Pretty far OT medical question, but I trust experiences from board members

[psu_1989]

While I know this is not a normal topic for this board, I also find that BWI members are from a very diverse set of backgrounds and have often gone through many varied life experiences. I would love to hear if anyone has been through this, and would just appreciate hearing people’s points of view.

By way of background, I am a very fit, active 50 year old. Great wife and son, and overall happy environment. I have known for the past 15+ years that I have a “leaky” mitral valve, also known as Mitral Valve Regurgitation. I have been seeing a cardiologist for those 15 years, as well as annual physicals, etc. MVR entails two risks. 1 – The regurgitation (backwards flow) can cause shortness of breath, swelling of the ankles, abnormal heart rate, and/or fatigue. 2 – Enlargement of the left atrium, which over time will cause structural damage to the heart. For simplicity sake, I will say that the profile ratings are 1 (no cause for concern) – 10 (severe regurgitation and enlarged LA).

Agreed upon medical strategy by nearly all doctors: Ratings 1-5: – don’t do anything, continue to see cardiologist annually. 5 – 8: window for surgery to fix the valve, ideally a moment before damage to heart. 9-10:– operate immediately.

My situation is that I do not have any symptoms associated with risk #1 – I feel great and am not limited in anything I do. However, the regurgitation and notable the enlargement of my left atrium has progressed to a level that I am having varying recommendations from doctors. The doctors in my city are very good (top 20 city, all 4 sports team, most cranes of any city in US – showing the amount of capital moving here, best orthopedics in the country) but they are not associated with the Cleveland Clinic, Mayo, Cedars Sinai, etc. So here is the situation.

1) Cardiologist (not a surgeon) who I have seen for 15 years and trust deeply is saying: I am now about a 5-6. Said I do not need my valve repaired immediately but recommends getting it done by year end.

2) Cardiothoracic surgeon (top heart surgeon in our city by far, likely top 100 in US): Says I am closer to 6-7. Is less concerned about being asymptomatic from the MVR, and more concerned about structural damage if heart gets bigger before my next echo (i.e. worried I get to an 8 faster than expected). Operate now to be safe. Healthy, good prognosis for recovery and best long term outlook.

3) Interpretations of my Echo and Cath by the Cleveland Clinic (top 1 or 2 heart hospital in the country). I did not go there, just sent disks. Believe I am a 4-5. Will definitely need surgery at some point, but not sure if 1, 2, 3 years. Recommendation is to continue to monitor.

4) A very close friend who is a cardiologist who I also trust deeply: Believes I am 5, maybe a 6. Just on the brink of needing surgery, but while not specifically recommending it also thinks it is “not a bad idea” if I get it done in the near term, but waiting should not worry me either.

Heart surgery is clearly scary, but it is mitral valve repair (and this would be minimally invasive so not breaking the ribs) is now a very common surgery. 3-5 days in hospital, back to normal life in 1-2 weeks. Full recovery is 4-6 weeks and is really dependent on the chest muscles recovering not the heart. Now is a perfect time as it is before school is out, I sold my business and am not working. My wife supports either decision (yes/wait), but knows that this surgery has been a grey cloud hanging over my heard for 2-3 years when I moved from the “3” to approaching “5” categories in 2015-2017.

I am curious if anyone has faced this conundrum, or knows someone who has. I am really stuck in the middle. I know I would regret if I waited and my heart did become enlarged, but on the other side – it is somewhat voluntary heart surgery which who would every do that. There is a school of thought that early surgery is becoming more prevalent to prevent structural damage, though there is no control group to provide conclusive evidence either way. Would appreciate any thoughts or shared experiences.

 

[GregPSU]

While I know this is not a normal topic for this board, I also find that BWI members are from a very diverse set of backgrounds and have often gone through many varied life experiences. I would love to hear if anyone has been through this, and would just appreciate hearing people’s points of view.

