Leaking Heart Valve anyone had treatment for it!

[Rosiemycat]

I have just come back from having an echocardiogram and was told I have a leaking heart valve that can be fixed, if someone has had this done could you please let me know how it is done

[10gingercats]

which valve?

[Rosiemycat in reply to 10gingercats]

Sorry don’t know but I’m seeing a Doctor in the Cardiac Clinic on Monday so will post then, thank you for answering

[Rosiemycat in reply to 10gingercats]

I saw Cardiac Doctor it’s mitral valve and another but not serious leaks, she is arranging a myocardial perfusion scan shortly

[Jocastina]

I think this depends very much on which valve and what needs to be done - a repair or a replacement. Some issues can be fixed with minimal procedures, others need a bigger operation, but generally that wouldn't be done until the leak is very symptomatic. I've had a leaky valve all my life but it only needed surgery recently, age 51. Some issues might never need surgery. So I would speak to your cardiologist to get advice specific to you. Sorry that's not very helpful!

[Rosiemycat in reply to Jocastina]

Thank you for replying I have an appointment at a Cardiac Clinic this coming Monday when hopefully I will know more which valve and what they plan to do, will post then

[Rosiemycat in reply to Jocastina]

Cardiac Doctor said 2 valves leaking mitral valve and another but not needing any treatment apparently but she is arranging a myocardial perfusion scan shortly

[Hidden]

Yes I had two Replacement Valves last year OHS Bypass (Aortic and Mitral)! That might not be the case with you though and what stage it is at. You need all the information from your Cardiologist and what they plan to do. They are the Experts! Best of Luck 😊

[Rosiemycat in reply to Hidden]

Thank you, I’m seeing a Cardiologist on Monday coming so will know more then and will post on here again

[Hidden in reply to Rosiemycat]

Oh that's good then! Take Care 😀

[Rosiemycat in reply to Hidden]

Cardiac Doctor is arranging a myocardial perfusion scan and said 2 valves leaking one the mitral valve but apparently not needing treatment or checking in future

[G1880]

I had my Aortic Valve repaired last month. My valve was bicuspid and has been repaired to make it tricuspid and there is no longer any leak at all.

Pre-surgery the leak was determined as ‘Severe’ but I did not have any symptoms. It was the dilation of the aortic root which had steadily increased over several years of surveillance that made the decision to intervene.

The procedure I had was a Valve Sparing Root Replacement with Aortic Valve Leaflet Repair. This has allowed me to avoid blood thinners and similar medication and provides a long term repair.

In medical terms I’m described as young (40) and the alternative option was a mechanical valve which I did not really want.

[Rosiemycat in reply to G1880]

Thank you for your answer, I have been having slowly worsening breathlessness which was diagnosed as asthma but I was concerned after having a heart attack in 2017 but just felt this wasn’t just asthma and my GP arranged for this echocardiogram and I have to see a Cardiac Clinic Doctor on Monday and I will write on here then when I know more how serious and what they plan to do

[Rosiemycat in reply to G1880]

I am being sent for a cardiac perfusion scan although 2 heart valves leaking one the mitral valve but not severe enough for treatment apparently, she said if that’s clear I haven’t got a heart problem causing the breathlessness

[Brolly12]

Hi, I recently had a leaky mitral valve repaired through open heart surgery . All very straight forward and I’m fine. The worst part was the worry before !! I’m happy to answer any questions or help in any way if it’s the mitral valve . They can repair valves in different hospitals with non invasive surgery so ask in ur appointment if that would b an option - best wishes x

[Rosiemycat in reply to Brolly12]

Thank you, I will know more from the Cardiac Clinic on Monday what they plan to do and would then be very grateful for your help

[21Scot in reply to Brolly12]

Hi Interested in minimal invasive treatment for leaking mitral valve. I’m hoping no surgery needed as I’m not breathless and seem to have no symptoms. It was picked up on echo after occasional AF. How common is any alternative to OH surgery and where ? I’m in NE Scotland . Any info gratefully received .

[Brolly12 in reply to 21Scot]

Hi, From my limited knowledge I know they perform non invasive surgery in Liverpool Heart and Chest Hospital and in London. My surgeon did say it can sometimes be more painful as there are more nerve endings where they cut you open. My mitral leak was a bit complicated so carried more risks with minimally invasive surgery. So I opted for open heart surgery in the end . I didn’t really have many symptoms with the leak either. There are so many options now with modern science. What I would say is dont be afraid of open heart as it’s really not that bad !!! The worst part is the worrying before ! Best wishes let us know how you get on 😁

[21Scot in reply to Brolly12]

Many thanks for your reassuring reply. Way things are with NHS and shortage of ICU beds it could be a long and anxious wait.

