mitral valve regurgitation and repair

[Reggaelover]

Experience of surgery for mitral valve repair from both patient and expert professional perspectives.

[Sally_Scott]

Hi. I will be interested in reading your replies to your question as in January I am having a new mitral valve, repair of Atrium valve and a single bypass at Guys and St Thomas’s in London.

[Reggaelover in reply to Sally_Scott]

Best wishes Sally, I’ll happily share any feedback I get, although I guess you can see replies too? My surgery will be at the Freeman Hospital in Newcastle, although I don’t have a date for surgery yet. Mine will likely involve mitral valve repair and an ablation procedure to reduce risk of further AF in the future. Cardioversion has kept me in normal rhythm so far. Kind regards 🙏

[Anon2023 in reply to Reggaelover]

hi. I’ve had two mitral valve replacements as opposed to repairs and both were carried out at the Freeman. The same surgeon did both and was amazing. I had open heart surgery on both occasions. The Freeman has an excellent reputation and do these types of operations every day. Try not to worry. Good luck.

[Reggaelover in reply to Anon2023]

Many thanks for your reassuring reply Anon2023. Yes the team there seem excellent and convenient as I live nearby. Are you at liberty to say who your surgeons were? If not, no problem. I first saw a consultant there in 2014 when I had AF after competing in a 10k race. The AF was corrected by cardioversion in 2015 and an echocardiogram revealed the mitral valve leak/regurgitation. My consultant has a specialist interest in heart valves and he has been great - although I don’t think he does the surgery.

[Anon2023 in reply to Reggaelover]

I’ll send you a direct message.

[Reggaelover in reply to Anon2023]

Many thanks. I’m not sure how to send or access direct messages but hopefully it will become obvious 🙂

[Pilgrim2]

Hi, I was diagnosed with Mitral valve regurgitation a year ago and it deteriorated significantly and I am now 3 weeks post mitral valve OH surgery. Anything particular you are looking for comment on?

[Reggaelover in reply to Pilgrim2]

Hi Pilgrim2 and thanks for your reply. I guess I’m just interested in your experience of OH surgery and your subsequent recovery - how you feel etc. I didn’t know I had a leak on my mitral valve until I had AF in 2014 as I had no symptoms. The AF was corrected by cardioversion in 2015 but returned this summer. The cardiologist said my leak had worsened, although my symptoms are very mild. I had a repeat cardioversion in November - again successful in restoring normal rhythm so far. Surgery was discussed and I met a couple of members of the surgical team at the Freeman Hospital in Newcastle. They feel I am a good candidate but I have to confess I am apprehensive at the prospect of OH surgery. Many thanks 🙏

[Pilgrim2]

I guess it depends what they told you if your outlook. I spent some time with very minor symptoms, but as it deteriorated I was told I could die in 2-3 years without the op - so a no brainer for me! I would say if they feel it inevitable you will need surgery then the sooner the better as you will be in better condition to recover. However, many go on for years with minor symptoms, one to discuss with your consultant. My surgery went well and I felt surprisingly good the day after, just quite woozy from the drugs. Like many, I was happily surprised how little pain there was. By the 3rd day I was just on paracetamol and to be honest probably could have gone without those.

I was disappointed to find how much it had knocked me back physically and I could only take about 1/3rd breath and any activity was a struggle. I won't lie and it is a slow recovery. Three weeks in and I can walk slowly for 10 mins on a good day. Stairs still are tough and I cannot lift much more than a book. But apart from a few episodes of palpitations/afib the heart feels better than before and it's just the body that needs to mend. I hope that's the sort of reply you were after, feel free to ask anything else and good luck with your journey.

[Reggaelover in reply to Pilgrim2]

I can see why surgery was a no brainier for you - only two or three years to live without it must have been tough to hear. My consultant hasn’t given any indication of prognosis without valve repair surgery for me. However, he said that it was best to do the surgery while I still have normal heart function and am still young and fit - that was a compliment as I don’t see 62 as that young 🙂

It’s good to hear that the surgery went well for you, especially regarding pain management. However, I can appreciate your frustration at the slow recovery in terms of breathing and physical activity. Is your reduced breathing capacity a function of your chest and rib cage damage or restricted heart function - and do you have any indication as to how long these will take to return to normal?

