Mitral valve repair experiences please?

[LaverneH]

My partner is booked in for mitral valve repair, would anyone like to share their experiences please? We're wondering, amongst many other things, how long he might be expected to stay in hospital?

[Nearlymen]

Hi,

I had a Mitral valve repair and bypass about 10 weeks ago down at Southampton Spire. If there is one thing I could say to your partner that would be when you arrive at Hospital leave your worries in Reception and try to (and I know this will sound strange ) enjoy the experience ! I entered hospital on a Thursday left the following Wednesday, the whole thing was a well oiled machine everyone was really friendly and I had a laugh and a joke with everyone which really took the sting out of the situation. Funny thing was though I had no real post op pain, discomfort yes but manageable, one word of advice though if your partner gets the urge to sneeze pinch and rub their nose to take away the sensation because if not sneezing will make them hang from the ceiling like Tom in Tom and Jerry ! It's amazing how quickly you are on your feet post op and also they gave a day by day schedule saying what you'd achieve on the days following the op, and it was to be honest bang on ! I would even say after the TOE and Angiogram examinations the actual surgery was a bit of an anti climax, maybe I'm just used to hospitals now ! If you've anything specific post a reply and I'll see if I can answer it for you.

Cheerio

Clive

[LaverneH in reply to Nearlymen]

Thank you Clive, that's really helpful, I'll pass this on to him to read later and I'm sure he'll be reassured.

[Plumbtorre]

Hi

It totally depends on if the surgery in minmally invasive or not. Mine was not and I was in the Spanish hospital for two weeks after the op and when you get home there are a lot of things that are moderatly painful for while.

Best of luck

[LaverneH in reply to Plumbtorre]

Thank you Plumbtorre, luckily the surgery is minimally invasive.

[sims789]

Hi, I’m also booked in for minimally invasive mitral valve and I’ve been told around 5 days. Do you mind me asking which hospital? I’m going to Liverpool Heart and Chest.

[LaverneH in reply to sims789]

Hi sims789, apologies for the slow response. He's booked into the Bristol Heart Institute, we've now been told it will most likely be conventional rather than minimally invasive, and that the hospital stay could be anything from 5-15 days.

[sims789 in reply to LaverneH]

I wish him all the best! Bristol is an excellent heart hospital. Keep us posted on his progress 😊

[LaverneH in reply to sims789]

Thank you, and you too, when are you due in?

[Dionysio in reply to sims789]

Hi Sims789, do I understand correctly you had a minimally invasive mitral valve repair at the Liverpool Heart and Chest Hospital? Was this a robotic procedure with Paul Modi? How was the experience? I'm looking at this option right now as, although I'm asymptomatic, I'm told I need to have my mitral valve repaired.

[sims789 in reply to Dionysio]

Hi Dionysio, yes I did have minimally invasive mitral repair with Paul Modi in May last year. I actually live 300 miles away from Liverpool but knew from the start that I wanted Mr Modi as my surgeon.

During my consultation he said it would be done through right thoracotomy as I wasn’t suitable for the robot, due to my repair being complex - I had a Barlow’s valve. He also repaired my tricuspid valve and did a PFO closure during surgery.

He is a brilliant surgeon and I have no regrets whatsoever in choosing Liverpool which was also excellent.

I only have a 2inch scar, plus little scars from drainage tubes and groin incision for the heart/lung bypass.

My recovery was quick and I was fortunate enough not to have experienced any major setbacks. My heart rate was quite high when I returned home but was prescribed beta blockers. It’s now lower 60s resting which is better than pre-op!

I returned to Liverpool for 8-week post op check and again at 5months post-op. My next appointment is scheduled for October, however, this may be delayed due to current situation. If all goes well, it should be my last visit.

Please feel free to contact me and ask any questions you have - happy to help in any way

[Dionysio in reply to sims789]

Many thanks for your kind response, sims789-very reassuring!

Earlier this year I was referred to a mitral valve surgeon who only operates through sternotomy and had a few email and phone communications with him, but I never got to meet him as I was out of the country for the past few months. It's only recently that, through browsing on the internet, I found out about the existence of non-invasive techniques, including robotics, which claim to make this procedure less painful, leave a smaller scar and reduce the recovery time by about half. I thought they are worth exploring and, provided the end result is just as good and the operative risk just as small in the hands of an experienced specialist surgeon, I would like to consider this alternative option very seriously if, of course, I'm suitable.

When assessing your options did you ask other people, like I'm doing now? Did you find any factors in favour of the sternotomy option or was it an easy decision to make in favour of non-invasive?

How long did you have to stay in hospital after the operation? Did you go straight home afterwards and only returned for a check after 8 weeks? Did you experience any pain?

Grateful for your feedback 🙂

[sims789 in reply to Dionysio]

Hi, I also discovered minimally invasive techniques during my research when I was pretty certain I needed surgery.

For me, as soon as I found out more and watched the BBC One Show of Paul Modi (filmed back in 2012 I believe) discussing this procedure vs sternotomy, I absolutely knew that was the way forward for me.

My mother had the same surgery via sternotomy and she really struggled to recover - it took several months before she was back on her feet. Admittedly she was 80yrs of age which made recovery more difficult for her.

I joined a Facebook group called ‘Mitral valve repair group’ and chatted with several others who were both pre and post op. I found this invaluable and came across another person who was waiting for surgery with Mr Modi. It was very reassuring to see her go through the surgery and then post about recovery. There are many that have had sternotomy, mini right thoracotomy and robotically assisted surgery. There is always a great debate on which is the most painful!

My own experience is that I found it more uncomfortable than painful. My op was Tuesday 7th May so arrived on Liverpool on Monday 6th. Spent the night before in the ward and was first in for surgery in the morning. Surgery was long, but this was all explained to me beforehand, due to the complexity of the Barlow’s and tricuspid etc. Mr Modi also said there is always a chance that he will need to revert to sternotomy if something happened in order to keep me safe.

I awoke at around 5pm in POCCU and was transferred to a ward the next day. The only pain I felt was from the drain situated under my right rib cage. For me, that was the worst part and once they were removed it was heaven!

I was going to go home on the Friday, but they decided to keep me an extra day due to the long journey home. On the Saturday, I needed a blood transfusion so stayed until the Monday. I didn’t return to Liverpool again until my 8week check in Mr Modi’s clinic.

As soon as I was home I was pottering around and then walking short distances to begin with. At 3-4 weeks post op I was walking around 2 miles each day.

I did feel a little uncomfortable at around 8-10 weeks and think this was mainly due to tissue and nerves mending on the right side of my chest where the incision is made.

By 12 weeks post op, I was feeling really fit and well.

I definitely made the right decision for me in going for minimally invasive but also think it’s extremely important to go with a very experienced surgeon in this field.

I wish you well on your journey - keep me posted and always happy to answer any questions as they arise.

[Beechcraft350_ in reply to sims789]

i am very happy to read your story. Hope you are fine. Could you told me if you had a problem in both leaflets. I hope you can give me information thanks a lot

[sims789]

I'm pencilled in for 18th June, however, this could easily change up until I receive my formal letter (which is normally sent out around 3 weeks prior to surgery date).