Any members with Atrial Myxoma?

[Dearnechick]

Hello, I have just been diagnosed with an Atrial Myxoma & I'm awaiting surgery in the next few days, are there any other members with this condition?

[MichaelJH Heart Star]

Hello and welcome to the forum! There are a number of members who have had a Myxoma. Hopefully one of them will be along soon. You could also do a search for "Myxoma".

By the way how was your condition diagnosed?

[Dearnechick in reply to MichaelJH]

Thank you Michael, it was diagnosed during an echocardiogram on Friday this week.

[MichaelJH Heart Star in reply to Dearnechick]

Was the echo routine (sometimes done pre surgery or to investigate other symptoms like odema) or specifically for a heart issue? Feel free not to answer if you wish.

[Dearnechick in reply to MichaelJH]

I have had paroxysmal AF intermittently over the past 4 years or so, after the first episode I had investigations & was started on blood thinners & Bisoprolol to treat it which has been successful. For the past 6 months or so my blood pressure has been high, my GP has been altering my meds to try & get it under control. About a month ago I suddenly had a massive drop in blood pressure & ended up in A&E, the Dr told me he could hear a heart murmur & recommended that I ask my GP to refer me for another echo. My GP could not hear a murmur & was reluctant to refer me for the echo as my last one was clear but she did as she could see I was worried about the murmur, then I was diagnosed with the Myxoma.

[MichaelJH Heart Star in reply to Dearnechick]

I am glad you got that echocardiogram. Echos are relatively cheap and simple tests. In fact when waiting for bypass surgery mine was repeated at six months. How long ago was your original one.?

[Dearnechick in reply to MichaelJH]

It was just over 4 years ago Michael.

[MichaelJH Heart Star in reply to Dearnechick]

My understanding is that any echo three years or over is of no real value apart from monitoring progression of an issue. With mild mitral regurgitation (a potential cause if a murmer) they recommend every two years and if moderate yearly. I am really glad you had it done.

[Dearnechick in reply to MichaelJH]

Me too Michael, I dread to think what may have happened if my GP had refused. The worst thing was the Dr in A&E did not mention the murmur he had found in my discharge letter to the GP so it's a good job I followed it up.

[MichaelJH Heart Star in reply to Dearnechick]

Sadly communication is poorer than it was in the days of shorthand and typing. One of my referral letters omitted that I was a lifelong Type I diabetic and I had CVD. It does not inspire confidence! Locally most letters are dictated, and typed and sent out unsigned remotely.

As for the EPR (Electronic Patient Record) do not even get me started! ☹️

[Dearnechick in reply to MichaelJH]

So sorry to hear you've had a bad experience, I hope things improve moving forward. Luckily I'm now in a different hospital & it seems more professional & efficient so far.

[consort17]

Hello I was also been diagnosed with a Myxoma a few weeks ago ,going for a MRI tomorrow hopefully will have a date for surgery soon after

[Dearnechick in reply to consort17]

Hello, thank you for replying, I hope everything goes well with your treatment, please keep in touch. I should be having the tumour removed in the next few days.

[consort17 in reply to Dearnechick]

Hi have you had your op yet ? I'll understand if you cannot reply and wish you a speedy recovery

I had MRI on Tuesday and thought I would have had heard from the consultant but no word yet - so frustrating

[Dearnechick in reply to Dearnechick]

Hello, I had my op on the 20th & I was discharged from hospital yesterday evening, thank you so much, recovering rapidly so far. Have you heard anything from your consultant yet?

[Hidden]

Hi,

Sorry for the late reply, yes I too have had surgery to remove a Myxoma last May. I see you’ve had your operation now, I wish you all the best. If you want to ask me anything about the recovery please feel free.

Elaine. ❤️

[Dearnechick in reply to Hidden]

Thank you so much for your reply. I would be so thankful for any advice you could offer. My concerns at the moment are getting back to work, I'm a nurse with quite a physically demanding job, how long did it take for you to feel recovered & back to normal?

[Hidden]

Everybody is different I’m ten months on now and I know I’m still not fully up to speed. What I would say is don’t rush things, I was told by the surgeon that it can take 12 to 18 months to repair internally. Some people seem to bounce back. I sincerely hope you are one of them.

I thought once the operation was over that was it but it was then that I felt the discomfort of the nerves repairing which lasted about three months. I also felt emotional because it was such a shock. All normal after effects of what is described as a major operation. ❤️

[Dearnechick in reply to Hidden]

Thank you for your advice, I really appreciate it. I hope you will feel completely recovered very soon.

[Hidden in reply to Dearnechick]

Just out of interest was it in your left or right atrium?

[Dearnechick in reply to Hidden]

It was left atrium.

[Hidden in reply to Dearnechick]

So did they remove it through the center of your chest or through the side?

[Starshine19 in reply to Hidden]

Hi, i had a myxoma removed in Sept and was reading your post. I was interested in your comment about it taking 12/18 mths. I still get quite alot of discomfort in my chest around my scar and wondered if any one else gets this. I had issue with infections in the wound after the op and wonder how everyone else has felt after the op. Does anyone have difficulties lifting things.

