Getting Second -- or Third or more -- Opinion

Posts from Jan 1 2008 thru Dec 31 2008

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DanL2
Posts: 7
Joined: September 3rd, 2008, 10:40 am
Location: Western South Dakota

Getting Second -- or Third or more -- Opinion

Post by DanL2 » September 3rd, 2008, 12:04 pm

My cardiologist told me I needed an ICD, an announcement he made about 6 weeks or so after my SCD and quadruple bypass. He seemed quite vague as to why; he is more the type to simply announce his decision without taking any questioning from his patients. The EP in his clinic was ready to implant an ICD without any discussion as to make, model, or method; I'm sure he would have simply done a sub-dermal implant without even informing me of the possibility of a sub-pectoral implant. (Thanks to my wife for learning about it, and to you on this board for your advice, I realize that I definitely want a sub-pec implant!) My EF is 57% and there seem to be questions as to whether or not I even have V-tach, or how often or how extensive (sustained? non-sustained?). :? A second cardiologist, who apparently wasn't able to get my complete file, told me I had PVCs only -- no V-tach -- and no way do I need an ICD. :!: Two days later, a second EP -- basing his opinion on my file narrative and notes only, without reference to the test results and other hard data -- says I do need an ICD. He wouldn't even do an EP study (says they're basically worthless); he says my cardiologist noted a run of 12 v-tach beats once. That plus a couple of other issues convinced him that I am in a group that suffers relapses some 40% of the time within the first 2 years of my first incident. But he also said I can resume exercising so long as I don't overdo or really exert myself.

The medical community here is very small. We have one EP (the guy who wanted to install one already). I flew to Denver to visit with the 2d one, and now I'm looking at heading east (a 5-hour drive across the state, or a trip to Mayo in MN perhaps). I'm not sure what my question is; maybe I'm just looking for comments. Any reason I shouldn't keep getting opinions until I'm satisfied that the Dr has the whole story and takes the time to answer my questions?

Sorry about the long post, and thanks -- Dan

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Nutbeem
Posts: 196
Joined: January 16th, 2008, 10:08 pm

Post by Nutbeem » September 3rd, 2008, 12:58 pm

Hey Dan, great questions.

Generally speaking, implanting an ICD is part of the general treatment protocol post SCD. I had SCD, but have no heart issues either structural or electrical, but if I had SCD once, I can have it again, so ICD it is.

The problem living in a more rural community is that you don't have access to docs that do this ALL THE TIME. A second opinion can be a wonderful thing, and if that means trucking across the state, then so be it. You'll be amazed how much better you feel when you deal with people who have lots of experience with situations like yours. You'll feel better about your ICD, and better about living your life in the future.
Rick H
Southern California

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Lazydays
Posts: 566
Joined: August 13th, 2008, 4:09 am
Location: England

Post by Lazydays » September 3rd, 2008, 1:26 pm

Hi Dan & welcome to the forum. Following my one and only episode of VT for which I was 'shocked' out of I had a stent fitted (my second) and told matter of factly that I needed an ICD by one of the cardiologists team. I must admit that I just went along with it really without question. In my experience here it seems having a prolonged chat with a cardiologist is rather a scarce event although that may well be due to my trusting/non questioning nature. Joining this forum has changed all that and I can't wait to 'get at him'. I was never told that a sub pec implant was an option - probably because it takes longer to do. I applaud your decision to ask questions until you are satisfied on the right course of treatment for you but if is was me - I would ere on the side of caution every time. I have not had SCD but the thought of having my own power pack to help me out of a possible reoccurrence is pretty good insurance in my view. I can't believe the distances that some of you guys in the U.S. have to travel for treatment. Hope you get the answers you are looking for. Let us know the outcome.
Gary

Life Can Sometimes Be A Shocking Experience

March 1994 - MI
June 2003 - Stent
July 2008 - VT - Stent & ICD fitted
Dec 2008 - Appropriate shock
Sept 2011 - Ventricular Ablation (failed)
May 2012 - Ventricular Ablation
May 2013 - Ventricular Ablation (failed to induce VT )
June 2014 - Ventricular Ablation
25mg Spirolactone
5mg Bisoprolol
10mg Ramipril
40mg Pravastatin
Warfarin
Disopyramide - 400 mg

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Kat
Posts: 2521
Joined: June 21st, 2006, 5:30 pm
Location: Big City, North Carolina

Post by Kat » September 3rd, 2008, 4:11 pm

You only have one heart. If you have the means, you should not stop until you get all the answers you want. And you should get a copy of your entire medical record. They can not keep it from you.

