From London to Bordeaux - via Shannon, Jackie & Gill!!

Hey all, this could be looooong so bear with me but I feel my AF and ablation stories might be of benefit to some of our community so here goes my version of war and peace!

A brief history: a 32yr old male, I was diagnosed with parox AF in Jan 2013 but looking back prob suffered for 2-3yrs previously before my wife made me visit a GP (typical man!). Was also told I had a hyperthyroid condition and that this was causing the AF. I had always been sporty but had realised my fitness levels had subsided greatly in the last few yrs but just put it down to the aging process.....!!

I spent 6months on thyroid meds and in persistent AF 24/7 until docs were happy for me to undertake heart treatment. I was made severely hypothyroid in the process but all heart docs were happy as they only recognised hyPERthyroid to be an issue......

Thyroid diagnosis and treatment I have since learnt are even more of a nightmare than AF diagnosis and treatments!!

Once thyroid was (dubiously) 'controlled' in hyPOthyroid status I underwent 2cardioversions in the summer of 2013. I was told these would def solve my problem!! Each failed miserably. NSR only remained for a matter of days before dreaded AF returned

I was then put on large doses of flecainide, bisoprolol, pradaxa but developed a 5-6days in NSR followed by 2-3days in AF cycle that was religious for the next 6months.

During that time I found this website (thank god!). I tried to take on-board all the experiences of fellow sufferers and applied the strategy. To Shannon, Jackie, Gill, George N I will always be eternally grateful for the advice and time they spent aiding me you really are the best of people. It was all a huge help but I still couldn't break the 5days NSR/3days AF cycle.

The deciding factor for me with regards an ablation was that my families quality of life and my work life were suffering immeasurably. My fear of the ablation procedure was outweighed heavily by these issues.

I researched ablations on the forum intensely (like I'm guessing we all have done!) and loathed the fact that London did not have a Natalè/Jais/Haissaguerre.........

I visited many UK EPs and was told that I was paroxysmal AF. I said I thought I was persistent as my AF lasted longer than 48hrs but they were having none of it!! I was relieved to hear them all say that as I knew the fix would be more straightforward but deep down I wasn't so sure about their diagnosis.....

I settled on Prof Richard Schilling as he was the best of the bunch I saw.

Schilling told me to continue taking meds all the way up to day before the procedure and it didn't matter whether I came to him in NSR or AF as he was so sure that he would only need to isolate my PVs and that would do the trick. He would not challenge his legions thereafter as a rule.

I thought long and hard about this (still believing I was a persistent case) and decided if I put myself into AF (a light jog would always do the trick - adrenergic AF sufferer) the day before the op then at least if the PV isolation didn't end the AF then Schilling would have to carry on his quest during the op to see where the issues really lay.

Had the op on 07/02/14.

The 1-2 hr op he suggested it would be turned into a 4-5hr op....

My PVs re-connected quickly and he struggled isolating these. When he finally did, AF remained. He had to ablate my coronary sinus, mitral isthmus line and right isthmus to get me into NSR.

After the op he told me I was now deemed a 'persistent' case!! Small mercies hey!! I was filled with dread when he uttered those words as I knew there were very few people up to the task of doing a one and done on a persistent case.....

Large periods of AF/AT all came and went in the following two weeks and I was told this was just blanking period inflammation..... I had severe bruising down my entire leg down to my knee and found it extremely painful to walk for the first 2weeks (my poor wife....and she thought having to listen to me during a bout of man-flu was bad!!)

Well I went into continuous AT for 59plus days after that and Schilling then offered me an early re-do at 8wks post first op.

Again, he said it would be a quick op and he was sure just one of my PVs had reconnected. I think I would have gone with him a second time (healthcare covering the costs) but the fact he still wouldn't challenge his lesions didn't sit well with me.

While I was thankful for his work I also felt let down. Thankful for the fact that first and foremost he is a most thorough man and my safety was never in question (his reasoning for not challenging his work was that he could cause AF in anyone by doing that and thus ablate areas that didn't need work......he was not a butcher and had to be able to live with himself after. All of which I couldn't question but realised it was a piece-meal approach and that it could take me 3-4 ablations to get fixed at minimum 3month intervals....I wasn't going to lose another yr of my life.

Also, if I had gone into the op in NSR like he suggested and had my PVs isolated only then day 2/3 after the op, when AF always cyclically struck, then I would have been told the same inflammation was causing the issue and we would have to wait 3months before we could go again.....the inflammation wouldn't have been the issue as my CS and Isthmus area would have been rearing their ugly head had I not caused AF and made him attack these areas.