[Brolly12 in reply to 21Scot]

Waiting is so hard. But just think it will all be over , some point soon. Things appear to be improving with covid and less people are being admitted. I’m a firm believer that things are meant to be - at the right time for you . Best wishes, be strong and positive 👍🏼

[spikynana in reply to 21Scot]

Hi , I had a minimally invasive mitral valve repair last June at Liverpool heart and chest hospital performed by the brilliant Mr Paul Modi. I was born with Barlow’s disease apparently and had my first symptoms in January 2020, at the age of 62. They at first thought it was moderate, but after a stress echo it was found to be severe. It was painful , but totally worth it and I just have a small scar about 5cm long, not visible under my bra. I’ll happily answer any questions you have. The BHF helpline is wonderful and there is also a Facebook group. Hope this helps x

[Antique50 in reply to spikynana]

Hi - Glad to hear everything went well for you. I’m waiting for a minimally invasive mitral valve repair and was told it would be 8 to 12 months. Do you mind me asking how long you had to wait for yours? Kind regards from Antique50

[spikynana in reply to Antique50]

Hi I was found to have a severely leaking valve in February 21 and had my operation in June. I was very breathless and symptomatic too. However, in the end mine was a cancellation. I had a phone call from my surgeon at 1.30pm on the 9th June, was admitted at 6pm and had my operation on the 10th; not much time to panic 😱

[Antique50 in reply to spikynana]

Thanks for your reply. That was probably the ideal way to have the op. Glad it went well for you. My severe regurgitation was diagnosed over a year ago. The surgeon is ringing on Monday so I hope it won’t be much longer. 😊

[spikynana in reply to Antique50]

I really hope not. Where are you having your operation? It’s not an easy experience but so very worth it. I feel so much better and it really did save my life. I had Barlow’s disease which I was born with. It wasn’t found until I was 62 and had a really high irregular heart rate while out with my walking group and was blue lighted to hospital. Until then I had absolutely no idea there was anything wrong. X

[Antique50 in reply to spikynana]

Hi - sorry about delay in replying. I am having telephone appointment on Monday 5th with Mr Bahraimi at Harefield hospital so hope things go faster after that. I looked up Barlow’s disease and can see why you had yours done so quickly. I did see your consultant but I would have had to pay for op. if I wanted it sooner. Hope you are now OK. Best regards😊

[spikynana in reply to Antique50]

The very best of luck with everything xxx

[BlueBearBob in reply to Antique50]

I saw my cardiologist 3 weeks ago (after being diagnosed with Severe Mitral Regurgitation 3 months ago.) He decided to send me to St Barts for minimally invasive mitral valve repair or replacement. He said it would be a one to two month wait. Not heard anything yet.

Bob

[Antique50 in reply to BlueBearBob]

Hello BlueBear - are you waiting for an appointment? Do you have the name of the cardiologist ? I know how worrying waiting is and would ring the cardiac secretaries to see if you have an appointment in the pipeline. Hope this helps !

[BlueBearBob in reply to Antique50]

I do now have an appointment. Well several in fact. By the end of the month I will have had an angiogram and carotid scan at Ipswich Hospital. I also have an appointment with the surgeon at St Barts (by telephone.)

[Brolly12]

Always happy to talk x

[Rosiemycat in reply to Brolly12]

I saw Cardiac Doctor who said I had a heart leakage from 2 valves the mitral and another but only slight and not needing follow up or treatment but I asked what is causing the breathlessness and she said must be a lung problem so I said no as I had a CT scan on my lungs recently so she is arranging for me to have a myocardial perfusion scan but I have no idea when and said if that’s clear it’s not my heart, somehow I don’t feel reassured as the technician who did the echocardiogram said you have a heart leak but it can be fixed and it is probably causing your breathlessness when I mentioned to Cardiac Doctor she said he was a technician but I’m a doctor meaning her view obviously was more accurate

[Brolly12 in reply to Rosiemycat]

Hope you are well ? I’m sure the doctor would have a more in-depth understanding ? Let us know how you get on with your perfusion scan, it may give you a few more answers . Take care

[Rosiemycat in reply to Brolly12]

Hi

I had the cardiac perfusion scan and it showed heart was fine and the Cardiac Doctor that arranged the scan said that if it was fine that my problems are not caused by my heart. The breathlessness I’m experiencing is apparently caused by the Bronchectasis in my lungs that can cause Bronchospasm which is another word basically for a form of asthma but I don’t get a sudden tightening and difficulty breathing I have a breathlessness that is noticeable most of the time but I do have steroid inhaler and Salbutamol which does help. The leaking heart valves that I first wrote on here about have just been dismissed by the Cardiac Doctor as nothing to worry about.

Thank you for asking how I got on and I do hope you are continuing to keep well.

Take care

[Brolly12 in reply to Rosiemycat]

That’s amazing news ! I’m so pleased for you. Yes I am well thank you 😁