update / nurse

[Electricblue1]

hi all, well had chat with nurse today and she said my bisoprolol was such a low dose it was not helping me, so going back on my evening one and if that doesn’t help up the flecainide. It’s not what I wanted. All my problems are coming from my left atrium, the rest of my heart is ok so she said. I asked about another ablation but she said my atrium was so scarred that it would not help. Gutted. I asked about the Wolf mini maze but she said she it’s not gained traction in uk yet. She mentioned pace and ablate but said it’s mainly for elderly people. Has anyone ever heard if they can replace the Atrium, I’m sure I read about it but can’t remember. Just hate what the meds do when you are on a higher dose.

[BobD Volunteer]

Atrium not replaceable. Integral part of your heart.

[Electricblue1 in reply to BobD]

ok thank you. Do you know how much the Wolf mini maze is and if it would benefit me or is there any other treatment that you have heard of.

[Electricblue1 in reply to BobD]

is the atrium and the heart valve the same thing. Stupid question I know.

[wilsond in reply to Electricblue1]

No,its the top chambers of the heart. There is a really good mini video on British Heart Foundation site that explains well.

You might be thinking of the aortic valve,which leads from there.

[wilsond in reply to wilsond]

You can replace valves, and also knock out the sinus node ( the hearts natural oacemaker) and use replacement pacemaker

[Electricblue1 in reply to wilsond]

oh ok , learning so much about the heart on here. Thank you

[wilsond in reply to Electricblue1]

You are welcome! If our medics gave us credit for having a brain it would help understand whats going on,reassure us and work together to treat/ manage our conditions.Im naturally curious and questioning.( my family say 'hard boiled,bolshy,feisty,all lies!)

So,I always try and research ,from trusted sites such as here,BHF. Not Dr Google as my brother said ( microbiologist) could be a bloke or lass in spare room cobbling together some strange theory but ....but once on social media its obviously true.

Hope you get sorted out soon!

We are all here x

[Electricblue1 in reply to wilsond]

thank you, that means a lot 😊.

[Ppiman in reply to wilsond]

Google Scholar is what all researchers use, I believe, so that will be trustworthy. I must be rather lucky in having a GP and a cardiologist at Leicester who are open, straightforward and very highly informed heart-wise.

Steve

[Cat04 in reply to wilsond]

The aortic valve is the exit of the left ventricle (to the aorta) it is not in the atrium.

[Hidden in reply to Electricblue1]

The atrium are the upper chambers in your heart (the lower ones are called ventricles), the valves control the flow of blood through these chambers.

[Electricblue1 in reply to Hidden]

thank you .

[Electricblue1 in reply to Hidden]

would you have information on the Wolf mini maze and how much it would cost privately and where I would get one done .

[Hidden in reply to Electricblue1]

I'm afraid we don't have information on that procedure currently, sorry.

[Electricblue1 in reply to Hidden]

ok thank you.

[Poochmom in reply to Electricblue1]

I believe it is somewhere in the vicinity of $80,000 privately, but there is a doctor, Dr Ohtsuka in Japan who also does the wolf mini maze (trained by Dr Wolf and has been doing it for quite a while)!and it is considerably cheaper to have done there.

Saulger just had it done yesterday in Japan. He would know the answer to that one how much it is.

[Poochmom in reply to Poochmom]

Saulger is from Greece and traveled to Japan.

[Ducky2003 in reply to Electricblue1]

If you're in the UK, I believe it's around £30,000. MummyLuv is the one who can advise best but her chap, a Dr Hunter, I believe (maybe Steven) does do the maze surgery in Sheffield on the NHS.

[MummyLuv in reply to Ducky2003]

spot on with all

[FindingCaradoc]

See MummyLuv’s posts about the mini maze she had done in the UK (not Wolf and personally no idea what the difference is)

[MummyLuv in reply to FindingCaradoc]

only difference is Dr Wolf targets the ganglion plexi, and Hunter does the cox maze IV lesions on the back of the heart otherwise everything else is the same. GP’s have been found to trigger afib in paroxysmal, less so in persistent, the cox iv lesions are successful in persistent

[FindingCaradoc in reply to MummyLuv]

👍

[FindingCaradoc]

just seen from a separate post you’re now aware of MummyLuv and UK mini maze - good luck with whatever you do

[Singwell]

Did you talk to your Arrythmia Nurse about the timing of taking your Flecainide and wway from food? This might make it more effective and maybe mean you don't have to increase just yet.

[Electricblue1 in reply to Singwell]

hello, yes it’s ok to take an hour after food as well, this is better for me .

[4chickens]

I’m due to have a convergent hybrid mini maze in Sheffield on 15/12. This is a duel approach with a cardiothoracic surgeon working via keyhole on the outside of the heart mines all left side including the flutter.he will also clamp the left atrial appendage. During the same procedure an EP will ablate the inside of the heart again left side. They are anticipating some issues with the septum due to existing scaring from previous ablations. I am very fortunate to be receiving this on the nhs.

[Electricblue1 in reply to 4chickens]

hello, that’s good. What does clamping the atrium do. My scarring is on the left .

[Ducky2003 in reply to Electricblue1]

Basically, it's a little pouch that can trap blood, which can turn into a clot. By clipping it, you reduce the stroke risk.......... or that's my understanding.😊

[4chickens in reply to Electricblue1]

I forgot to mention that the surgeon in Sheffield is Mr Hunter who did Mummyluv’s procedure the EP is Dr Sahu who I know little about except Mr Hunter must trust him. If you choose to pursue the nhs route its not a horrendous wait. after the initial consultation (which I did privately) I have waited 6 months almost to the day. Good luck with whatever you decide.

[Electricblue1 in reply to 4chickens]

thank you, I’m ok on meds provided they don’t hinder my life with side effects, I’ve upped my meds and am hoping this will do the job. Unfortunately with such extensive scarring on left atrium it’s always going to be a problem. I regret drinking and smoking in my youth . It comes back to haunt you plus all the stress I’ve had over the last five years hasn’t helped.

[4chickens]

yes Ducky is correct it’s a little pouch that they clamp, which reduces the risk of clots forming and therefore stroke. If you have no other risk factors it means there is no need for anticoagulants

[JOY2THEWORLD49]

hi

IF your rest is 120 h/r and your BP is high ask your

specialist to try CCB DILTIAZEN 120mg.

I did with my private HEART SPECIALIST. I went down to 51 with

Diltiazem 180mg. Too much.

H/R DAY AVGE 77-88.

H/R NIGHT always 47 whateverI take

2.5mg PM Bisoprolol

I did try going back to AM and PM Bisoprolol. AS my H/R still 67 at 9am.

But this didnt work.

Went back to CCB.

Its worth a try. I've never been offered FLEC.. over the 3 years 4 months from stroke caused by A.F. because of undiagnosed thyroid cancer.

take care, JOY. 74. (NZ)