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Failed mitral valve repair, inoperable? Can anyone help?
I don’t know if anyone can help me now. I have reached out to 3 surgeons in Ontario, Canada. I’m living in Nova Scotia. I had a mitral valve repair for regurgitation back in 2012. A mitral T band and 12 chordea were inserted. I was great for the past 15 years…lived a very healthy life. I am very physically active and fit. 69 years old. I suffered a pulmonary embolism in January 2026 while in France on a ski trip. I landed in a French hospital in heart failure with pulmonary edema. I ended up learning that I have severe mitral valve stenosis and I am in persistent a fib since the pE. My new cardiologist in Nova Scotia will not refer me to a surgeon. I contacted 3 myself including my original, Dr. Tirone David at Peter Munk Cardiac centre, Toronto General Hospital… now 82, retiring, world famous. After reviewing my transesophageal echo from March 2026 Dr. David told me the posterior leaflet is scarred down leaving inadequate tissue to repair the valve. The anterior leaflet is thickened. I also have a moderately dilated L atrium. And now the mitral valve has mild leakage too. The cardiology team here in Halifax says surgery for a valve replacement is too dangerous and may make things worse. They tell me I need to be in heart failure and breathless at rest before the benefits outweigh the risks of Valve replacement with a pig valve. However, this means there will be more damage to the r and l atrium and ventricles and probably irreversible pulmonary hypertension. The valve went from 3.5 cm 2 to 1.6 cm2 ( severe stenosis is 1.0. - 1.5 ). I am trying to get a Catheter ablation but it probably won’t hold because of the valve pressure and there is a one year wait here. A cardioversion in March returned me to N sinus rhythm for only 3 days. I’ve now been told not to proceed with a valve replacement by 3 surgeons and to wait till I go into ventricular dysfunction. I’m continuing to exercise … long distance cycle but now with a Ebike, play tennis but now doubles, walk daily 5 km and do Pilates. My heart rate goes too high during these activities 100-160. I’m on metoprolol and apixaban/ anticoagulant. The surgeon here just wants to control rate using these drugs. Until recently I thought I could get a new lease on life with a valve repair or replacement but surgeons are saying it’s too risky. I expect the risk will increase if the stenosis worsens and i know it will. It only took two years to go from mild stenosis to borderline severe. I’m going to die in heart failure or maybe on the surgical table ….. things now seem hopeless. Does anyone know of a highly experienced surgeon in Ontario at a high volume heart centre like Ottawa Heart institute or University Health Network in Toronto that does complex repairs and would do a consultation with me? It appears that a new pig valve may only give me a survival rate of 50-65% for 5 years and 20% for ten years. I’m told I will need another third surgery when the pig valve fails at 5-10 years and that is even riskier so that is why they are leaving me. The cardiologist also calls me asymptomatic currently, because I am just breathless upon exertion and climbing 1-2 flights of stairs or walking up a slope. Scared and feeling like there is no fix now. No physiotherapist wants to advise me re exercise either. I’m reaching out to a cardiac rehab program and hopefully I can make the adjustment and remain active and socially connected. Anyone have advice? I don’t think I could afford to go to the Mayo Clinic or Cleveland Clinic for surgery unless I sold my home. The funny thing is I look so healthy yet the clock is ticking I just retired and was planning on travelling and enjoying life. I’ve spent the past four months studying my heart disease and trying to make an action plan. But all doors are closing.
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Could you contact Mayo Clinic Cardiology to see if any research studies are being done on this type of problem?
That might solve the affordability issue if you volunteered and were accepted as a subject.
Also, Mayo or Cleveland Clinic might be willing to work with you on financial arrangements if you explain your situation.
Please let us know how you do.
Hello from BC.
Six weeks ago, I had my bicuspid aortic valve replaced with a bio-valve. I am now well versed in the hearts function before, during and after OHS.
My advise to you is to stop pushing your heart to reach 100-160 BPM! Your heart is already compromised severely. You are causing your defective heart to overwork. Geez Louise...Take a break. I'm 75 so if my Bio-valve lasts 10-15yrs. I'd be happy with that. Best of luck to you.
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2 ReactionsI have read on other boards that the Cleveland Clinic will review someone’s records and provide a second opinion remotely. It appears to be an out of pocket expense but considered well worth it to tap into their expertise. Sorry I don’t have specifics on cost or process but it might be worth looking into.
