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 ARVD diagnosis 
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Joined: November 7th, 2005, 10:08 pm
Posts: 229
Location: Minnesota
Post ARVD diagnosis
HI,
Anyone have ARVD here? I've had my ICD 3 years, but was just diagnosed with ARVD - probably genetic (my family history suggests this in my case), and the EP recommended having my kids screened. I read the screening info on the John Hopkins website, but since my heart MRI before the ICD and subsequent echocardiograms and heart CT have all been completely normal, how would they know for sure if the kids had it if theirs were normal also?

I have had the arrythmia symptoms for a few years, and then after the shocks a more complicated ECG in the hospital combined with the family history led to my diagnosis, and it seems the kids would have a 50% chance of having it also. I have one son thinking of joining the Marines after high school, and I read that very vigorous exercise can bring on ARVD (or sudden death) if you have that genetic predisposition. Obviously, that is not a good idea for him if he has it! Very confusing diagnosis...
Thanks for any info!
Sue

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Sue B / MN ~ Family history of various cardiac arrhythmias & SCA. Gene mutation of SCN5A gene.
ICD #1 - Metronic Secura, June 2005 with follow-up ablation in July 2005 for AVNRT. Shock storm April 2008.
ICD #2-Medtronic Virtuoso DR w/lead revision (Sprint lead), June 2009.
ICD #3 Medtronic Protecta DR w/lead revision, June 18, 2012. ICD & lead explant due to allergic reaction & infection on July 10, 2012. Opting not to re-implant at this time.
"Whine less, breathe more; Talk less, say more; Hate less, love more; And all good things are yours." ~ Swedish Proverb


April 25th, 2008, 6:56 pm
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Joined: August 26th, 2005, 10:01 pm
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Sorry Sue, I can't help, but I'm sure someone else will be able to.
Good luck,
Eve & Blabbermouth 111

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April 25th, 2008, 10:13 pm
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Joined: October 27th, 2005, 12:12 pm
Posts: 1062
Location: CT
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Hi Sue and welcome. I have Brugada not the same as ARVD but another Sudden Death Syndrome. We do have a couple on the board with ARVD, Bob is one maybe he will chime in...
I dont know too much about ARVD but I do know it is one of the more difficult ones to diagnosis. I would definatly have your kids screened. I see what you are saying about your tests being normal but if it is genetic in your family and one of your kids does have it, they may show things that your tests dont like maybe ef changes or inverted t waves or other changes on their ekgs, holters or stress tests. I can totally understand your fears about your son and the vigorous excercise he would have in the service so I would definatly have him have a full work up. Do you have a family history of sudden death? Have you ever had the genetic testing done? I know they are not able to find the gene loci in everyone with ARVD but they are in some and when they do it makes diagnosing other family members easier.

Sorry I can offer more but maybe Bob will be able to share his thoughts too.


I belong to SADS and they actually have info on the site I just read yesterday about an ARVD family seminar in May... here is the link..
http://www.sads.org/index.php?option=co ... &Itemid=48

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Cyndie


(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)


April 26th, 2008, 2:01 pm
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Joined: August 20th, 2007, 9:06 am
Posts: 91
Location: Michigan
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Sue,

I was dx 3 years ago at the age of 52 with ARVD. Diagnosis can be tricky. I've read of people who've been diagnsoed, then un-diagnosed, then re-diagnosed. Testing of your kids is absolutely mandatory.

I belong to another site that is exclusively for those of us with ARVD. It would be beneficial for you to join as we ARVDers are in a unique situation in many ways. I've only read of one other member here who has ARVD.

I don't know where you live but there is an annual ARVD conference next weekend at JH, which has helped a lot of people in the past.

My e-mail address is ralla52@yahoo.com if you'd like to discuss further.

Bob


April 26th, 2008, 2:03 pm
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Joined: August 20th, 2007, 9:06 am
Posts: 91
Location: Michigan
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Sue,

I was just catching up on the ARVD-site postings and it looked like you have already joined. Welcome there and here. Great people in both places.

Bob


April 26th, 2008, 2:54 pm
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Joined: August 31st, 2008, 6:43 am
Posts: 7
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Hello Sue,

I was diagnosed with having VT. The EP was unable to tell me what was the cause. He could only tell me that the right ventricular was swollen and that was the problem. After many hours of reading and asking many questions it looks to be ARVD. It occurred after working out intensely, twice in a 6 month period. After the first episode the attack went away after 10 minutes and I took it for dehydration. I went back to training hard with no problems until 08-11-08 my life has not been the same. Even after the implant I have not had any type of episodes or problem regarding my heart. This experience is very depressing for me. I am not sure if I can return to my line of work. The doctors have told me they will make a determination this Thursday (09-04-08). I need to pass a DOT exam, but I am not a truck driver. I am crane operator. After reading the current regulations regarding my condition I cannot pass the medical exam with a ICD. This is due to risk of syncope (fainting). I have 5 children and my wife (very supportive) stays home. This experience is an emotional roller coaster. I don't know if this ICD is a blessing or a curse. I am leaning to the latter of the previous sentence. Sorry to ramble on, but this is what this message board is for, right?

