in repair because its a highly specialised area of what is already a specialisation.

Aside from that it comes down to bio vs mech which is well discussed here. Basically

• bio holds up a promise of not requiring ongoing ACT however there are facts that are overlooked like the possibility requiring ACT some time later (years usually) its possible you may require ACT
• bio also will not last as long at your age, you can expect up to 10 years before reoperation begins to loom
• mech brings with it concomitant ACT and the requirement to engage with that and manage it around inevitable issues which come up in the future. Aside from that issue (and assuming well managed ACT) you'll reasonably expect a lifetime from that valve

I would expect that you go back and forth between positions, and that's a good thing. You can't learn it all at once, so as Dick would say "eat the elephant one bite at a time"

Some additional views of mine here:

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
Don't miss this presentation within that


I've written a lot about INR management but lets get to that when you're ready.

Lastly I'd like to remind you that the success of the OHS is very good, and that soon you'll be past it and in 5 years wondering what it was all about.

Hit back with questions

Best Wishs

 

[dornole]

Are you thinking of changing insurance during open enrollment (maybe buying on the exchanges?) and having surgery in 2024? Trying to decide what employer-offered plan to pick right now (if applicable, not sure how big a company you work for, self-employed, or what). Hopefully someone here or your own research can help you identify a surgeon and then check their website to see if that specific person and the hospital they practice in is in-network. "Good coverage" being relative. Have you tried searching the forums for posters from your area and messaging them directly to ask about what insurance they have / specific surgeons?

FYI for those outside the US, we are only allowed to change insurance companies / plans during an open enrollment period of a couple of weeks, which happens to be right now, unless you have a qualifying event (marriage, birth, new job, unemployed and loss of coverage etc.) We can choose one of the plans our employer offers (often cost shared with employer and employee), buy on a public exchange, or qualify for a government plan based on age, disability or low income. Just a little context on what I think the OP is asking - wants to pick a PPO (preferred provider) plan that will give him good options with higher coverages if he chooses a surgeon in the plan's Preferred Provider network. Usually when choosing a plan you can search a database to see if your providers are in-network. Not starting a health care debate, just giving context.

 

[Motion4663]

Thank you for the replies!

Hi and welcome


that's a laudable goal before you go much further into this I recommend you take a quick listen to this video



To answer your question you'll find that there is a lack of good quality controlled trials on your question about repair and its very much down to the "feelings" of the surgeon. Some get good results, others don't. I believe its down to expert analysis on a case by case basis. You'll need to get an expert in repair because its a highly specialised area of what is already a specialisation.

Aside from that it comes down to bio vs mech which is well discussed here. Basically

• bio holds up a promise of not requiring ongoing ACT however there are facts that are overlooked like the possibility requiring ACT some time later (years usually) its possible you may require ACT
• bio also will not last as long at your age, you can expect up to 10 years before reoperation begins to loom
• mech brings with it concomitant ACT and the requirement to engage with that and manage it around inevitable issues which come up in the future. Aside from that issue (and assuming well managed ACT) you'll reasonably expect a lifetime from that valve

I would expect that you go back and forth between positions, and that's a good thing. You can't learn it all at once, so as Dick would say "eat the elephant one bite at a time"

Some additional views of mine here:

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
Don't miss this presentation within that


I've written a lot about INR management but lets get to that when you're ready.

Lastly I'd like to remind you that the success of the OHS is very good, and that soon you'll be past it and in 5 years wondering what it was all about.

Hit back with questions

Best Wishs

Thank you! That is a good bit of information for me to get started with.

Are you thinking of changing insurance during open enrollment (maybe buying on the exchanges?) and having surgery in 2024? Trying to decide what employer-offered plan to pick right now (if applicable, not sure how big a company you work for, self-employed, or what). Hopefully someone here or your own research can help you identify a surgeon and then check their website to see if that specific person and the hospital they practice in is in-network. "Good coverage" being relative. Have you tried searching the forums for posters from your area and messaging them directly to ask about what insurance they have / specific surgeons?

FYI for those outside the US, we are only allowed to change insurance companies / plans during an open enrollment period of a couple of weeks, which happens to be right now, unless you have a qualifying event (marriage, birth, new job, unemployed and loss of coverage etc.) We can choose one of the plans our employer offers (often cost shared with employer and employee), buy on a public exchange, or qualify for a government plan based on age, disability or low income. Just a little context on what I think the OP is asking - wants to pick a PPO (preferred provider) plan that will give him good options with higher coverages if he chooses a surgeon in the plan's Preferred Provider network. Usually when choosing a plan you can search a database to see if your providers are in-network. Not starting a health care debate, just giving context.

