Failed Ablations..

[SVTSophie]

Hi All,

I'm new to the group as I feel I'm stuck in a rut. I was diagnosed with SVT back in 2010 and had my first abalation when I was 20 (I'm now 23). I had my second ablation last November (2014). Everything seemed amazing since my last ablation, but last week I collapsed at work and A&E advised that the SVT was back and as worse as day 1. I'm no back on Ivabradine twice a day and verapmil 4 times a day.

After 5 years of suffering with the condition I feel like I'm ready to give up hope with this. What was the next course of actions for anyone that has more than two failed ablations? I've managed to get a cardiology appointment at the end of Jan, as this was the earliest they could do...

Thanks.

[joebob]

If you don't want to wait until the end of Jan then you could pay for a private consultation with an EP. I did this as I felt things were just taking too long and I wasn't getting the answers I wanted when I did see a cardiologist.

It will cost you a couple of hundred pounds for the initial consultation but then you are under that EP's care and the rest of your treatment will be completed on the NHS.

I spent an hour and twenty minutes with my EP and it cost me £250. I know this is a lot of money but it was definitely money well spent as he answered all of my questions in detail and gave me several different options moving forward.

[SVTSophie in reply to joebob]

Hi Joebob, where did you find a private healthcare service? As I've looked into an initial consultation here in Hampshire under a private healthcare clinic, but it says the consultation is £250 but after that they only offer stress tresting etc, which was around £2,000??!

[joebob in reply to SVTSophie]

I actually asked for recommendations on this forum and got several. I found an EP who works at Leicester Glenfield Hospital and also does private consultations at Spire Hospital Leicester.

It took a bit of calling around to get his private secretaries number. I called to make an appointment and was in the next evening.

[BobD Volunteer]

Just to clarify, I do not know if your work so far has been done by an electrophysiologist (EP) or not but there is a list by area under patient information on the main website ( AF Association) . I had three ablations for AF before mine was sorted out so this isn't the end of the road for you.

Bob

[SVTSophie in reply to BobD]

To be honest, I don't know either which is a bit worrying? Thanks for all the help and pointing in th eright direction - really appreciate it Also, fantastic news that your third has worked BobD your the first person I've come across that's given good news!

[PeterWh in reply to SVTSophie]

Some on here have had more than three.

Not sure where in Hampshire you are but my thoughts are that it is well worth coming up to London (and sometimes easier to get the train in rather than drive cross country) as there are many tied in with the main hospitals. I think that it is almost 40% of EPs are based in and around London.

I saw mine privately through health insurance and then swapped to NHS.

Feel free to contact if you need more information.

[SVTSophie in reply to PeterWh]

Well, I had my first two ablations at the Royal Brompton in London as that's where my Cardiologist is based and not sure they're equipped to do it here in Basingstoke?...

If I went down the private route, it asks me to select a treatment for the consultation but what do I select and how can I get reffered so I don't have to pay for the remaining treatment on NHS like Joebob? It's all confusing to me, but just desperate for answers!

[joebob in reply to SVTSophie]

Once you have the name of your private consultant you just need to make your appointment and then get a referral letter from your GP before you go. I didn't get this due to the short time between calling to enquire and having the appointment, and they still accepted me.

[BobD Volunteer in reply to SVTSophie]

Sophie all my three were done by Jonathan Clague at Royal Brompton. If you say who did your work it might help. I do have Jonathan's secretary's phone number and if you want it I can PM you. Jonathan does go to Basingstoke for consultations but I think all the actual work is done at RBHT in Sidney Street. I live in Devon!

Bob

[SVTSophie in reply to BobD]

OMG, It was Dr Clague, I have his secretary's number in my phone!! Haha, small world! I think he's as mad as a box of frogs to be honest and has too many paitients to remember who I am or when he last saw me! That's why I've got an appointment in January with a different cardiologist...

What are your thoughts on him?

[Geza10 in reply to BobD]

Hi bob i am due to have my 2nd ablation jan/feb its a new treatment called acutus have you heard about it

gez

[BobD Volunteer in reply to Geza10]

No sorry not on my radar. Acutus is a US company dealing in medical devices etc so it may just be a new type of catheter. Let me know if you find out.

