Situs inversus.

Hi everyone, hope you all doing well. Not very often I write in forum but a few things have been bothering me?? Firstly my GP said he wouldn't recommend ablation cos position of the heart. So he put me on to 200mg of flecainide a day which was previously 100mg per day. Spoke later to cardiologist and he made appointment for August to discuss situation. The first time I met cardiologist he suggested ablation but didn't explain the risks as all my organs are mirror image. Sorry for the long story. X

[Bagrat]

Hi Sarah. I'm guessing this anatomical anomaly is one that your GP doesn't often come across and it may be rare for the Consultant too.

I guess that because of that although the principles would be the same there would be some differences in addition to the obvious one. I'm sure the Consultant will explain any additional risks.

Are you getting benefit from the increased dose. I was on that dose for a few years before being able to reduce again. I suppose it also depends how you feel about your present quality of life when it comes to making a decision.

Best wishes Wendyb

[Hidden in reply to Bagrat]

Hi bagrat, hopefully will get answers in Aug as I writing down every question that come to me. Yes flecainide is helping a lot although still have a couple of episodes but not as bad as previous ones. Thanks for your reply.

[wilsond]

Well, someone gave me what I thought was a good analogy,that EPs are the equivalent of electricians,cardiologist s the plumbers,and GPs as caretakers of a building.GPs have to know a bit about everything but not experts in anything!

My GP recently told me after my ablation I should be 'cured' of AF for ever.....!

I would try not to worry too much until you have seen your cardiologist,is he or she the only person available?do you have an EP in your area,as these are the people with most knowledge.Perhaps spend some of your waiting time researching locally,in case you might feel a second opinion is needed after August?

I was also prescribed 200mg of flecanaide after a prolonged series of AF episode s over the winter,but recently able to reduce to 100mg.This was due to a fair bit of dizziness and blurred side vision,and so far so good.I hope you get on ok. Xx

[Hidden in reply to wilsond]

Hi Wilsond, thanks for the reply. Don't know if there is a EP near me as I have only ever seen cardio since first diagnosed. Flecainide seems to be helping with no serious side effects but for how long?? Will just continue with meds until August when hopefully I will get more answers.

[wilsond in reply to Hidden]

Im sure you have a better idea of what they can do for you then.Best wishes x

[BobD Volunteer]

GPs seldom know much about AF to be honest and I wonder who it was who prescribed flecainide. In UK this drug is usually only prescribed by consultant level cardiologists or after instruction from such by a GP. It is also often combined with a beta blocker.

Has your stroke risk been assessed and have you been recommended anticoagulants? What other tests have been done on you heart recently such as echocardiogram ?

I agree that your condition may make ablation more difficult so it would be a brave EP who went that route I fear. Success comes from repeated actions so it may well be a "first" for the specialist should they proceed..

Although I am a great fan of ablation it must be understood that ANY treatment for AF is only ever about improving quality of life as there is currently no guaranteed long term cure.

[Hidden]

Hi Bob D. No one has mentioned stroke risk but since you Brought it to my attention I will certainly ask in Aug. Was on warfarin but changed to edoxaban.

[giada in reply to Hidden]

try Xarelto

[Finvola]

Hello Sarah - there are some world class EP’s in the UK and with your special circumstances, I would think that you could get a referral to a centre of excellence, should you and your cardiologist wish it. It might be worth bringing this up, depending on how your cardiologist views things.

Regarding Flecainide, I’ve been taking 200mg daily for the last four years and it has really been a friend to me. I do hope that you find the increased dose settles your heart.

[wilsond]

If you are already on anticoagulants (which you are) you are better protected.That is the reason for being on them,so dont worry overmuch now.

[Hidden]

Thanks everyone for your support, I feel more settled now and less worried. X

[Patasquith]

Hi Sarah not much help but just wanted to say my mother was situs invert is And was always a guinapig for consultants to bring students to examine her when in hospital. She had high bp and I suspect other effects but lived happily to 82yrs old with very little medications. Interestingly one of my cousins is also SI (on my fathers side) and has chronic lung and heart problems really needs a heart lung transplant but cannot have because of SI he is under consultants at Newcastle Freeman hospital so if you were anywhere near there they obviously have experience. Hope this is of interest to you

[Hidden in reply to Patasquith]

Hi, thank you very much for sharing that. That's exactly how I felt when met cardiologist an experiment!! Also lungs not working very well so I attend respiratory clinic, they don't seem to think the two are connected?? I've always thought so. X

[Ianc2]

I will apologise in advance..If your organs are in reverse order you will probably need a backwards doctor.....

[silviageci]

GP does not have the required knowledge to know whether you need or can have an ablation, mostly general cordiologist either, you should see an Electrophysiologist, a Cardiologist that specializes in electrical problems with the heart, they have to study two years more after becoming Cardiologists to become EPs.

[Hidden]

OK, didn't know that. I will ask to see an EP next time. Thanks. Getting different answers fro doctors and cardiologist.