I am not changing insurance, I was hoping to get recommendations between either Dignity, UCSF, or Stanford. I think I need to do some digging on this forum as well as take your advice and search for experiences in my area. Thank you!

 

[V__]

I am not changing insurance, I was hoping to get recommendations between either Dignity, UCSF, or Stanford. I think I need to do some digging on this forum as well as take your advice and search for experiences in my area. Thank you!

Sounds good. Since you are already quite symptomatic, I'd think you are not in the position to wait too long.

I'm only second-hand familiar with Stanford, and not at all with Dignity and UCSF. (My surgery was at Kaiser.) One metric is the surgery volume for a given center. The more the better, and more likely they have a surgeon that specializes in mitral valve. Don't have the total numbers for these centers, but CA is a rare state that publishes the bypass (aka CABG) surgeries statistics. Since this type is the largest class of OHS (AFAIK about 40%), so its statistic is quite indicative of the total volume. From the most recent table, both Stanford and UCSF have similar decent numbers, with Stanford doing about 30% more. I don't know which hospitals are associated with Dignity, but you can check the table.

Both the repair and replacement should have quite good outcome. Statistically, repair is a bit better in terms of risk and longevity, and there is like 90+% chance of getting it. But, of course, it depends on the specifics. If I were you, I'd ask the surgeon about these odds in your case. As well as how often the surgeon does this specific surgeries, how many they did, what success rate was.

There will be a few preparation steps down the line. At some point I compiled my experience, and pointed to the thread with a lot more discussions. Maybe that's helpful.

 

[Zoltania]

My mitral valve repair was at Kaiser in Santa Clara. My understanding is that, for mitral valve regurgitation (but not stenosis), repair is usually possible and is preferred over replacement.

If you search the archives, you can find names of surgeons at Stanford, though I don't know if there are recommendations for the other Bay Area health systems. As @pellicle mentioned in another thread, heart valve surgery is now fairly routine, so you shouldn't need to seek out the best surgeon in the country unless your case is highly unusual. My Kaiser surgeon did a fine job as far as I can tell, and my recovery was uncomplicated.

 

[pellicle]

My Kaiser surgeon did a fine job as far as I can tell, and my recovery was uncomplicated.

just for my own education, is Kaiser the name of the insurance company? I've heard that in discussions with Chuck and perhaps I've misunderstood.

 

[dornole]

I did get a mitral stenosis repair - not only that, it was non surgical using a balloon thru a leg vein. I think it’s pretty standard for pure mitral stenosis. It’s a bit of a brute force tactic so expected to worsen regurgitation by a degree which is what happened to me. It’s not good if there’s a mix of stenosis and regurgitation such that making the regurgitation worse would be really bad. Just for the record here.

 

[V__]

just for my own education, is Kaiser the name of the insurance company? I've heard that in discussions with Chuck and perhaps I've misunderstood.

It's "vertically integrated" entity, that's both the insurance and the provider. Or at least this is how it looks like from the patient's side. I'm sure internally they have different departments. But as a patient it can be nice to only deal with 1 party instead of 2.

Locally it does have a reputation of being sort of "commodity provider". But the local cardiac centers are quite good IMO, and handle large volume of surgeries.

 

[pellicle]

It's "vertically integrated" entity, that's both the insurance and the provider..

interesting that explains my problems in what appeared to be a mixed view.

 

[Zoltania]

Kaiser is officially an HMO, which means that you can only see doctors within their system except under unusual circumstances. Their doctors all work in their medical offices, which are often physically co-located with their hospitals. It's a very convenient and integrated system. It is so large that there are many doctors available.

To see a specialist you need a referral from your primary care physician, but I have never had an issue with that. Whatever tests, treatments, physical therapy, etc., that I've needed have always been readily available to me.

In contrast, I know someone with "regular" insurance who has a torn rotator cuff. Her doctor said she needed surgery, but her insurance company denied that until she goes through six weeks of physical therapy which is painful and not doing any good. I'm grateful for the Kaiser system.

 

[Gail in Ca]

I have known friends over the years that chose Kaiser. Some are very happy with it, others, like my neighbor, are dead. So, I have only had Kaiser when I worked as a pharmacy tech there and we also had my husbands plan which was a ppo.
My neighbor had months of symptoms and with each doctor visit they didn’t seem to have answers. On a Thursday he went to a cardiologist who said he was fine and could go back to work on Monday. His wife began to cry because she knew he wasn’t fine. That cardiologist told her to stop crying!
He collapsed on Saturday, was rushed to Kaiser ER, where he was for hours. He died there in the ER. He apparently had an aneurysm which they never tested for. It makes me tear up just thinking about this. I pay for a good ppo plan and thankfully I can afford this.

