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Ventricular Fibrillation

Tammy1
  • By Tammy1
  • Posted November 11, 2008 at 11:25 pm · 15 replies
  • In Surviving SCA
  • Shared with the public
0 Recommendations

OK, I don't know what to do or what to think. I had a 6 week follow up with my Cardiologist due to starting Sotalol. My device went off last week and with all of my other symptoms I wasn't too concerned.
He took me off of the Sotalol, started Amiodarone which I will start Thursday. If that doesn't work, I will be in his office every 3-4 weeks for monitoring and blood work, then he will recommend a heart transplant! I am only 38 and I thought I was healthy until this *$%#@ thing hit me last year!!
I have called several of my friends who are nurses asking for excellent Dr's. The one I want to go to is in Canada and my insurance will not cover going out of the country. His office checked, it was worth a try!
So, my question... Does anyone know a fantastic cardiologist who specializes in electrophysiology?

Explore topics in this discussion:

Arrhythmia Heart transplant Surgery Angina Pacemaker Lopressor Cardiomyopathy

15 replies

Johnie

Is your heart otherwise healthy, Tammy? What I mean to say is -- Have they been able to determine what caused your SCA? Or is it a case where you have had two SCAs and your doctor cannot figure out why, and the medicine is not seeming to fix the problem? So, you have an electrical problem of the heart with unknown cause? If this is the case, that would probably narrow the search for a specialist. Or, if you know there is an issue with your heart (cardiomyopathy, for example) -- then you would follow that path for a new doctor. Can you give us some idea?

Maridee

We live in Arizona and when my husband suffered his SCA in Feb. 07, he too had no known reason. That was my first exposure to electrophysiologists. There is an excellent group of them in the Scottsdale, AZ area. Arizona Arrhythmia Consultants, 602-234-2800. www.azrhythm.com.

My husband saw quite a few of the group and Dr. Riggio implanted his ICD. Good luck! It sounds like a lot of people depend on you. Take care of yourself first and foremost.

Maridee

Tammy1

Johnie,
There is no diagnosis except V-Fib and V-Tach. They do not know why I had SCA other than V-Fib. You are correct, the medication isn't controlling anything. I know a search for a specialist is limited that is why an electrophysiologist is recommended over other 'general' cardiologists. They go in depth since my condition has nothing to do with the vascular issue like angina or any other type of blockage forming disease.

Maridee, I will call and talk with someone!
Thank you very much!

Tammy

Tammy1

Hi! Thought I would follow up on my scared post last month. (sorry about that by the way, really am! I am more level headed then that!) My Dr agreed to do an EP study and a few other tests, Epi and Procainamide pushes to rule out Brugada, Long QT and EP & Cardiac CT Scan for ARVD for sure. Went in yesterday morning, home this afternoon and diagnosis: Long QT type 3 and ejection fraction is 60%. We are looking at Genetic testing to be for sure.
The Sotalol I was on aggravated the situation and with increasing meds got even worse! So, changed meds and will wait and see. I have been on Lopressor.
We are going to see what Heather's implanted recorder shows at her next appt. in Feb. to schedule her EP study, if we don't go before.
Will keep you updated.

costello

Hi, my name is Pete and I had the same problem, and was sent to the University of Penn to see a specialist in September. They tried to do an ablation at that time, but due to all the drugs I was on (10) (3 different doctors prescribing something different) nothing happened. However at the beginning of Nov my pacemaker went off 6 times and I was put in ICU. They decided to send me back to UofP for another try. This time they apparently found 39 areas to be ablated. I have done follow ups with my doctors, and stopped more medications, and so far I feel great, and EKG looks great also. Go online to find a specialist that is close by or ask a good doctor to recommend one. There are alot of things to look at before a heart transplant, even a second voice is necessary (I had three). Take care and keep the faith

GirlfromNapa

Tammy - I am glad they are finally narrowing down your diagnosis. I am expected to be positive for LQTS type 3 after my SCA (x7) following runs of VT (and Torsades) which turned into VFib. My resting EKG had been abnormal since 2002, when the prolonged QT was first noted. I had LQTS ruled-out back then when they did an EP study w/ Epi (they were unable to induce VT or VFib).

Those of us with type 3 go tend to go into our arrthymias while sleeping, so I am very glad they were able to make your diagnosis. This shows the improvements made in patient care due to the genetic testing we are all under going .. the linking of common symptoms and triggers to certain types of EP problems.