[Dearnechick in reply to Starshine19]

Hello 🙂 thank you for your reply, my op was almost 4 months ago & I feel mostly back to normal. Sometimes when I sit up in bed I feel a little pressure in my sternum but it doesn't last. I returned to my job as a nurse last week & luckily I have managed ok. I wonder if your discomfort is due to the issues you had with infection. Maybe the tissue is still repairing itself.

[Starshine19 in reply to Dearnechick]

Thanks for the reply. Im glad that you have recovered well. Like you say we are all different. I have a reaction to the internal stitches so kept on getting infections, i guess this may well prolong the healing process.

Best wishes

[Hidden in reply to Starshine19]

Hi Starshine, yes I’m still having trouble with my scar! I showed the surgeon and he said it was a keloid scar ( basically over healing itself) it’s like a long swollen worm running down my chest 😬 he said that it wouldn’t be a big job to shave it off but it would probably grow back the same!

It’s 13 months since my operation now and I still have to put a soft handkerchief between my breasts when I’m in bed. I don’t have problems lifting anything now but I did for a while, everyone heals differently.

I don’t know if you have read my later posts but unfortunately a bit of the tumour was left in because it was very close to the tricuspid valve which was healthy so the surgeon quite rightly didn’t want to replace it. I will be having another MRI scan in approx four months and if it grows I will have to have surgery again.

Did you have cardiac rehab? I didn’t, my heart is really healthy apart from the original tumour which was benign.

Both my daughters had echocardiograms after the surgeon advised it and they were both okay.

Look after yourself

Elaine ❤️

[Starshine19 in reply to Hidden]

Thank you for replying. That is interesting as i have the same worm like appearance and my wound has concave too. I get twinges that are inbetween my breast and i wonder if this was part of the healing process.

My myxoma damage my valve too so i have to have another scan to check if the valve has gone back to normal or if it needs to be repaired. I was also told that that there is a possibility that my myxoma may grow back and i too have to go back and have it checked.

Yes i did have cardic rehab, which went ok. My heart is also health apart from the myxoma.

Its great to chat to someone that has experience a similar path.

I hope all goes well.

Best wishes

Ruth

[Dearnechick]

Though the centre, the op went well but afterwards I had a pleural effusion & pneumothorax & ended up on oxygen.

[Hidden]

Then i definitely wouldn’t rush back to work. Wishing you all the best, I’m always here if you want a chat.

Take care

Elaine ❤️

[Dearnechick in reply to Hidden]

Thank you Elaine, that's lovely, same goes if you ever need a chat 😘

[Dearnechick in reply to Dearnechick]

Alison xxx

[Dawes]

Hi - sorry I missed the original post. I was diagnosed on 1st July and had open heart surgery on3rd July last year. I had been going to the GP with symptoms for 3 years. I have fibromyalgia and they thought my symptoms were related to that but I had a nagging feeling it was something more. I am generally fit and healthy but was getting out of breath walking uphill. Also dizzy if I stood up quickly (GP helpfully said do 't stand up quickly then!) I eventually had heart tests includinng 24 hour ecg and they found nothing wrong. Finally they did a scan to rule out heart problems. My atrial Myxoma was taking up 90% of my left atrium . I was admitted on the spot and had surgery at St Barts in London. I was there for 6 days - it was awful but my recovery once I was at home was swift. I didn't have time to be scared or nervous -it all happened so quickly. I was back at work after 10 weeks - did the cardiac rehab course. I don't think I really needed it as I was 'cured' but it did give me confidence that I could exercise. As soon as I was out of hospital I was going on long dog walks (not holding the lead as I have a labrador that pulls) with my husband. I think exercising asap really speeded up my recovery.

[Dearnechick in reply to Dawes]

Thank you for your reply, so glad to hear you are fully recovered. I was experiencing Atrial Fibrillation in the lead up to diagnosis, I too had a scan in hospital & didn't go home until after the surgery. Could I ask what type of job you do? I'm a nurse & wondering when will be the best time to go back as my job is physically demanding & I still feel quite fatigued at times. I am just over 6 weeks post op.

[Dawes]

I am a GIS analyst (computer mapping) so I felt well enough to go back knowing I'd be sitting down all day but being a nurse I'm sure you'll need to be 100% fit. Also I think The enormity of what had happend to me didn't hit me until I was back at work. Being a nurse it must be very hard for you knowing what your colleagues are going through right now - are you doing cardiac rehab? I found it helped me. Although I was exercising anyway by doing a lot of walking it made me confident that I could do a bit more. Also made me feel lucky that I was 'cured' - most of the group had ongoing heart problems/medication. I left hospital with just paracetamol!

[Dearnechick in reply to Dawes]

Thank you, unfortunately in my area cardiac rehab is only available for certain heart surgery patients & my condition is not included. I can pay for sessions once I've had my follow up. I have a few health conditions including type 2 Diabetes which is in my family, so I take a boat load of meds. Life certainly did not begin at 40 for me, it went downhill, I'm 44 now.