By way of background, I am a very fit, active 50 year old. Great wife and son, and overall happy environment. I have known for the past 15+ years that I have a “leaky” mitral valve, also known as Mitral Valve Regurgitation. I have been seeing a cardiologist for those 15 years, as well as annual physicals, etc. MVR entails two risks. 1 – The regurgitation (backwards flow) can cause shortness of breath, swelling of the ankles, abnormal heart rate, and/or fatigue. 2 – Enlargement of the left atrium, which over time will cause structural damage to the heart. For simplicity sake, I will say that the profile ratings are 1 (no cause for concern) – 10 (severe regurgitation and enlarged LA).

Agreed upon medical strategy by nearly all doctors: Ratings 1-5: – don’t do anything, continue to see cardiologist annually. 5 – 8: window for surgery to fix the valve, ideally a moment before damage to heart. 9-10:– operate immediately.

My situation is that I do not have any symptoms associated with risk #1 – I feel great and am not limited in anything I do. However, the regurgitation and notable the enlargement of my left atrium has progressed to a level that I am having varying recommendations from doctors. The doctors in my city are very good (top 20 city, all 4 sports team, most cranes of any city in US – showing the amount of capital moving here, best orthopedics in the country) but they are not associated with the Cleveland Clinic, Mayo, Cedars Sinai, etc. So here is the situation.

1) Cardiologist (not a surgeon) who I have seen for 15 years and trust deeply is saying: I am now about a 5-6. Said I do not need my valve repaired immediately but recommends getting it done by year end.

2) Cardiothoracic surgeon (top heart surgeon in our city by far, likely top 100 in US): Says I am closer to 6-7. Is less concerned about being asymptomatic from the MVR, and more concerned about structural damage if heart gets bigger before my next echo (i.e. worried I get to an 8 faster than expected). Operate now to be safe. Healthy, good prognosis for recovery and best long term outlook.

3) Interpretations of my Echo and Cath by the Cleveland Clinic (top 1 or 2 heart hospital in the country). I did not go there, just sent disks. Believe I am a 4-5. Will definitely need surgery at some point, but not sure if 1, 2, 3 years. Recommendation is to continue to monitor.

4) A very close friend who is a cardiologist who I also trust deeply: Believes I am 5, maybe a 6. Just on the brink of needing surgery, but while not specifically recommending it also thinks it is “not a bad idea” if I get it done in the near term, but waiting should not worry me either.

Heart surgery is clearly scary, but it is mitral valve repair (and this would be minimally invasive so not breaking the ribs) is now a very common surgery. 3-5 days in hospital, back to normal life in 1-2 weeks. Full recovery is 4-6 weeks and is really dependent on the chest muscles recovering not the heart. Now is a perfect time as it is before school is out, I sold my business and am not working. My wife supports either decision (yes/wait), but knows that this surgery has been a grey cloud hanging over my heard for 2-3 years when I moved from the “3” to approaching “5” categories in 2015-2017.

I am curious if anyone has faced this conundrum, or knows someone who has. I am really stuck in the middle. I know I would regret if I waited and my heart did become enlarged, but on the other side – it is somewhat voluntary heart surgery which who would every do that. There is a school of thought that early surgery is becoming more prevalent to prevent structural damage, though there is no control group to provide conclusive evidence either way. Would appreciate any thoughts or shared experiences.

I've had mine for 15 years now and recently had a passed out in the woods problem resulting in a comprehensive evaluation of my heart. All the tests revealed an early heartbeat rythm problem as the culprit but doctors said leaking mitrol is still no surgery situation. On the other hand my son had his mitral replaced at the Clev Clinic a few years ago and is doing fine.

 

[91Joe95]

Amputate.

 

[AvgUser]

Long story short (sort of after i read what i typed )

I faced a similar situation with my Aortic valve 11 years ago. Active and fit, no signs of diddly. By chance I was at the Doctor for a cold/flu like cough and nurse listened to heart,. Gave me a prescription to get an echo. I almost threw it out. Three months later for some reason I decided to go have it done. That led to a cardiologist visit. I had some other test and a follow-up appt with cardiologist 6 weeks later. Three weeks prior to return appt, I get a call at 8 AM one Wednesday morning from receptionist informing me that Dr Sharma would like to speak to me now (uh-oh, not a good start to the day). He tells me I have a leaky valve and will likely need surgery within two years. I start thinking like you...later, now, What to do?

