Diagnosed with Brugada Syndrome

Use this discussion board to address concerns or to find support from others with the disease.

Moderators: mad1dude, Chas, estanis

Re: Diagnosed with Brugada Syndrome

Postby fnmartinez » Mon Feb 22, 2010 4:04 pm

No problems with the computer. I work as a computer performance consultant, and sometimes works in big data centers surrounded by computers, never had a problem.

But be very careful with Ipods or other hard disk small devices, specially the old or the high end models, because they have an internal hard disk. Never put it on your shirt pocket, over your defibrillator (other places are secure). The hard disk emits strong (but very short distance), magnetic pulses, and can affect your ICD...
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Re: Diagnosed with Brugada Syndrome

Postby vininola56 » Tue Feb 23, 2010 1:14 am

Thanks for the info about the computers, that eases my mind and I am pretty careful with my MP3 player.
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Re: Diagnosed with Brugada Syndrome

Postby vininola56 » Wed Jan 26, 2011 5:02 pm

Hello everyone and Happy New Year to you all. A year has passed and I am still in distress with these teeth, The Dentist are afraid to pull, still fighting with my insurance companies to get the extractions done in the Hospital as an out patient. Also decided last year to have Bariatric surgery, that hasn't happened yet, the Doctor that I saw is leary of doing the surgery while the icd is in place. Have not had any shocks since it was implanted. I feel like I am stuck in limbo, I need medical procedures but it's not as easy to get things done as it used to be. I have began to lose weight on my own, well with God's help. I remain positive and encouraged because I know in my heart that things will work out for my good, a little patience can take me a mighty long way. I won't give up. Just out of curiosity, know of anyone that has had sucessful bariatric surgery. Have a blessed day all.
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Re: Diagnosed with Brugada Syndrome

Postby fnmartinez » Thu Jan 27, 2011 4:52 pm

I keep my dentist informed. I had never had an extraction since I was implanted, but I have a root canal done, that needs a bid doses of anesthesia, she used one of the products that is not in the black list of medicines for BS, and everything was ok. Did you show him this place http://www.brugadadrugs.org/?
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Re: Diagnosed with Brugada Syndrome

Postby Lady » Thu Jan 27, 2011 6:52 pm

Vininola,
Good to see you back.
You mentioned God, His way is best. I believe in doing everything naturally. All that surgery does is force us to eat smaller portions. You can do it. Eat healthy, small portions. I like to eat every two hours, even a piece of fruit, or yogurt. Also taking acidophilus and grapefruit seed extract from the healthfood store helps. Hope you don't mind my suggestions. Just trying to offer support. I avoid pop, sweets, white flour in breads. It helps. Drink lots of water, well not so much you float away. Did you know that you can overdo water? Why do we have to be afraid of everything?
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Re: Diagnosed with Brugada Syndrome

Postby vininola56 » Fri Jan 28, 2011 6:03 am

Lady, I appreciate all the advice I can get. I will give it a good try, really don't want to do the surgery.
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Re: Diagnosed with Brugada Syndrome

Postby vininola56 » Wed Mar 30, 2011 3:32 pm

Last year I weighed 290 pounds as of today I weigh 240 pounds, it's coming off slowly but it's coming off. Portion control and counting carbs and walking. Changed my mind about bariatric surgery. Icd is doing well. God is good.
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Re: Diagnosed with Brugada Syndrome

Postby Keit » Wed Mar 30, 2011 5:03 pm

Congratulations! You're doing great and you're a wonderful inspiration!
"Low Risk"-My Experience
http://www.brugada.org/support_group/viewtopic.php?f=2&t=501
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Re: Diagnosed with Brugada Syndrome

Postby Lady » Sat Apr 16, 2011 3:33 pm

Sorry it took so long for me to say how glad I was to hear you have been doing great without the surgery. We should all avoid surgery unless it is absolutely necessary, especially when we have Brg. I gained a lot of weight the past two years because of my injury. Its hard to stay on a diet, but I know that I will feel better, and be able to do things for myself.
Great job!
Lady
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Re: Diagnosed with Brugada Syndrome