I took on board great advice from Shannon, Jackie and Gill during this period and just plumped for Bordeaux and demanded Pr Jais carry out the op.

I spoke with Schilling about my decision and he had no qualms even endorsing the fact that I should ensure Pr Jais carry out the procedure. However he would not carry out the TOE Bordeaux wanted to be carried out a wk before the admission as he didn't want any finger pointing if there was confusion between the two. Maybe a polite way of washing his hands of me!!

I then visited Sabine Ernst (for the first time) about a wk before my Bordeaux appointment. I told her my (life!) story and she seemed to be singing from the same Bordeaux hymn sheet that I was indeed early persistent and that she would have liked to perform the 2nd op on me but if I still went with Bordeaux she would like to continue my aftercare. This was a perfect solution for me. She is such a caring lady that I know I couldn't be in better hands for the aftercare. I seriously considered cancelling Bordeaux and going with her until Shannon gave me a Sedona styled pep-talk and re-focused my mind

The Bordeaux team were nothing but extremely helpful pre-op (Laurence Bayle is a lovely lady who dealt with all the booking formalities).

I had huge reservations about the cost, language difficulties, travel issues but thought it would all be worthwhile if I even felt some life improvement with the condition...

I shouldnt have worried about the care. The nurses and hospital staff were amazing! Any language difficulties were minimal as the majority of the staff spoke better English than me! The ones that didn't were still able to get across their message!! There was a lot of laughter along the way as I tried to improve my pidgeon French!! The hospital decor leaves a lot to be desired but I comforted myself in the fact that they pump all their funding into technology not shades of paint!!

Pr Jais carried out the op on 29/4/14. All 4 PVs had reconnected and all isthmus lines needed re-ablating.......I was delighted I had gone to Jais and felt let down again by Schilling.....

I had a fever post op that they put down to inflammation around my heart and they changed my meds to the dreaded amiodarone......the nurses wouldnt let me get out of bed for the first two days after the op and hey presto, no bruising and no pain walking. Very unlike the UK where you get shipped out the next morning after the op and just told to rest up as best you can!!

I had a pretty good first 2weeks with only 3-4hr AF intervals every 2nd /3rd day and after week 3things have calmed down considerably.

I am now 7.5wks post op and and feeling pretty good. Have been in NSR for 4wks plus so fingers crossed and have reduced my amiodarone meds slightly under Sabine Ernst guidance. I have stopped thyroid meds as it seems I was Mis-diagnosed in the first instance, grrrrrrrr! Dr peatfield and Sarah myhill are now aiding me as are the TPAUK forum guys. There really are some nice people out there

The last 2-3wks have been the hardest of my life for family reasons yet my NSR remains, though I would trade it in an instant to reverse my personal circumstance......if ever my NSR was to be tested then it was and is being but Pr Jais work still holds firm.

There is an end to the AF burden we are all just on different points in the journey.

I hope this is of help to some.

Best wishes,

Paul

Wow that is an amazing story and just puts an exclamation mark on why you should seek out the BEST!
Everything reconnected just boggles my mind, Natale's reconnections are almost zero and he uses high isoproterenol to challenge his ablation lines. The good doctors at Bordeaux are also at the top, you picked the BEST.
Those Shannon Sedona styled pep-talk pep talks is what I needed as I was ready to back-out of my Natale ablation or postpone it to wait for a FIRM ablation....Hey whatever happened with that HYPE? So I met the Maestro last May 28 for the first time for a consultation and 45 mins latter we decided to just do it right then and there!
I'm 13 months post-up with Natale, pure NSR now!

Best to you and no worries with Dr Jais as I would have gladly went to him too!

McHale

Your story is pretty scarcy, hope all will be well for you. About your thyroid, you believe you were misdiagnosed, but you are taking Aminodarone , which has the ability to make you either hypo or hyper.

liz

Hi Liz, its helpful to know that Paul only started on Amioderone after his Bordeaux ablation. Prof Jais wanted him to stay on it for a while to help stabilized Paul's heart some in the months after his second ablation and first at Bordeaux. In light of the difficulty Paul had after his first ablation and his up and down thyroid action at such a relatively young age, I can understand Dr Jais wanting to add Amio for a while. Whether Paul had spent much, if any time at all on a Amioderone a long time prior to the time he Discovered our site and well before he and I started our running dialogue on how best to navigate his challenging roller coaster of an experience the last few years, I don't recall.

But he was not on Amio anytime soon leading up to the first ablation with Schillings and follow up two months later with Jais.

Nevertheless you are right too Liz, Amio can very easily screw around with your thyroid function such that the person can start to swing between Hypo and Hyper thyroid function which is very tough to treat and can be quite discouraging to deal with as you know.