Good luck
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: http://www.icdsupportgroup.org/board/vi ... 5694#p5694

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Sparkydog
Posts: 471
Joined: May 17th, 2008, 9:59 am
Location: Houston, Texas

Post by Sparkydog » September 3rd, 2008, 6:38 pm

A question I wished I had asked my EP before the ICD is this: Assuming 100 people just like me have my exact condition. How many will have an ICD shock in the course of 5 years. And, out of those people who received the shock, how many will experience an unnecessary one. Quantifying the problem can sometimes help put things into perspective.

Good luck, and you're definitely doing the right thing to get a second and/or third opinion!

Ron

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~guin
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Posts: 2677
Joined: September 7th, 2005, 11:23 pm
Location: California Bay Area

Post by ~guin » September 3rd, 2008, 6:44 pm

While I agree with what everyone has said - I will take a little different approach.

You SURVIVED Sudden Cardian Arrest! Less than 5% survive a SCD. YOU are one of the lucky ones.

It was recommended to you to get an ICD because it WILL save you from SCD and VT. It is an insurance policy - one that will keep you alive. Sounds like the Docs took into account, your SCD, VT and rural living. I know myself I did not survive a SCD, I didn't have time to research whether or not I needed an ICD, I let the Doc make that decision for me, takin ginto account my medical and family history. I then went through denial after the implant, thinking it was over kill and I did not need it, I even went through the depression, but it paced me once and I was happy that I had it, I realized it was my insurance policy and it was there to protect me. I have one almost 10 years and it has paced my VT numerous times. I have never been shocked. I live in a rural area as well, medical 20 minutes away, but my Cardio and EP and hour away. I am glad I have my guardian angel!

Good luck to you, ask all your questions, do all your research, be happy that you have time (?) to research, but how much time? Remember your Doc wouldn't tell you , you needed one unless it was warranted.

Keep us posted. We do care.
~guin

BruceV
Posts: 254
Joined: June 8th, 2008, 9:40 pm
Location: Jacksonville, FL

Post by BruceV » September 3rd, 2008, 8:29 pm

I have to say I agree with Guin. Though it is good to make sure that the doctors are right you don't want to take too much time with this as you may need the ICD's help. I've had my device since April and have had 8 shocks from it. All of them saved my life. The first shock was the day after implant. I too was lucky enough to have survived SCD. I'm glad to be here and glad to have my "insurance policy" on board.

Bruce

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markokc4863
Posts: 674
Joined: July 27th, 2008, 11:06 pm
Location: Oklahoma City, OK
Contact:

Post by markokc4863 » September 3rd, 2008, 8:57 pm

My ICD was implanted for the very same reason Rick explained above.
Mark

Medtronic Virtuoso DR
Sudden Cardiac Death - 5/7/2008 (my wedding anniversary)
ICD Implant - 5/9/2008
First Shock - 6/9/2008

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kathyn2
Posts: 238
Joined: July 27th, 2007, 4:42 pm

Post by kathyn2 » September 3rd, 2008, 9:50 pm

I will come right out and say it. After saying you had a SCD and the doctor notating v tach I would get the icd. I also fought getting one for several years even tho I had had 1 bout of V tach (no scd th). Finally I wasn't feeling well and wore a 24 hour monitor for a few weeks and several rounds of v tach were noted. I had my icd placed a year ago with no zaps and a couple of weeks ago I was zapped for the first time. It only takes 1 time to do you in and an icd gives you a much better chance to make it thru. They can save your life. good luck in whatever you decide.

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