Mitral Valve Prolapse (Regurgitation - Flailing Leaflet)

[gfmet17]

Hi

I have just, for the first time, posted here: -

healthunlocked.com/bhf/post...

That is a year long thread but I felt it was bang on for my condition. I'd like to explore what any restrictions there may be to undergoe "Keyhole" surgery (Minimally Invasive surgery) rather than what has been offered - a Sternotomy or an Open Heart jobby. I have introduced myself there and would like any information I need to persue Minimally Invasive surgery on the NHS please

Thanks

[Glemham]

I too, at the age of 68, have severe regurgitation, only found this year, because of mitral valve prolapse and am due to have my op later in November. It is scheduled to be keyhole. When I was first referred to the local hospital, I asked about that possibility but was told it would be very unlikely. However my request was noted on the letter sent to the hospital, where I’ll be having the op, and my appointment there came through to be with a consultant, who specialises in mitral valves and less invasive surgery. Because the valve is the only issue I have, my arteries are disease free, and he is going to be able to do keyhole. I feel very lucky. It’s not easily available and only a very few surgeons have the expertise and experience to perform it. He said the recovery is much easier and overall his attitude was very reassuring and positive.. My advice would be to ask formally if you are suitable for keyhole and get referred to a Heart Institute, where there is the possibility of having this done. I’ll post again after my op on how it’s gone, as it’s a bit of a rarity still, and imagine some feedback would be of interest to others with valve issues.

[gfmet17 in reply to Glemham]

Hi - thank you so much for replying to my first post, I am very grateful.

Your circumstances seem to match my own in that I believe I am in a good state of health (which the Angiogram and TOE will hopefully confirm) and in particular, my prolapsed and flailing valve is my only issue. That said "is it severe?" - I don't think it is but in the last year I can get breathless more regularly than I did a year ago, despite the fact that I can walk miles without any issue. This makes me question if I need the valve op now. Indeed this raises its head every year and I suppose is because the "window of opportunity" is still open! How long will this window remain open? Not sure - I was diagnosed in 2001 but have probably had the condition since my teens. When I used to play squash in my 30's, I used to get so out of breath that I needed to take a minute or two time-out to recover my breath. Then though, I could carry on as before. I thought this was normal for such an active sport! My original Consultant said to me years ago - "you would be able to climb Mount Everest but you won't get up there as quickly as the others!". I have to assume therefore that I am at the limit of this window. Since I posted I have found a hospital that does Minimally Invasive Surgery and have spoken with the Surgeon's secretary - I need to get the referral once I've had the Angio and the TOE. What I don't know however is, how does my Cardiologist work out whether my valve is suitable or not for MIS? He did say on Monday that assuming I proceed to surgery, a decision will be made then whether to repair or replace, although it's more than likely that they will repair. Again this points to a routine op, although I'm guessing now. I have written to the local PALS in order to flag up that I would like to be put forward for MIS at the hospital I have spoken to and I daresay I will speak with my Cardiologist again at the time of my Angio / TOE.

Of course I'd like to do more research in the mean time, as I like to be fully informed, but I really do not know where to start. It was hard enough researching hospitals who undertake MIS! Has anyone any information on what criteria is considered before MIS is recommended? This would be so gratefully received.

Thanks also SaraTwycross for your post - yes, this is exactly why I would like MIS, after all we are now in 2019 and the NHS has been doing these ops since 2008, so I am surprised that MIS is still a rarity! Hugs back

[SaraTwycross]

Hi i am sorry your going through this. I have a metal mitral valve which i had open heart for years ago. I have also had keyhole surgery for stents i had fitted. In general the ke,yhole surgery is kess invasiage and quicker healing time, i have been told its the preffered method these days. In some cases it can be done under local anethestic which is easier too. Hope it goes well for you hugs sara