Thank you and hoping to hear from you.


September 2nd, 2008, 7:02 am
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Joined: July 6th, 2008, 7:28 pm
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Location: new york, new jersey, washington dc
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Hi Sue,
I don't have ARVD but I live with the same symptoms with my viral-scar-induced idiopathic VT. Honestly I think ARVD might rule out being a Marine from the perspective of the military, but it shouldn't stop him from doing anything he wants that doesn't jeopardize other people. There are cases of people plugging away with ARVD and leading remarkable lives. The most interesting (and worrisome) one is Hayden Roulston, a silver medalist at the Olympics, here is a link: http://www.stuff.co.nz/sundaystartimes/ ... a6444.html
I'm dubious about the Reiki stuff, but I think a young ARVD sufferer equipped with an ICD just in case can do anything they want. The take home message is that a super healthy, conscientous life can keep the symptoms, and the heart degradation away for a long time.
craig

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39 yrs old, idiopathic VT, endo and epi ablations, ICD installed 6/26/08 "just in case"


September 2nd, 2008, 3:48 pm
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Joined: February 9th, 2008, 6:56 pm
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Location: OKlahoma City OK
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Hi Sue,

I have been diagnosed with ARVD and it was exercise induced. I spent 22 years in the military and although I complained during that time that my heart was "acting up" I was not diagnosed until after I retired from service.

My cardiologist ordered the genetic testing - tests were negative for me for the gene so this confirmed the exercised induced diagnosis. Comfirmation of ARVD for me was a lengthy process, approximately 5 years and numerous tests. I was an avid runner but since I have received the ICD I tapered off from the distance running. I still exercise daily but not to the levels I reached prior to the implant.

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September 2nd, 2008, 8:55 pm
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Joined: September 1st, 2008, 5:39 pm
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Post ARVD-Exercise, Genetic Testing and Diagnosis
Lady Hawk,Cojo and C2:

Re exercise: some with ARVD continue to exercise. They may take the position that 'I am going to be in charge of my life'. I believe that these people are in a state of potentially lethal denial. Johns Hopkins, the nation's leading center for ARVD, recommends that ARVD patients limit their exercise to walking, golf and bowling. Conventional wisdom is that vigorous exercise stresses the heart, aggravating our condition.

Having been an exercise junkie, it's been very hard to give it up. However, I refuse to do anything that will hasten the progression of my disease. I at least owe that to my wife and kids.

C2: Concerning the NZ Olympic cyclist Roulston--"The take home message is that a super healthy, conscientous life can keep the symptoms, and the heart degradation away for a long time." I vehemently disagree. This guy is most likely aggravating the disease. ARVD isn't like heart conditions where patients are encouraged to exercise. Time will tell w/young Hayden, and I hope I'm wrong.

As far as genetic testing is concerned, there have been several genes linked to ARVD. Positive testing for any of those genes will confirm ARVD. However, it is my understanding that there other other genes linked to ARVD that have yet to be discovered. Therefor it's possible to have a genetic case of ARVD without testing positive for the known genes.

Cojonudo: good luck tomorrow re the dx. Regarding your ICD--it will probably save your life. When I am particularly 'mad' at mine, I think of the many times it prevented me from dying. I then think about my wife and kids who, most days at least, are glad that I'm still around.

One thing to watch out for is that ARVD is a tricky disease and there are many cardiologists out there who are not familiar with the disease. While it is frequently over-diagnosed, it can be tricky, depending on your situation to accurately diagnose. Worse are those that think they know the disease and don't. My sister's cardiologist told her, "They don't even know if that's a real disease". Another proclaimed her clear of the disease after listening to her heart on a stethoscope. These idiots should lose their licenses.

Make sure you are seeing an EP who has treated patients with ARVD. Johns Hopkins has a protocol for diagnosing ARVD. I strongly suggest you bring it to your appointment with you. Let me know if you can't find it. My cell and e-mail address are below my signature if you'd like to discuss this personally.

Sorry for the rant, but this topic is obviously close to my heart.

Bob
248/298-6109
boballan@live.com


September 3rd, 2008, 12:03 pm
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