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2 ReactionsTo our OP, I agree with justwannasay: time to be conservative....as in...conserve whatchastillgot. Your valve is already damaged, and running into nosebleed territory when exercising/being active, by your own admission, is just wearing the damaged/deteriorating tissues that much faster. Your valve has a limited number of actuations left, and you're using them up rapidly when your HR rises above 140 BPM....twice as fast as when at rest and when you're more comfortable and less anxious.
It seems to me those three surgeons agree amongst each other, so I don't know what you expect to see or hear from a fourth/fifth/sixth/seventh...? An ethical and responsibly, experienced, surgeon will take one look at your most recent workups and know that you are not a good candidate for the repair....not yet. Their first promise is to, '...Do no harm.' To take on your case, on a hope, would be counterproductive at this time. In a year, maybe not, and you and they have nothing to lose by attempting yet another repair/replacement. Right now, you're in about as good a place as anyone can hope in view of your long cardiac history. Find out how to enjoy the comfort you have when sedentary, and hope for the best.
The Ottawa cardiac unit is world class. If you can find someone to read your file and to make a fourth recommendation, maybe that one will click for you. https://www.ottawaheart.ca/patients-and-visitors/clinical-departments/cardiac-surgery
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1 Reaction@gloaming
Thank you for your response. I have been in contact with Dr Vincent Chan in Ottawa. I am hoping to have catheter ablation there in the future and possibly a stress echo. Still gathering data and things keep changing. Will also be getting a second opinion through the Cleveland Clinic . My understanding is that they will review my medical history and imaging and provide a comprehensive report regarding next steps. My understanding from my research is that waiting for severe symptoms can lead to irreversible damage and that the risk of even more complex surgery increases if the valve is not replaced now. I read the early surgery improves long term outcomes. The presence of new a fib plus a failed repair seem to be indicators for immediate replacement yet I am being told wait until I am in heart failure to replace the valve. Maybe it’s conservation of resources or lack of skill in an underfunded provincial system? Maybe it’s hesitancy to do a replacement when one may require future surgery and another replacement in 5-10 years. But I’m rather confused currently regarding watchful waiting or move forward. I feel I need to get a plan even if surgery will be required later given lengthy wait lists and perhaps inability to navigate the system when more compromised. I am seeking physiotherapist input regarding modifying my current activities but this lifestyle has been embraced for 40 years and it’s really hard to substitute passive activities for very active ones but I am trying hard to implement necessary changes. Thank you again.
@kudzu that’s a good idea and I’m going to follow up with it. Thank you
@jefftalley I have a benefit from work called Carepath that accesses the Cleveland Clinic and has offered me a second opinion . So we should have all the images and records soon to go for it. I am very interested in hearing from them as I know they are a top rated centre for heart surgery. Thank you!
@justwannasay
10-15 years of good quality life would be great. I’m grateful for having 15 years after the mitral valve repair that I thought would be good forever at the time. In persistent a fib it’s at 100 without much effort a TV all line just climbing stairs at home. But it can also be down to 50 when sleeping. Still figuring it all out and I’m sure I will over time. I really just want to know when is the best time for surgery to preserve what’s still working and prevent further deterioration. I guess slowing down would help. Gardening more than tennis. Etc. Using all the assist on the Ebike instead of my usual sprinting and leading the pack. Hard adjustments for me but I’ll get there. Thanks
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2 Reactions@kudzu
Good plan and I will follow up on the Mayo clinic idea. Thank you
Could you possibly travel to the Cleveland Clinic for a consultation? They are very helpful when calling their 800 number and will put you in touch with a person who guides you through the process of having your medical records sent and setting up an appointment. An opinion from that institution would be very meaningful in that they routinely take on difficult cases and are even frequently willing to operate on the very ill and elderly.
I wonder if the socialized medicine in Canada plays a role in decision-making regarding approving surgeries. I know that your wait times can be long and painful.
Although I have no way of knowing for sure, it seems odd to me that they will not replace your valve, especially in a person of your age and activity level. I wouldn’t take no for an answer. But if the Cleveland Clinic concurs that your valve replacement is a no-go, then you can rest assured that your three opinions from your home base are valid.
Also, ask about the cost and any financial assistance available. Cleveland is known to charge less than other hospitals.
I had a mitral valve repair at Cleveland 19 years ago- minimally invasive with only a few inches of my sternum cut.
They told me that I l would have had replacement had my valve been in worse shape. I had leakage from leaflets that didn’t close tightly enough. There was no question regarding not being a candidate. I was there because waiting would have led to heart failure eventually which was unthinkable.
Good luck to you. Having to be your own advocate is challenging but worth it!
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