Hope!

[AnneTS]

Having experienced complex AF for more years than I care to count, 3 ablations, innumerable various CCVs and in-patient care in the local CCU I am sometimes prone to despair!! How wonderful, then, to read of the latest work of Dr Sabine Ernst and to know how much research is going on in the background to help us. This forum is great on so many levels but the posting of this and other research projects really gives a lift. Thank you!!

[Hidden]

I'm currently considering being involved in dr Ernst latest study, weighing up the pros and cons

[PeterWh in reply to Hidden]

You obviously didn't get too far at the weekend though!!! I know you are waiting on an answer from Sabine.

[Hidden in reply to PeterWh]

Yes Peter Sabine got back to me, however I don't think she could answer my main question of,

Could the procedure if not successful aggravate my AF and make it worse than it currently is?

[PeterWh in reply to Hidden]

There are a number on the forum who would say yes it can get worse and mine has since I had my ablation 17 months ago.

The question is whether that was the ablation itself that caused or triggered the worsening or was it natural progression? Certainly in my case I will never know.

[Hidden in reply to PeterWh]

That's my main concern, at the moment I'm quite AF free most of the time,

[carrie45 in reply to Hidden]

Hi There

I have a lovely son who is 11 years old with SVT and has had the abalation procedure in june this year. The surgeon tested him after and stated it had worked. Unfortunately my son has had two episodes in one week that were painful and lasted longer than they usually did before the procedure.

I am at a loss...............

Was told it was 95% successful but not in our case. We don't know where to go from here as beta blockers (as we were told) are only 60% successful in preventing an episode

[AnneTS in reply to carrie45]

I am so so sorry to hear about your son Carrie. Is he a patient at one of the major centres for treatment? If not is it worth the expense and disruption to seek a second opinion elsewhere? I feel for you both. Anne

[carrie45 in reply to Hidden]

Wonder why she could not answer that very important question. This is an area where they really need to look at. in my sons case it has got worse. He is only 11. Should the doctors have rushed into this procedure for him?? They gave us a cast iron guarantee saying only a very few patients need to go through the procedure again and they certainly did not mention that it could aggravate it or it could get worse. Don't feel we were really fully informed. Given 95% success rate to illuminate it was a good odds, but turned out not.........

[Hidden in reply to carrie45]

Carrie sorry to hear your sons having a rough time of it, somebody more informed than I would be able to tell you, however I believe there's a 3 month healing period where you can still experience your symptoms, otherwise talk to your EP about your concerns, he may give you an answer as to the episodes, good luck

[carrie45 in reply to Hidden]

Hi Juggsy75 Thank you for your reply. I think you have it the nail on the head when you say talk to your EP. Unfortunately he is not available or doesn't seem to want to help so all we have is a consultant cardiologist who although is extremely learned obviously with the structure of the heart and mechanisms etc but is not an EP specialist and does not alay any of our fears or concerns

[Kbuck1234]

Hi where is the detail on this procedure please?

[AnneTS]

If you contact Dr Sabine Ernst's Secretary at The Royal Brompton hospital in London you will be able to find out details of the trial program. I believe someone has posted her e-mail address but it will be on the RBHHS website. Let us know how you got on. Anne