Atrial myxoma

[Leggyem]

Hello, I’m 47 & a couple of days ago I was screened to check for dilated cardiomyopathy, which my mother has. It was discovered I have Atrial myxoma & need urgent open heart surgery to remove it. I’m in shock & so scared & wandered if anyone has had this surgery & how it was for you?

[Wondrous_Walker]

hi, I had an atrial myxoma removed from my heart by open heart surgery on the 1st April 2020 (April Fool’s Day), just at the start of the pandemic. It all happened very quickly once it had been found and it’s not something you want to leave in situ! Anyway, the operation was done at Barts Hospital in London and I was sent home for convalescence after seven days. Of course, as it was during the pandemic things were done differently and I didn’t want to hang around anyway! Three and a half years later I’m still going! I’m almost 73 by the way. The surgeons know what they’re doing and take great pride in their work. I just put myself in their hands and let them get on with it! Take care and good luck!

[Bikica1234 in reply to Wondrous_Walker]

Hi ,How did they diagnose your diagnosis? What symptoms did you have?

[Wondrous_Walker in reply to Bikica1234]

Hi, well, it took me a couple of years having different tests to actually get to the point of my gp listening to my heart, noticing a murmur and me going for an echocardiogram.

My symptoms were getting short of breath very easily even though I’ve always been fit.

All I can say is, if you don’t feel right, you know your own body and what is normal for you; be persistent and don’t take no for an answer!

[Yumz199725]

I'm so sorry to hear, it must be such a shock. I did find some helpful information on BHF website though, I would attach a link but I'm not technical like that sorry. Wish you all the best with your surgery! ❤️. Only silver lining is being screened for cardiomyopathy saved your life. Take care hun x

[Jennywren2953]

Hi Leggyme,

Sorry to hear you are going through such a hard time. I had open heart surgery in May, had Annunoplasty on my Mitral and Tricuspid Valves. I also had high pulmonary hypertension. I know how scarey it is, waiting to have it done is the worst part. Personally I think having faith in your surgeon is a huge help, I did a fair bit of research on mine and I personally felt very comfortable with him.

I am so much better since the operation, not breathless and dragging myself around. I had an echo this week and showed hardly any valve leakage, so minimal that pulmonary hypertension has gone.

I was in hospital 10 days and came straight home, my daughter was a big help in the first couple of weeks till I gradually got back to cooking and doing more each day, one day at a time, and rest when your tired, I unfortunately got Shingles, and I’m 69 so that did slow me down a bit.

In saying that, I made 14kg of Relish last week and restained our timber deck, and I hadn’t been up to doing that for a few years, I also have AF and a pacemaker.

If I hadn’t had the operation my surgeon said I would probably only have 2-3 years, and heart failure isn’t a nice way to go. It’s a huge operation to us but it’s an everyday job to the surgeons, so amazing what can be done these days.

Good luck with everything, I’m sure you will be like a new person when it’s done, you’re so young🤗. Jenny

[fatbarry]

Hi Leggyem , I'm a bit shocked at your story tbh. I had an atrial myxoma removed in June this year. I'd been getting progressively more tired and anaemic all year with GP doing multiple tests culminating in a CT scan which showed a mass in my left atrium, presumed to be a clot. Long story short, a week of warfarin later I felt awful and was taken to a&e from the warfarin clinic. They did an echo, realised it wasn't a clot and then didn't let me home! Had surgery at the fantastic Liverpool heart & chest hospital less than a week later and home on day 5 after open heart surgery. First few weeks were interesting (I live on my own) but by the 6 week point I felt great and by 6 months, apart from some tenderness in my sternum, I'm completely back to normal, going to gym, living life to the full. Please get in touch if you want any more details or just someone to moan to. Good luck, I hope you get seen to quickly. Xxx

[Leggyem in reply to fatbarry]

Hi there, thanks for your message. I’m 4 weeks post op today, they were not hanging about. I had my surgery done at the John Radcliffe in Oxford & was in for 5 nights. Still seems surreal that all this happened! Like you I had been so tired for a good couple years prior & doctors couldn’t work out why. I’m hoping I will start to feel the benefits soon but have only had 2 half decent nights sleep since I came home & have to sleep literally sat up which is horrible as I am a side sleeper. Currently struggling with awful pain in with shoulders & back, which apparently is due to the surgery. I don’t know how you managed to look after yourself during those first couple of weeks, so respect to you & so reassuring to hear your doing so well now, gives me some hope that hopefully soon I will feel the benefits!

