Question - and thanks

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Question - and thanks

Postby AlexNelson » Mon Oct 19, 2009 2:01 pm

What's left to say or ask? This forum seems to have it all covered - it's great. I guess I am just giving notice of my joining the club, although I do have one question.

I was admitted to hospital in mid August with chest pain and short breath (turns out that might have just been a bad bacth of peanuts I ate) and after an angiogram the next day I was told that patterns in my ECG meant that Brugada Syndrome was suspected. It was lucky that they kept me in hospital to investigate the Brugada Sydnrome because the next morning the artery in my leg where they did the angiogram burst and I ended up with a massive ball of blood in my groin, not to mention the worst pain I've ever had. I couldn't walk properly for weeks and two months later still have some bruising.

I had the Flecainide Challenge late September which confirmed Brugada Syndrome and then I had to wait to see my electrophysiologist. He has been really conservative from the start and I was somewhat depressed by the thought that he wasn't taking this as seriously as I was. I hated the prospect of going camping, or jetsking or walking and being a place where help, and an external defibrillator, wasn't immediately available.

I met with the electrophysiologist today and his view was that I was low risk. That's not what I understand from the material on the Foundation's website but even if that's right, it low risk of what - death; certainly not as low as the risk that I perceived for myself two months ago! As I had expected, his view was that I should not have an ICD fitted or undertake any further investigations.

I explained that I was struggling with the risks that Brugada Syndrome presented for me and my young family. I explained that I was somewhat depressed about the prospect of dying when it was preventable with an ICD.

I have to say he was great. He accepted my reasoning and agreed to implant a single lead ICD on 6 November 2009. I feel a great weight off my shoulders already. No doubt I will have some issues to face with the ICD but at least I can get back to doing normal things without the morbid fear I have had for the last 2 months.

So, the only question I have so far that doesn't seem have been answered by this forum - I go through metal detectors every single day when I go to court. Should I continue to go through them with an ICD or should walk around and flash some sort of ICD card?
AlexNelson
 
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Re: Question - and thanks

Postby fnmartinez » Mon Oct 19, 2009 3:12 pm

There is no problem to pass through the metal detectors, the only thing is that depending of how sensitive it is calibrated it could detect your ICD or not.

BUT THIS IS REALLY IMPORTANT : If it detects it, show to the security personnel the credential that the hospital (or the ICD manufacturer), will give to you indicating that you have an ICD, and ASK FOR A MANUAL CHECKUP. Because when the arcs indicate the presence of metal in you, security will tried to pass you a manual metal detector, this manual metal detectors have a strong magnetic field that when is moved trough your body, makes that the ICD senses the signals from your heart or not depending of where the detector is. When they moved that manual detector fast over your chest and the ICD receives a confusing signal like that, it could think that you are having a fibrillation, and shocks you.

When I travel the metal detectors of some airports detect my ICD and some not, thats why I usually pass directly (again no risk there), but if it sound I asks immediately for a manual checkup. In some places takes longer to explain the situation, but most of the time there is no big deal. Thats the only precaution with the metal detectors.
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Re: Question - and thanks

Postby Lady » Mon Oct 19, 2009 9:52 pm

Dear Alex,
Glad you're okay. The artery thing sounded frightening.
Do you know what type of Brugada you have? What country do you live in? I'm in the US, and I've not been offered an ICD because I'm low risk.
Best wishes.
Lady
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Re: Question - and thanks

Postby AlexNelson » Mon Oct 19, 2009 10:57 pm

Dear Lady, I had Type 2 Brugada patterns in baseline ECGs and they changed to Type 1 patterns with the Flecainide Challenge. No family history or history of blackouts though. I live in Australia.
AlexNelson
 
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Re: Question - and thanks

Postby mattstapo » Tue Aug 24, 2010 2:24 am

AlexNelson
I believe i have heard your name before!!!
Are you a lawyer in townsville?? I am in townsville also
anyway, i got the ICD on Dec 04 2010 and obviously just found your post!
it would be great to meet someone else that has it!

anyway my email is mattstapo@hotmail.com
contact me sometime if you want!!!

Kind regards
mattstapo
 
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Re: Question - and thanks

Postby mattstapo » Tue Aug 24, 2010 2:26 am

I mean i got the ICD 04 dec 2009, hahaha.
so not long after yourself
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Re: Question - and thanks

Postby BreenG » Tue Aug 15, 2017 12:30 am

I'm located north of Townsville QLd and my ECG have shown up abnormalities, Brugada Like ECG and they are sending me for the Flecainide Challenge

I am a little anxious to say the least,so can anyone that has had the test in Australia confirm what it is like, any details much appreciated. I'm a baby, do not handle needles or testing to well.

Thanking you

Gaye
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Re: Question - and thanks

Postby Chas » Fri Sep 01, 2017 10:02 pm

Hi Gaye and a rather late welcome to the forum if you are still around?

We have had terrible problems with SPAM and new users should in theory be blocked until someone can sort it out so I have not checked the forum for a while. Yuo obviously managed to beet the block so congratulations.

In answer to your question if you have not found out already, the test does require a cannula to be placed in your arm, so one needle I'm afraid. The rest is painless and just involves watching your ECG while slowly infusing the flecainide. You may feel some sensation, but nothing painful, and a doctor should be present throughout to keep a check on everything.

My test used Ajmaline but the principle is the same. and I found it uneventful until I was given a positive diagnoses, but lets hope yours is negative. If not don't panic there are plenty of people living relatively normal lives with BrS. My only advice would be to check out www.brugadadrugs.org and follow their advice on drugs to avoid until you are given the all clear.
Chas
 
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