Postby Sharon1968 » Thu Dec 29, 2011 3:45 am

Hi lady,
I have been told that I have a pattern of Brugada yet I don't have a definite diagnoses either way to say yes I do have it or no I don't have it! I also live in Ohio as f
You
U do and I would love to chat more about this!
Thanks


> Hi Vininola,
> I know how you feel. I too am the only one in my family. I do not qualify
> for the ICD however. This support group is probably the best support you
> will find. I too live in US. Where are you from? I live in Ohio.
> I thought your question on sitting in front of the p/c is a good one.
> Maybe Chas can add it to the FAQ. We should ask Dr. Br or does anyone know
> that?
> Hang in there. You are not alone!
> Lady
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Re: Diagnosed with Brugada Syndrome

Postby ralph2448 » Mon Jan 30, 2012 5:13 pm

Hi I am new to this and have alot of questions, i'm 55 years old male with no symtoms. The BR. pattern showed up on an ecg when I had surgery on my shoulder last 0ct-11. after recovery from that my reg. Doc sent me to cardio. The first question he had was "has anyone in your family ever died in there sleep"? I said yes my uncle did 20 years ago at age 56. Then they told me there pretty sure I have BRS. I have never fainted and I work consturction all my life. We are waiting for genetic testing results as I write this. My specialist said its up to me about the icd. I have 4 grandkids 1-7 yrs and a wife of 35 years, Im a believer and trust God for my eternity Thru his Son. But I work with power tools and this could take me out of work, and since everyone gets turned down from disability which I would need. I really need opinions on what to do. With no symtoms what should I do as far as the icd? My doc. wants to do a test where they go up the groin to the heart to see if they can make it happen i guess anyone have that test done. Thanks for reading this and appreciate any feed back Best to all of you Ralph
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Re: Diagnosed with Brugada Syndrome

Postby Chas » Mon Jan 30, 2012 8:44 pm

my experience". viewtopic.php?f=2&t=501

I have had the EPS test, where a wire is fed into the heart, on two occasions and while not exactly pleasant, I did not find it too painful or stressful. In recent times however some doctors have questioned the validity of this method of assessing risk. If you do not normally show signs of BrS in your EKG, it is possible that the anaesthetic you were given "uncovered" the BrS EKG.

You are fortunate to be given the choice, most of us have to accept to doctors decision, which way you go depends on what worries you most.

Without an ICD, an episode could be fatal. With an ICD you are almost certainly protected against BrS but you have a risk of complications such as post operative infection, leads moving and needing to be reinserted and inappropriate shocks. An ICD can be sensitive to high electric/magnetic fields produced for example by arc welding equipment, but I have not heard of problems with "standard" power tools. You may not be allowed to drive for 6 months after the operation. You would need to avoid "contact sports where the ICD could be damaged.

To reduce your chances of having an episode you should avoid the medication known to cause an increase risk and also try to avoid developing a fever. See www.brugadadrugs.org for the latest known information. You will find that many doctors have little knowledge of BrS and you will have to be careful in checking anything that they prescribe. For example, drugs used to treat ahrrythmia can make matters worse for suffers from BrS.

You will also need to consider the implications for your family. BrS is a genetic problem that has a 50% chance of being passed on to each child, and one of your parents and one granparent etc would have had the gene defect and could have passed it on to their children. Other members of your family may need screening for the condition. There are no symptoms as such, so just being healthy does not rule out BrS.

I hope that help, but check out the internet and other posts to try and get a balanced view. Some of the reports may have some unfamiliar medical terms, but they can be looked up via google. Please let us know if you find out anything new.
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Re: Diagnosed with Brugada Syndrome

Postby SusanOHara » Fri May 03, 2013 1:46 am

Vininola56 - are you still in the Houston area? I was hoping to ask you about Dr. Cheng. My son was recently diagnosed and I need a doctor who knows what he is talking about. I haven't seen any posts in here from you for a while so I hope everything is okay.
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