[fatbarry in reply to Leggyem]

I'm sorry I missed this update but glad you've been seen to! Bringing in Hidden as well

I remember the shoulder and collarbone pain well - think that was the worst thing after the first week. Mine did go eventually - probably by the 4month mark so there is light at the end of the tunnel, even though it felt like a very long tunnel at the time! The other thing that I found really horrible was the pain from deep breathing. I used to be a singer and my singing teacher always said that if you breathe properly you don't get coughs - sounds weird but I'm convinced that it's true and I'm sure that the deep breathing exercises post-op did help, even though they weren't fun. I bought a little incentive spirometer from Amazon too.

I did sleep half on my side after a couple of weeks (mainly because my bum was sooooo sore with lying propped up in bed) but I'm not sure that was a good idea sternum-pain-wise.

Even in the early days though I felt so much better in myself than I had done for months that all the discomfort and inconveniences were 100% worth it (not to mention the alternative scenario!) By 6weeks my inflammation markers had come down a long way and they were completely normal by 4months.

Hidden a couple of doctor friends have said to me that the op IS like getting run over by a bus - a huge insult to your body so be kind to yourself. I kept a diary of how far I walked, pain relief, sleep/naps etc etc. On bad days it really helped to realise how far I'd come. I restarted C25K after about 4 months so that gives an indication of how good I felt (I'm 63) but had to stop after a few weeks because I pulled something in my hip 😂🙄

Hope you both do well and recover quickly - we're in a pretty exclusive club now🫀

[Hidden in reply to fatbarry]

Hi fatbarry thanks for your reply. I’m almost 8 weeks post op and definitely feeling better as each week goes by. How long did it take for the soreness and stiffness in your chest and breastbone to go and for you to be able to bend forward without it hurting? I appreciate in the great scheme of things it’s still early days but am getting impatient and wanting to do more generally but aware that I don’t want to hurt myself and make it worse?

[fatbarry in reply to Hidden]

Hi Hidden I'll be honest, it did take a while for the sternum pain to go, probably 5months before I could get up in the morning and not get a jolt from it. It did get less though and went away quite suddenly in the end. I think the bending forward pain must have gone sooner- I'd forgotten about that one! Re hurting yourself by doing too much - I did mostly stick to the guidelines from the hospital about things like hoovering but found it was obvious very quickly if you weren't ready for something!

I don't envy you having your op in the winter - the daily walks must be so difficult some days!

[Hidden in reply to fatbarry]

Thanks for your reply fatbarry I had a feeling you were going to say it would take some time for the pain to go. You’re right about it being difficult to walk everyday due to the weather. I try to get out most days and if not then potter around the house. Just getting a little frustrated now. Patience never was my strong point! Not sure if you work or are retired? I’m due to return to work in 2-3 weeks but wondering how I’ll get on. I work from home and sit at a computer all day so not active but can be quite stressful and I think my brain is on a go slow since the op.

[fatbarry in reply to Hidden]

Hi Hidden , I'm lucky enough to be retired. I remember being really shocked by the warning of potential "cognitive deficits" when I had to sign the consent form and definitely did notice that things like balancing the books (I volunteer in a local sports club) were a lot harder than they had been!! That's all back to normal now though (I think! 😂). Could you go back on a phased return? More so you have time to still go for walks and refresh your brain than the purely physical side. Try contacting occ health to see if they can help, even if it's just slightly shorter days for a couple of weeks while you ease yourself back in. Good luck, xx

[Hidden in reply to fatbarry]

Thanks fatbarry I’ve got an appointment with occupational health in a couple of weeks time and yes definitely can do a phased routine. I work for the civil service who to be honest are really good when it comes to sickness and returning to work. I’m also going to reduce my hours as this has really made me think there’s more to life than work. Unfortunately can’t afford to retire just now. Thank you so much for your advice which is most appreciated and glad to hear you’re doing well and the brain fog has gone!

[Hidden]

Hi Leggyem, I know exactly how you feel. Had been feel exhausted and breathless for months and lots of blood tests taken but no clearer on the cause. Had an echocardiogram on 22/12/23 and discovered I had a large Atrial myxoma and was sent straight to the ED then CCU. Was told that day would need open heart surgery to remove it. I was absolutely stunned and very scared but knew I had no choice. 5 days later I had it removed and was discharged yesterday. I was told by my consultant that usually the surgery is straightforward and it’s the recovery that takes the time, to take pain relieve, to follow advice given about deep breathing to and coughing to remove fluid off your lungs. TBH I feel like I’ve been run over by a bus and have hardly slept for days but trying to stay positive. Good luck for when you have your operation but you definitely need it and take your recovery day by day.

[Bikica1234]

Hi Leggyem, how did they determine that you have that diagnosis? What have you been up to since the searches?