Anyone out there have this disease? I just saw my EP doc last night and he is thinking this is what I have. I would love to talk to anyone who knows anything about this disease. I think I am going to need an endocardial biopsy, how is this? I have an ICD so doing a MRI is totally out of the question, just had a TEE done where my doctor said it definitely makes him think this is what I have. I am seeing a heart failure specialist in a couple of weeks, any suggestions on things I need to know or ask. Thanks for any help you can offer!
hey, i am only 19 yrs old and the doc thinks i have RV Dysplasia...so i am going to get an mri done and its either gonna be RV Dysplasia or some other thing but either way he said it is cure able by some electro shock minor intervasive heart surgery.
I am sorry to tell you but ARVD is not curable only manageable. They try to manage it with meds and usually they put an ICD in your shoulder in case of VT. There is a great website out there ARVD.com, with all the info to read up on. An MRI is not the only way to determine if you have ARVD, there are a list of criteria to meet before a diagnosis can be determined. I would ask your doc more questions, sounds like he is forgetting to tell you a few things.
Thanks for posting that website - My grandson, now 23, has had ARVD most of his life and you're right - it is not "curable" but is manageble with meds and he also has had several surgeries over the years. I don't know if he has an ICD but I'm going to ask my dau...
I am sorry to hear about your grandson. If he has ARVD his best defense would be an ICD, considering we don't know when a life threatening VT/VF episode will strike. I would strongly recommend that if he doesn't have one that they seriously look into one. I had one of those life theatening rhythms this summer and was lucky to make it home. I didn't leave the hospital without an ICD, and I didn't want one. I was stubborn and argued with the different doctors that were telling me that I needed it. I am so glad that I agreed to have it, it has already shocked me once. There is a support group for members and family memebers of ARVD if you are interested.
I am currently awaiting my diagnosis of ARVD, I had a biopsy done yesterday. My doctors believe this is what I have but it is a very difficult disease to diagnose. I would be interested in hearing how your grandson was diagnosed. Take care!
Hi i'm 16 and recentley was diagnosed with ARVD, I've been given the decission whether to have and ICD fitted but i've heard a few nasty stories about it. Is it really all that bad? or is it ntohing to worry about?
I don't know where you are all from but Johns Hopkins in Baltimore Md. is a great place to go for any information about ARVD. They have a very informative website also. We have been going to there ARVD research conferences for at least 6 years now.
We lost our 20 year old son Nick in 2001 to a SCA and through autopsy was found he had ARVD. Had no symptoms...
There are a series of tests you need to determine if you have this disease...not one test will do and it is not curable, but treatable and you can live a "normal" or new normal life if you are diagnosed with the disease.
Unfortunately in our situation we never knew with Nick.....
I am so sorry to hear of all these cases of ARVD. My brother and 2 sisters had/have ARVD, which took one of them 22 years ago. The other 2 have had heart transplants and are doing great. My 17 year old son just had an ICD implanted 3 months ago. I would like to go to an ARVD support group with him. Does anyone know of any in the Bay Area in California? Thanks.
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