Cardio refers me to UPenn and their chief surgeon. He reviews results of a "TEE" test. He tells me there are three things he looks for: Valve size when expanding, valve size when contracting and leakage rate. If you trip any of the three, he recommends surgery. Two days later I get a call from him. He informs me that i trip all three triggers. He advises me that I should immediately schedule a valve replacement or else I will start doing irreparable damage.

Six' weeks later I had it done. Yes I was scared, but have come to know it's pretty routine. The surgeon did a great job. You can hardly notice my zipper.

All told, I was glad that the decision was more or less taken out of my hands. Had it not, I think I ultimately would have had it done sooner rather than later. I was forced in to immediate which did not bother me.

My advice? If you are healthy and it's a certainty you will need it, get it done sooner. Your body will be able to handle the trauma better the younger you are.

Good Luck

 

[LurkerLazarus]

Mitral valve repair is a relatively common procedure in this day and age. I don't wish to minimize the risks, but in 2018 this is a fairly well-understood and commonplace procedure. Assuming you have good doctors, and you are in otherwise good health, you'll do fine.

Find doctors you trust. Obviously, since you pose the question here, there is still doubt in your mind. You need to trust the folks who are giving you care. If, for some reason, you have doubt, then find someone else. You have to trust your docs.

The first line here is the cardiologist. When he decides to send you to a cardiac surgeon, that is when you go. Not before. A surgeon will always be more aggressive about surgery. You should go to the surgeon when your cardiologist tells you to go. Not before. A surgeon has the hammer, and you are the nail. Remember that. It's not good or bad. It's just the personalities involved.

 

[psu_1989]

Mitral valve repair is a relatively common procedure in this day and age. I don't wish to minimize the risks, but in 2018 this is a fairly well-understood and commonplace procedure. Assuming you have good doctors, and you are in otherwise good health, you'll do fine.

Find doctors you trust. Obviously, since you pose the question here, there is still doubt in your mind. You need to trust the folks who are giving you care. If, for some reason, you have doubt, then find someone else. You have to trust your docs.

The first line here is the cardiologist. When he decides to send you to a cardiac surgeon, that is when you go. Not before. A surgeon will always be more aggressive about surgery. You should go to the surgeon when your cardiologist tells you to go. Not before. A surgeon has the hammer, and you are the nail. Remember that. It's not good or bad. It's just the personalities involved.

Thanks. In fact a very much trust both my doctor and the local surgeon. The fact I got a different view from The Cleveland Clinic is the curveball here. All admit this is not black and white, so as many perspectives as possible help inform. Appreciate your thoughts.

 

[retsio]

Thanks. In fact a very much trust both my doctor and the local surgeon. The fact I got a different view from The Cleveland Clinic is the curveball here. All admit this is not black and white, so as many perspectives as possible help inform. Appreciate your thoughts.

I have to answer, and I hope you will not mind some background, current state and suggestions.

I never knew my Father had heart problems in the late '70's as he suffered with Angina, while the Dr.'s did not have angioplasty as a treatment at that time. He was a Principal at Abington for 24 years and an Educator for 40 years and waited for a heart operation until he retired in 1980. He died on Thanksgiving Day,1980 from a failed open heart procedure while I was at his bedside -- my Mother was afraid of the operation ....and never said he waited too long.

My 8year old Grandson died on April 4, 2007 from an undiagnosed heart disease call ARVD. He died in his sleep while the fatty tissue lining around the heart attacks the lower right quadrant until the heart cannot operate. All the stories about a child not outliving a parent are true -- his Mother and I are Penn State -- the family dynamic is never the same. With apologies to 'Outlander' -- "when one is gone, that which is grief can last forever". Thankfully my wife started the 'Go Red for Women' American Heart luncheons in SW Florida, raised almost $500K and now Florida newborns are tested for heart disease.

