Stuck in limbo (not a good feeling !!)

[Nieta]

Hello after writing previous in regards to my falls my symptoms got progressively worse with my vision being affected and periods of forgetfulness and severe headaches (I'm only 46!!!). I went to the opticians for a thorough eye health check to ensure it was not my eyes. After being informed my eye health was perfect I went back to my G.P. We put it down to the side effects of the Flecanide I had been prescribed (200 mg twice a day) after my bisoprolol was stopped due to the side effects. My G.P. stopped the medication but was unable to prescribe me an alternative as he had to speak with the cardiologist first and would also request an urgent appointment. So I have now been off medication for my paroxysmal AF, on the plus side no more side effects but my AF is no longer controlled. After hearing nothing for 2 weeks I contacted my G.Ps surgery to be informed he had emailed the cardiologist but had hard nothing back as yet. I was advised to contact his secretary, which I did. She confirmed they had received the email but the cardiologist had been so busy that he had not yet read or responded to the email. I informed her I was currently on no treatment and this concerned me. After that conversation she contacted me back several days later and informed me that she had spoken to the cardiologist who had informed her to ask me to be referred for an ablation. She also informed me that I was now on the cancellation list and when an appointment became available she would contact me (even though my appointment was due in November she informed me that he was several months behind on appointments so I would not of been seen until March or April 2018!!!). I have been reading up on ablation and the success result statistics do not look that good as do the risks related with this procedure. So I'm stuck in limbo no medication and unsure as whether to go ahead with a procedure a consultant has not even been bothered to speak to me about and waiting for an appointment 😔. .

[meadfoot]

That really is not acceptable. I know it's expensive but could you afford to pay to see an electrophysiologist either your current one assuming he is an EP or another one. I know it's not what we should have to do but just sometimes we need to take the bull by the horns and carve our own way forward. It is our health at risk so we have to be proactive as you have been and sometimes we need to be downright pushy.

I am having to pay to do something similar, not for arrhythmia this time but for a very painful condition which is driving me nuts. Today's NHS is not able to perform as it should, sadly, so we have to do whatever we can to protect our health.

If going private for an initial consultation is not an option then you are going to have to kick up a fuss to get the medical attention you need and deserve. Best wishes.

[Finvola]

Oh my - that is not the way anyone would wanted to be treated, Nieta. You have been left dangling until you are rushed into a procedure without consultation or measured advice.

I think the minimum you need to do is to see a different cardiologist (preferably an EP) who has time to deal with your health issues.

Decide what you want to do and talk to your GP telling him exactly what you are telling us and ask to be referred elsewhere. He can refer you directly to an EP privately (cost is about £200) for an initial consultation where you can discuss your options fully. After the initial consultation the EP may transfer you to his/her NHS list for review. Otherwise get pushy as meadfoot suggests and ask to be referred on the NHS.

When I faced a year-long wait to see an EP, I paid £200, was seen within days, had a treatment plan and was transferred to the EP's NHS system.

It may very well be the case that ablation is your best option but the decision should be made in consultation with you as a fully informed patient.

Very best wishes.

[BobD Volunteer]

I agree totally with what has been said and in addition must ask who put you on flecainide. My basic maths tells me that you were on 400mg a day (2 x 200 mg ) and since the maximum dose per 24hours should be 300mg I am not surprised you were being poisoned by it. Sounds like you need a second opinion fast.

[cassie46]

I very recently saw a EP privately as I was getting nowhere with my cardiologist. I got my GP to refer me to a EP of my choice at Papworth, appointment within 10 days, it cost £275 for EP and had to have a ECG which cost £85 at the end of the consultation I asked if I could go on his NHS list and he said yes. He wanted a new Echo, as the one I had done on the NHS recently was not a very good one (his words) and a 24 hour ECG monitor. These were done last week but on the NHS as I am now on his list. Hope you get this sorted soon privately or NHS.

[Brenda-j in reply to cassie46]

Hi I am about to have an Ablation at Papworth (Tuesday 10th!!) with a Dr Virdee. I just wondered who you are with, just out of interest.

[cassie46 in reply to Brenda-j]

Hi Brenda

I am with Dr Andrew Grace - I hear Dr Virdee is very good. Where do you live - locally!!!

Cassie

[Brenda-j in reply to cassie46]

I live near Woodbridge. where do you live?

Hi Cassie

I have had AF for 10 years but have put off ablation for 5 years (when it was first offered )as was pretty well controlled by Flecainide but am now taking 300 ml a day.

As I had some bad spells in the Spring and I am on the limit of Flecainide I decided to go for an ablation!

Since then I have had hardly any problems-typical ! But I have decided I must get it done although I am very fit, well and energetic now.

I m obviously a bit worried about it but just want to get it done.

I will try to keep you posted on my experience!!

[cassie46 in reply to Brenda-j]

Hi Brenda

I live in Peterborough. Good luck for tomorrow - let me know how you get on.

Cassie

[Brenda-j in reply to cassie46]

All done!

Really pleased it is all done and not half as scary as I thought it would be. The staff were wonderful and made me feel at ease and looked after me very well. I went in yesterday morning - had Ablation at 2pm then back in my room 5.30 and felt okay. Minor little aches had 2 parecetamols and fine. They monitored me overnight. I was surprised how good I felt and slept okay. My husband collected me at 9am. Now at home and making the most of having hubby look after me. I am sure I will soon get bored but will try and do as everyone advises on here and do very little for a couple of weeks. Dr Virdee said it all went very well and is hopeful that I will be fixed. Here's hoping! Good luck with yours. It is a great hospital. I live in Suffolk the other side of Papworth. If I needed another I wouldn't be half as scared as I was this time. Keep well x

[Jenbo6]

I went privately in Leicester and it wasn't as expensive. I self referred - try ringing your local private hospital to see if they need a GP referral. I wrote a detailed but brief description of my issues to hand to the consultant before I went in so that I remembered everything I needed to say. I'd definitely change consultant as yours seems a bit rushed and stressed - don't fancy him doing an ablation!! Good luck. Let us know how you get on.

[Mike11]

I totally agree with the others. Pay to see a top EP and get him/her to tell your GP what are the correct drugs and dosages to try, and if needed to put you on the NHS list for an ablation. And remember this doesn't have to be in your area so your GP can shop around for the shortest waiting list.

[Mike11]

Oh and ablations have a pretty good success rate. Many people do need more than one to fix things but usually things are better even after a 'failed' one. Also risks are pretty minimal - my EP quoted his risk rate as 1 in 800, i.e one every 2-3 years.

[TenorJK]

I have been on Flecaide for nearly 10years 100mg am and pm with no bad side effects Then I had a episode of PAF and they upped the dose to 150mg twice a day and it was dreadful very bad dizziness etc. 300mg is maximum dose per 24hrs according to the instructions.i reduced the dose back to 100mg( advice of GP) and have been ok. I have not had another episode of PAF for over a year so fingers crossed.

It is no wonder you felt bad on 400mg. Best Wishes to you and get another opinion if you can. Jo