I hope you are happy with your new doctor .. it sounds like you are on the right path. Please check out the various webiste dealing with LQTS for more information ... I am amazed how much is out there and how much I can take to the doctor so I can stay active in my own treatment. Keep on keeping on ...
Luv, ~D~

Tammy1

Pete, the heart transplant issue is on the back burner for now. Hopefully forever if the diagnosis is right. I am also not a candidate for ablation.
Dianne, yes I really like my cardiologist/electrophysiologist. He is wonderful! My EKG's have been 'normal' all these years and I have had many diagnosis over the last 12 years. I really don't think they were actually looking at them to tell you the truth, that is my guess. I'm in the process of getting all of the EKG copies together for this cardiologist to review. I must have had this all along since it took him almost no time to diagnose the condition. I think the diagnostic process also has to do with Dr's experience and knowledge. We have fired at least 5 Cardiologists over the years. Good luck with your testing, please let me know what they find out. How are you doing now?

bingo

I have a wonderful cardiologist here in Columbia,
South Carolina. He is also an eletrophysologist. His
name is John T. Beard. He is as the South Carolina
Heart Center in Columbia. You can contact them at
(803) 255-2747 or 1-800-714-3278.
I wish you all the best. May God Bless you this
Holiday Season.

bingo

scopeland75

Tammy,
I also had SCA on March, 2008. I was a healthy, 32 year old before all this happened, so I know what you mean....I also have an ICD that was implanted while in the hospital for my 12 day stay. My ICD has never gone off, thank goodness! But, I do have an amazing team of electrophysiologists that I saw in the hospital and still see for checkups. It is called West Coast Arrythmia Center in Tampa, Florida. I highly recommend any of the doctors there, but I see Dr. Yamamura. I also have LQTS, yet I have not had the genetic testing done yet, but would like to. Best wishes with everything!

sgriggs89

I'm now 3 months out of the hospital after getting an ICD after a near-fatal ventricular febrillation event in early March. My cardiologist was actually an electrical engineer prior to studying the electrophysiology of the heart. He is awesome, and practices out The Heart Center in Huntsville, Alabama - The Rocket City! He is young, but extremely gifted. I highly recommend him.

runner2002

A good choice would be Dr. Mark Shoenfeld in New Haven CT. He is a wonderful Dr. and well-respected by his peers. He practices at Arrhythmia Center of CT.

maureengraz

My husband sees an excellent electrophysiologist at the NYU Medical Center.
Dr. Neil Bernstein
Rivergate 2, Second Floor
403 E 34th Street
New York, NY 10016
212-263-3600
He has an excellent bedside manner and extremely knowledgable

costello

Hi Tammy, this is Pete again, my last firing of my ICD was on Feb 17, and I passed out at the Drs. office. After staying in he hospital for 12 days for re-evaluation of my medication and talking to a Dr. Alfred Moss, in upstate NY they changed my meds again.... no anti-depressents, darn, and put me on Nadolol, and watch any anti-acid drugs as they also cause problems (learned the hard way). You'll be fine, as my Drs say, you'll live longer than us with your ICD, that what it's there for.

Tammy1

Thank you all for your support! You are all strong, wonderful and encouraging. Going through this is not easy and each of you make it easier knowing there are people living great lives with this. You are all terrific!
I really like my cardiologist I have now, knowledgeable and personable! Takes time with my family and myself to make sure we understand everything. (even though he did get on to me for not telling him I am an invasive cardiology nurse of 17 years!) I have a lot of arrhythmias daily and my pacemaker is set on their 'long QT protocol'. The medication was aggravating the condition making my symptoms appear to be ARVD, even on the EKG's. I am getting stronger daily!
The sad thing is, all 3 of my biological children are being tested and it looks as if 2 of them have this. my oldest is in the Army, was injured and going in for surgery. They put off his surgery and are doing a cardiac workup on him. the Dr told he & his wife yesterday they are sure they will find something when they test him. He never told anyone he was passing out or blacking out but told the anesthesiologist at pre-op. So with that and my history..I am just glad they are being cautious and taking this serious. We are just praying he will be fine!

fireryan

Tammy,

Any doctor you choose, I recommend googling their name. My doc is well published and did an "impossible" ablation on me with great success.
Dr. Vivek Reddy
He is a Harvard grad, and worked in Mass General, and University of Miami, and now is moving to Mt. Siani in New York City.
I looked around. He is one of the Best period. I flew to Boston from Miami to see him. It was the best trip I ever made.
Any one you choose, look them up. Remember that EP is a relatively new and fast changing field.

Dr. Andrea Natale is also a great doctor as well in Texas.

God Bless!!

RyaN

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