Shannon



Edited 1 time(s). Last edit at 06/22/2014 06:22PM by Shannon.

Wow Paul that is quite an excruciating journey. I'm quickly approaching my one year Pr. Jais ablation, and I couldn't be happier. I too did lots of research and interviewed a number of local (western Canada) EP's. Along the way I was given lots of song and dance about what drugs I had to be on before they would operate here. I didn't buy it. The icing on the cake was being told to go on Bisoprol. A quick google search proved in no uncertain terms that it was not appropriate with sinus bradycardia, and therefore a bad choice for me.

The local clinic had gone from a mortality rate that was posted in their brochure of 1:3000, to a very recent change of 1:1000 and a risk of complications of 6%. The main EP had done fewer than 500 ablations.

And then I started hearing the anecdotal experiences. Like one reader of this blog with a similar pathology of receiving 54 burns over a 5 hour operation. (In comparison my first operation with Jais was 14 burns in a 2 hour procedure).

I find it funny that very few people,outside of the afib community can understand why I would go to France. Especially when I run across doctors or nurses on a social basis. They act like I'm some kind of a fanatic!

Anyhow, as you mentioned, the decor in Bordeaux left me with initial trepidation, but once I was in their hands I felt good. I did have to go in for a touch up 5 weeks later, but since then it has been clear sailing.

Perhaps because of the second operation, or perhaps because me body was so exhausted, but it took a full 6 months before I started to feel strong again. My thyroid and adrenals are still struggling, but everyday gets a little bit better.

Ron

Hey all,

Thanks for the well wishes.

McHale - I remember reading your story last yr and being very envious of you having a designer ablation by the great man! Esp as you had it almost immediately after just mtg him!! You knew what was right for you, wasted no time and just got on with it. I wish I had been so determined to see the best EP available to me when I finally decided to go the ablation route. I hope my story is of help to some people who are considering their options. I think for paroxysmal ablations Prof Schilling would have been a great choice as he is a most thorough man but when we are talking persistent AF - well only the elite will do if you want any kind of closure in 1-2ablations. Well that is my tuppence-worth on that topic! Am delighted your NSR remains McHale and am sure it will do

Liz- sorry, I didn't really explain my thyroid issues as I thought peeps wouldn't really be interested in that part of my tale of woe!! When diagnosed with AF I was told I had a thyroid issue and was sent to an endocrinologist.

He told me I had Graves as my TSH was 0.02. Doc purely based his diagnosis off TSH reading...................he also got a T4 reading per blood test but placed no emphasis on it, TSH all the way

So he put me on varying doses of carbimazole and made me extremely hyPOthyroid (TSH ranging from 5.0-25.0). Eventually he reduced the carbimazole dosage to minimal amounts and got my TSH to 4.8ish. He said I was 'controlled' and if I still felt bad then maybe it was time to see a psychiatrist!!!! I shook his hand and just walked out. Took great advice on board from Jackie and Shannon and eventually joined the TPAUK forum. They explained what had been happening to me during this time and why I felt so poorly......all this on top of the persistent AF!!

They put me in touch with an endocrinologist in London who as soon as he saw me told me I was very sick without even looking at my blood results. He took me off carbimazole and said it seemed my thyroid was 'burnt out' but I had antibodies which def made me Hashimoto and possibly hashitoxicosis. But at least I was now being diagnosed correctly!!

I then went for my 2nd ablation (the one described above with Pr Jais) and unfortunately they put me on ami as the flecainide was doing nothing for me.

Am hoping to get off it soon as you quite rightly say, it can cause huge thyroid swings......my latest results have been:
TSH - 5.10
FT3 - 3.9
FT4 - 16.3

So think I am going hyPO on the ami but hopefully if heart remains stable I can get off the ami and let my thyroid heal. Am not taking any thyroxine but I know endo is thinking maybe I should, tho he has also suggested I just remove my thyroid if I seem to be suffering from hashitoxicosis. Damn, this thyroid business isn't easy is it!!
My adrenals are on the floor also according to the Genova saliva tests.

Ron B - it was act your Bordeaux post which I used as my tour guide when landing!! It gave me such a great insight into what I would come across so I am hugely thankful. Was so helpful to me that I thought I owed it to post my experiences (of abs first class care and results) on the BB so that others might benefit and take that great big leap of faith to Bordeaux if they are plumping for an ablation! Am delighted NSR remains for you have just started using a hydrocortisone cream (10-20mg/day) to see if that helps take the pressure off my adrenals. Do you use HC at all?

BIG smiles to you all,

Paul