Now me -- in 1996 to 1999, I lived on cheesesteaks, Italian sandwiches, 2 and a half packs of cigarettes per day, no exercise, business stress and a cholesterol count of 296 while putting together the internet company www.yellowpages.com (now owned by AT&T). AND, I paid the price for it. My heart attack was on May 14, 1999 but I waited 3 days to see anyone. In 8 months time, I had 4 operations to place 2 stents (13mm and 18mm) in my RCA and to clean the clogged artery from plaque. Thankfully the Left Descending or widow maker was only 30% closed and could be treated with meds. We moved from Phila. to Naples, FL to get out of cold weather and I had made it for 17 years.....until.
Just days before Hurricane Irma, my 5th operation for another stent (20mm this time) came due as I could hardly walk around the golf course. That operation left me with so much angina that a 6th operation this last January 5 placed a 28 mm stent in the RCA and the PET scan a Left Descending behind the heart is closing. What the Doctors will do the next time is anyone's guess because the RCA is full of stents.
I will finish my next internet company, hand off 2 projects and write my book of essays....hopefully. I can now walk a mile per day and some upper body exercises, golf will come again.

I did not listen to my body and take care of myself. Then I waited for the inevitable, much too long until the decision had to be made, and now at 75 still enjoy every day. The business is frustrating but it is warm and sunny outside. What can I say.

If you wait, you are or will be a time bomb waiting to happen. All of my Dr.'s have said you must be in good shape to just get through a heart operation, and I was not. With angina -- do not fly, because when you exit the plane it will take you 20-30 minutes to recover and be able to continue. I have been treated by Thomas Jefferson -- Lankenau and Paoli hospitals and at the Vanderbilt University Med system, now finally at Naples hospital. Everyone else is right -- it is the doctor and especially the quality and capability of the surgeon. Tour that research facility and hold a heart in your hands to see what and how things happen, those stitches must be perfect. In the end, you will be better.

Suggestion -- do not wait, 'to live as long as we are allowed, because every sunrise and every sunset is a blessing.' Good luck.

 

[BTMurphy]

A brief reply: my mother in law had this procedure done and, despite a myriad of other health problems, survived quite nicely for the final 20 or so years of her life (passed due to unrelated issues). It really did seem to benefit her.

I’m fairly proactive by nature, and since the procedure seems inevitable, I’m likely to act sooner rather than later. It’s not the sort of thing you want to be late on. (That last sentance was my wife speaking- she’s the worrier of the two of us). Whatever you decide, good luck, God bless, and trust your instincts.

 

[PSU Soupy]

I've had mine for 15 years now and recently had a passed out in the woods problem resulting in a comprehensive evaluation of my heart. All the tests revealed an early heartbeat rythm problem as the culprit but doctors said leaking mitrol is still no surgery situation. On the other hand my son had his mitral replaced at the Clev Clinic a few years ago and is doing fine.

Greg were you hit shoulder to shoulder by anyone? We have learned that this can cause a concussion and perhaps to losing consciousness : )

 

[PSU95alum]

I have a bicuspid aortic valve (supposed to be tricuspid, but 2 cusps are fused together) and this creates some regurge. It was diagnosed when I was 18 and was told I'd probably have to replace it in my 40's or so. I'm now 45 and it still hasn't progressed much, yet. However, if I were told that I was on the verge of needing it replaced, I'd probably want to do it sooner rather than later. The feeling of my heart being a walking time bomb doesn't sit well with me. Good luck in your decision.

 

[Dixi]

Tough call. I'm 49 and thankfully have no personal patient history on this subject, but I have worked for a cardiology software / device company for 20 years and know that there's a ton of outcomes data available on this subject (the Society of Thoracic Surgeons has been collecting a standardized data set from hospitals going back to the 90s). I'd be inclined to trust your thoracic surgeon here above all others. Good luck.

 

[okinburg1]

No offense to your local docs, but Cleveland Clinic is, without question, one of the best hospitals in the country for cardiac surgery. I would place the most value with their recommendation, with this caveat - if you live close enough, go see them in consultation and let them lay eyes on you. That will allow them to "see the whole picture," putting you and your studies (echo and cath) together.