 

[V__]

I have known friends over the years that chose Kaiser. Some are very happy with it, others, like my neighbor, are dead.

Thanks for sharing the story. My interpretation is that the doctor's quality varies everywhere, and your neighbor had a really bad luck with that particular doctor.

One could try to contrast the performance of the different systems overall, but would need "real statistics" for it. I'm always concerned about drawing conclusions on the basis of unusual events ("outliers"). Or worse, comparing unusual/rare things with typical ones.

I had experience with non-Kaiser providers as well (the latest with PAMF), and saw a varying doctor's quality. The worst cardiologist I ever saw was with PAMF. Fortunately at that time it was not critical, and his non-examination was not harmful.

FWIW, in my view overall Kaiser performance is similar to the other providers and it's very good (*). Except... they have the largest cardiac surgery volume in the Bay Area, by far. For me, it's an important aspect, so I'd rather stay with them, just in case if there is ever the need for another surgery.


(*) My suspicion/impression is that this also varies by location. For some reason, all 4 PCPs I had locally were really excellent. Or maybe I learned to choose them better Who knows (precisely).

 

[Gail in Ca]

Interestingly, when I was 34 and having symptoms of weakness in my upper legs, I went to 5 different doctors in the Bay Area. The last one I went to said if he couldn’t reproduce my symptoms in his office, I obviously didn’t have a serious problem.
My friend recommended her family practice doctor at PAMF. I had never been to there so I made an appointment. She gave me a full exam and wanted an echocardiogram. I was thinking, hmmm?
I did the echo at the local hospital and the results came back with nothing. This new doctor then sent me and the tape of my echo to a cardiologist w PAMF in Palo Alto. He looked at the tape, called me at home and I went back in. He saw an aneurysm of operable size and leaky aortic valve and mitral valve. Basically, that PAMF doctor saved my life!!
I know there are not so great doctors everywhere, but my experience with many years at PAMF were excellent. It was my PAMF cardiologist that recommended the doc I see here in LA. He has now recommended a robotic Cardiothoracic surgeon and an interventional cardiologist which I just saw. I was impressed with both (Cedar-Sinai). I’m just glad I can go to any doctor, not just the ones in a HMO.

 

[V__]

Interestingly, when I was 34 and having symptoms of weakness in my upper legs,

He saw an aneurysm of operable size and leaky aortic valve and mitral valve. Basically, that PAMF doctor saved my life!!

What a story! Really glad you had the correct diagnosis and that you are with us now!

As an aside, I didn't know that weakness in the upper legs could be a symptom of heart troubles. I know that things like the jaw pain, left arm numbness, back pain, stomach pain, heartburn, feed edema, lightheadedness could all be symptoms of various heart-related conditions. But this one is new to me.

I know there are not so great doctors everywhere, but my experience with many years at PAMF were excellent.

Glad you did. My point is that it's hard to evaluate the different systems with personal stories though. You clearly have a bit better experience with PAMF than I do, and a lot better opinion about Stanford than I do. But it's all based a relatively limited experience. For example, I likely saw less than 1% of all PAMF doctors. Should I project my experience with a single visit with a single doctor to their entire organization? Does it mean that I will ever have a bad experience with them if I were to keep them as my provider?

I’m just glad I can go to any doctor, not just the ones in a HMO.

This option looks unusual. It's good that you have it and that you are happy about it

 

[Gail in Ca]

My surgeon said the same about the weakness in my legs. He said that would’ve told him nothing, but it’s what got me in. I had this weird weakness starting after the birth of my baby. When I picked her up from the crib I often had to lean against it until the weakness subsided. This also happened with groceries. I would lean against the car.
So for 1 1/2 years I went to different doctors knowing something wasn’t right. Finally, the doc at pamf heard a murmur.
That’s what started everything

 

[Gail in Ca]

I disagree. The personal stories of these friends I knew who had Kaiser and are now no longer with us told me a lot.
Besides my neighbor, my friends husband fell over and died on a bike ride. His clogged arteries were missed by Kaiser. Another trumpet playing friend had a stent put in. He had done a 40 mile bike ride the day before. Something went wrong w the stent and he also died at Kaiser ER. My conductor found out he had multiple myeloma from a blood test to get more life insurance. He never knew this from going to Kaiser. He died in just a few months. And these are just in a small circle of friends.
Anyway, I know my friends that have Kaiser and love it would never switch.
Just different opinions and many have not had the issues with their health like I’ve had.