[Geza10 in reply to BobD]

Cheers Bob will keep you informed

Gez

[BobD Volunteer]

We go back to 2005 and he WILL remember me. When we first met he told me all the things that could go wrong including death so I asked him when did he last kill somebody? He looked shocked and said he never had so I asked him to put me on his list for the week after he did as I knew he would be more careful then. That set the tone for our relationship which has benefit us both I am sure. I am due to see him in the new year myself as he likes to keep an eye on me from time to time.

I also know Sabine Ernst who is the blonde vakyrie and plays with those huge magnets and stuff. She is very good but has never treated me.

If I were you I would give Janet a call and see if Jonathan could see you and if you do see him say Bob Dove says hello..

Bob

[SVTSophie in reply to BobD]

Haha, well I'm not scheduled to see him until May :/ which is why I've opted for a second opinoin in the mean time, as he was so relecutant to opperate on me the second time and refused for the third because of my age and doesn't want me to end up with a pacemaker if the third ablation doesn't work. But no medication seems to be touching it either which is why I'm just stuck with everything?

Thanks Bob, great to talk to someone with the same cardiologist

[PeterWh in reply to SVTSophie]

You could go to professor schilling or one of his team at the London AF centre. The centre is their private practice based at the London Bridge hospital (yes by London Bridge). On the NHS side Professor Schilling heads up the Barts team. Barts heart side now incorporates the London heart hospital, one of the university medical hospitals and one or two others. Barts is the biggest and also the newest heart facility in the whole of Europe. From what you have written I would go for professor schilling himself if you can get an appointment in a reasonable time. I am under Dr Mark Earley.

[Hidden in reply to BobD]

Sorry to butt in, especially as I have never posted here before. But BobD saying "I asked him when did he last kill somebody" reminded me of an experience I had back in '98.

I was prepped for a double bypass. They gave me 4-5 Ativan tablets (I assume they had no bigger mgs. to hand) and I was very "happy" being wheeled down to the operating theatre. I was wheeled into a tiny prep room which contained what I assumed was the anaesthetist + a nurse. I was talking nineteen to the dozen while both of them ignored me. I suddenly asked the anaesthetist "Were you ever involved in one of those ops where they took off the wrong leg???" Both of them stopped whatever they were doing and stared at me. Actually, the anaesthetist glared at me. Either he had no sense of humour or he was one of these medical people who consider themselves superior to their patients. (Or maybe he HAD been involved in one of those ops ...)

Luckily the cardiac surgeon was a chatty and friendly man with an excellent reputation, so I forgot about the anaesthetist very quickly!

[BobD Volunteer]

Not sure what the answer is Sophie but Jonathan is very good and obviously cares about your future so beware of adventurous cowboys is all I say. If you did end up with a PM then at your tender age you would be looking at probably four to six replacements if you live a normal life expectancy and they could end up with nowhere to put them. Keep in touch and let us know how things go please.

[PeterWh]

Sophie. Bob is obviously thinking that you will live to well over 100!!! As I understand it currently they are expecting 15 to 20 years for PMs. I suspect that in the next few years, due to developing technology, that is likely to go to 20 + years. When I was up at the hospital last year waiting for appointment I did overhear a conversation and the person had a PM and said the old consultant she had didn't believe the length for current guidelines / manufacturers were quoting but new younger consultant did and that was saving her having a new PM for another 5 years!!!

Also I did read somewhere that some PMs (maybe all new ones?) transmit battery status data and that so far the battery usage was lower than predicted from tests. I didn't take too much notice as it didn't affect me!!!

[SVTSophie in reply to PeterWh]

Well it's safe to say I didn't visit a 'cowboy' not sure how silly you think I am BobD... I saw another cardiologist at my local hospital and now they have referred me to Dr Andrew Yue at Southampton instead as apparently Basingstoke can't treat me anymore.... So just awaiting an appointment to see Dr Yue, then he will decide from there what to do But PM's don't scare me, if it means living a somewhat 'normal' life then surely the battery replacements over the years have got to be worth it?