Ventricular Tachycardia

• By sliderjmt
• Posted October 12, 2009 at 10:57 am
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Hi Nicole,

I have the same thing VT as they call it. I had to have an ICD put in. But that still did not work my heart was beating like 300bpm. So I went to RI hospital and had a Ablation done,But they only did the inside of the heart not the outside,so Then I went to Mass General and had the both inside and outside done.Well when I went back to the Dr he said I still had 24 episodes,so He said to contact Dr. William Stevenson,at Brigham and Womans Hospital in Boston. He is supposed to be the best in the country according to my Dr. He said everone from around the country goes to him.So I made an appointment with him I go on Oct 29th. If you are interested his phone number is (857) 307-4000 to make a appointment but it may take awhile to get the appointment,I made mine about 2 months ago and not going until Oct 29th. If you want to contact me about this you can call me at 401-603-1672.

Jerry

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• By lyssies13_mom
• Posted October 12, 2009 at 5:25 pm
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thank you so much for your reply. I spoke with my daughters cardiologist just today and started the paperwork to have her seen at Boston's Childrens Hosp. They are supposed to be the best in cardiology. He said she probably wont be seen till November and at that time probably will have another attempt at ablation.

We live in Pgh so to go to Boston it is a 10 hr drive, just wondering how far you have to go to get to see your dr??

Good luck with your appt and please keep me updated!!

God bless,
NICOLE

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• By sliderjmt
• Posted October 12, 2009 at 8:10 pm
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Hi Nicole,

Well I'm a little closer to Boston it only takes me one and a half hours to get there. I live in Warwick, RI. I hope everything goes well for your daughter, believe me I know what she is going through. Please keep me informed and let me know how she is doing o.k.

Jerry

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• By Alexis77
• Posted October 15, 2009 at 9:33 pm
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When you go to your appointment, please have the doctor check her for ARVD (Arrhythmogenic Right Ventricular Dysplasia). It is the cause for 1/5th of all sudden cardiac deaths for people under 35 and the leading cause of sudden cardiac death in teens. Symptoms are VTach/VFib/AFib and syncope/pre-syncope. A lot of times, exercise, or anything that raises the heart rate, is the trigger for these events. It is a genetic disease and you can get genetically screened, but right now we only know 5 of the markers.

This diagnosis often gets missed by the best of the best because it is extremely rare. I had four cardiologists--including two electrophysiologists--miss this diagnosis before I was correctly diagnosed. Johns Hopkins in MD is THE place to go for this. They are the leading researchers in this field. They've only been able to diagnose this for a little over 20 years.

arvd.com is the website for more info.

Alexis

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• By lyssies13_mom
• Posted October 15, 2009 at 9:38 pm
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How do they test for ARVD?

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• By Alexis77
• Posted October 15, 2009 at 9:50 pm
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there are no definitive tests. I mean, even the genetic tests will only say if you're a carrier of the gene. And someone in my family must be a carrier for me to have this, because random mutation is exceptionally rare. But no one else (so far) has had any cardiac symptoms. My brother's test are all negative. My parents are getting tested now.

EKG (they look for 3 specific T waves which will be inverted T in most ARVD cases)
Signal Average EKG
Ultrasound, although that's rather unreliable, because you can't get a good measurement of the size of the right ventricle with an ultrasound
Cardiac MRI to look for fatty cells in and around the muscle of the right ventricle and the size of the right ventricle in general
EP study to see if they can induce VTach and VFib--not always necessary to do this. I opted to skip it since all other tests showed I had ARVD
Holter Test
Event Monitor (she should have one of these if she doesn't already. That will give the docs a lot of info if she has any episodes)
Stress test to see if exercise/rise in heart rate causes arrhythmia

Really, go to ARVD.com and that's the Johns Hopkins site--then go to "diagnosis" and then "Q&A"

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• By lester
• Posted October 21, 2009 at 7:13 pm
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Hi Nicole
I know your probably pretty scared right now. I'm 28 yrs old and was just recently diagnosed V Tack Ventricular Tachycardia. I too had an ablation done which was unsucsessful, I've actually had three of them two were done on the inside of my heart and the third was done on the outside. I've spent quite a bit of time in the hospital to try and keep my arrythmia under control. My heart would beat as fast as 200 beats per minute. I ended up having to have an ICD/pacemaker put in. Now i'm not saying that this is what your daughter has but I was a healthy woman up until I had a little boy. He's now three. So all I can say to you if your not satisfied with your answers keep goind to different doctors. Your not the only one that's scared I wake up ever morning scared and insecure. If you would like to talk more feel free

Sincerly Leslie

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