[Pilgrim2]

Yes a bit of a shocker when they told me, although at the beginning when I had mild symptoms they said it could be many years before I had any real problems, but that didn't turn out to be the case for me and I was glad I went on the list as it was a 6 month wait.The reduced breathing function was my lungs not heart. I have heard that sometimes due to what they do to you your lungs can collapse (I cannot say that is what happened to me) but they did say the lack of breath was common and it should improve over time. Now at 3 weeks it has improved and I would say I'm at 2/3 capacity.

They say there are big step improvements around 6-8 weeks which I am very much looking forward to. And it's known that it's around 12 weeks before your sternum has fully knitted again. But everyone of course is different and some will be quicker and some slower. At 62 and in otherwise good health you should be fine (I'm pretty similar at 59 and hey, that's not old!). 😁. Let me know if you want to know about anything else, happy to answer, as others on the forum usually are too.

[Reggaelover in reply to Pilgrim2]

Glad to hear your positive news and thank you for your positive and encouraging comments. As they say: onwards and upwards 🙂

[Hidden]

I'm 2 years post MV repair surgery and I can only say wow!! what a difference. The journey has had its ups and downs as should be expected. I did what I was advised by the cardiac team and over time the pain and discomfort faded whilst all the time my strength, confidence and life activities blossomed.

Initially post surgery was fine but unfortunately 2 weeks into my recovery my wound got infected which then took a further 3 months to clear up and fully heal. Knock on effect of that was my rehab was delayed.

I've walked daily since the surgery, Initially the few steps up and down the ward to the 5 KM or so nowadays.

6 months on I started working partime again, now back full time.

One year on I acquired an allotment, probably the thing that has had the most positive impact on my life. That's both physically and mentally.

Two years on, my son and I climbed Snowdon. Although delayed a year, because of my earlier recovery setbacks, it was another of my recovery goals achieved. I'm currently looking at what my 3rd year post surgery challenge could be.

The surgery has given me an opportunity to re-engage and enjoy life, I believe it only right to make the best of that opportunity and show my gratitude to the skills and care afforded to me by the cardiac team at the Brompton in London.

Good luck to you on your journey.

[Reggaelover in reply to Hidden]

Many thanks for sharing your wonderful story. Sad to hear about the setbacks but great to hear about the positives and how these grew with your recovery. From what I hear, the mental health aspects are just as important as the physical ones. Your good wishes for my own journey are much appreciated.

[Anon2023]

Hi. I forgot to say to you that if heart surgery is on the cards for you then you should be booking an appointment with your dentist. They won’t do the surgery unless your teeth are ok due to the risk of endocarditis. It’s a very small risk but I had to produce a letter from my dentist before surgery saying that I’d had a check up and that there were no problems with my teeth. Given the problems with getting dental appointments I thought I’d better tell you now incase you needed any work done. Best wishes.

[Reggaelover in reply to Anon2023]

Hi Anon 2023, yes we have a good dentist and have regular checkups. I’m sure I could get a letter if required. Many thanks for the information though.

[Mark_tourguide]

Really interested in these experiences although they’re a few months old! Just joined and likely to need MVR surgery. I see the recovery period can be longer than expected, but does it leave much physical scarring?

Thks

[Anon2023 in reply to Mark_tourguide]

hi. The recovery is quite long depending on how they do your surgery (ohs or minimally invasive). I would say that after 3 months you’ll be feeling a lot better but everybody is different. At first you’ll feel uncomfortable but I was back to sleeping on my side after 3 months. It might still ache for a bit for after that but I was off painkillers after 3 months. Everyone is different though and you might recover quicker. With regards to scarring, with ohs there is an incision the whole length of your chest from around your clavicle to underneath the breast area then there will be drain holes at the top of your abdomen. This should just be a single incision line from the sternotomy and this should heal to a single line. Different surgeons have different techniques for stitching etc but, in my experience, my surgeon did his best to keep it neat. My scar stretched so it’s about 0.5 cm wide but after 18 months it’s now fading although I’ll always be able to see it because I know it’s there. It very much depends on how your skin heals. Good luck with your surgery.

[Reggaelover in reply to Anon2023]

Many thanks Anon2023. I don’t have a date for the surgery yet - it may well be early next year. It will be by OHS and the surgeons plan to do a valve repair, ablation and ligation of the left atrial appendage. Will keep you posted 🙂

[Mark_tourguide]

much appreciated!🥹