I would also offer this bit of advice. Yes, mitral valve repair is fairly commonplace, and many surgeons perform the procedure, but not all do it well. It is like most things in life - the more you do the better you get at it. Cleveland Clinic does a large volume of all types of cardiac surgery. A poorly repaired mitral valve can mean re-do surgery (to either re-repair or replace) and repeat cardiac surgery carries it's own significant risk.

I do not live or work in Cleveland; however, I do not live that far away. If I personally needed mitral valve surgery, I would very strongly consider paying my co-pay (20% out of pocket/network) to go to the Cleveland Clinic. There are several large hospital systems in my greater metropolitan area, all of which do cardiac surgery, and it would be something I would think long and hard about.

Yes, I am a physician and I care for cardiac surgical patients. There is no substitute for volume and experience in this situation.

My $0.02.

 

[ILLINOISLION]

Other than having my heart broken a few times over the years, I got nothing. Just wanted to wish you peace and comfort as you try to make this / these decision(s).

Go with your gut and don’t second-guess yourself through this process.

 

[psu_1989]

No offense to your local docs, but Cleveland Clinic is, without question, one of the best hospitals in the country for cardiac surgery. I would place the most value with their recommendation, with this caveat - if you live close enough, go see them in consultation and let them lay eyes on you. That will allow them to "see the whole picture," putting you and your studies (echo and cath) together.

I would also offer this bit of advice. Yes, mitral valve repair is fairly commonplace, and many surgeons perform the procedure, but not all do it well. It is like most things in life - the more you do the better you get at it. Cleveland Clinic does a large volume of all types of cardiac surgery. A poorly repaired mitral valve can mean re-do surgery (to either re-repair or replace) and repeat cardiac surgery carries it's own significant risk.

I do not live or work in Cleveland; however, I do not live that far away. If I personally needed mitral valve surgery, I would very strongly consider paying my co-pay (20% out of pocket/network) to go to the Cleveland Clinic. There are several large hospital systems in my greater metropolitan area, all of which do cardiac surgery, and it would be something I would think long and hard about.

Yes, I am a physician and I care for cardiac surgical patients. There is no substitute for volume and experience in this situation.

My $0.02.

Thanks. I am lucky that my surgeon does about 100 MVs a year, the vast majority repairs. He said he has stopped using Da Vinci as he did not like the results. I am also lucky that I know Dr. Mihaljevic's assistant at CC, who was my contact. My cardiologist has reached out multiple times to the Clinic and has not heard back. I am still trying to piece all of this together.

 

[lionville]

I would avoid Penn State Hershey, based on family experience with mitral valve surgery.

 

[dailybuck777]

PSU-1989

With great respect to Okinburg1.

From about 20-25 years ago, here are my two experiences with the Cleveland Clinic when I , as a lawyer, used to represent claimants in workers compensation cases. First, I had a client who had Scleroderma, which is an awful form of arthritis that not only attacks the joints but the internal organs. His local doctor in Mansfield Ohio diagnosed scleroderma. He went to the Cleveland Clinic , and they diagnosed him as having a mental problem. When my client's doctor heard of the Cleveland Clinic diagnosis, he stated that he didn't know how the Cleveland Clinic arrived at their diagnosis, all he knew was that Tom [not real name] had scleroderma. Later on, my client did develop full fledged case of Scleroderma which was obvious to everyone.

Secondly I had a client who was working in a poorly ventilated space with industrial solvents while painting. He developed facial paralysis. When he went to the Cleveland Clinic, they diagnosed a migraine headache.

These were the only two cases I ever had with the Cleveland Clinic because they normally didn't get involved in workers compensation. My take with the Cleveland Clinic is that they hired a fair amount of doctors with good academic qualifications that were not good at the practical practice of Medicine. Just one person's experience, which you can take or leave. Have never had any experience with their heart department, which is well known.

Having seen many back surgeries, I agree 100% that volume does lead to better results.