Anyone ever got their ICD removed?

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mikesmom
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Re: Anyone ever got their ICD removed?

Post by mikesmom » October 26th, 2012, 9:34 pm

Hi... I have had my medtronics icd and pacemaker since June 2012. My last interigation was last week. Paced 7% in the past 3 months. Something about my heart rate going under 60 bpm in the middle of the night on one occassion. Paced it right back up and EP said it was most likley because I was in deep sleep. No events or therapy. I am 51 and wondering why in the world I have this thing. It causes me more stress and anxiety than I have ever had in my life. In other words, I HATE IT! What is really a question for me is why it had to pace at under 60 bpm when I had it implanted because I had an episode of v-tach at 228 bpm. Can any doctor really tell me what my heart is doing? What do I have do ask for? Do I ask my cardio doc. my EP. my GP. I am at a loss here and just thinking I have full coverage nsurance an taking advantage of it.
Medtronic ICD and Pacemaker June 2012
No activity ....No Shocks....so far
Meds: Lipitor, Coreg, Lasix, Aciphex, Vitamin D, Zolpimed.
Supplaments: Aspirin 81, Pottassium, Iron, CoQ10, Milk Tistle

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Jim and Sparky
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Re: Anyone ever got their ICD removed?

Post by Jim and Sparky » October 26th, 2012, 10:10 pm

Mikesmom, perhaps I can take a stab at your questions, because your situation sounds similar to mine. The reason I have an ICD is because of 2 SCA's. That was about 21 months ago. I have had no events since then. The ICD has just become an insurance policy for me. I wish I didn't have it, but also glad that its there in case something happens again.

About a year after the implant I found out that I was being paced up to 60 bpm about 19% of the time. I sort of freaked out at first, thinking that something was really wrong. But my doctors told me not to worry. It probably all occurs when I am asleep. It's probably beneficial for all of us to stay at 60 bpm because adequate circulation is of huge importance to many parts of our bodies. It's maybe a bit ironic, but we take beta blockers, which have a tendency to slow us down, and then our ICD's fight to get our rate back to 60bpm. Anyway, the pacing apparently uses very little battery and probably makes only an insignificant difference in overall battery life. I quit worrying about it long ago because it would seem, at least for me, that the little device is working exactly as programmed and for my ultimate benefit.

At least, that's how I see it.
MI 1/21/11; SCA's 2/3/11 and 2/4/11
I have a Boston Scientific Teligen ICD and a Boston Scientific Promus stent,
I guess my cardiologist is sort of a BS kind of guy.

Two rules to live by:
1) Don't sweat the small stuff!
2) It's all small stuff!


My Intro is on this page: http://www.icdsupportgroup.org/board/vi ... 917#p74917

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LongCutie
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Re: Anyone ever got their ICD removed?

Post by LongCutie » October 27th, 2012, 10:29 am

flyingcamel wrote: Medtronic does not treat people. We can't!
Nonsense. Providing patients with their own information is in no way "treating" them, just as a lab providing lab results is not "treating" someone. I cannot change my device settings or my therapy with that information, but I can make informed decisions about my own health.

That's merely a clever little backwards way to justify putting doctors between the patient and their own information, and I'm not buying that argument.
~A~

LQT2
Medtronic Secura DR implanted November 17, 2010

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mrag
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Re: Anyone ever got their ICD removed?

Post by mrag » October 27th, 2012, 12:35 pm

I'm fairly certain this will go right over the heads of the people that are going to vote for the wrong guy next week, but since I'm just sitting here waiting for the end of the world (aka Hurricane Sandy), an interesting connection of sorts just popped into my normally vacuous mind. If you want to try and anticipate the next part and if you can keep up with my racing thought processes, see this thread now and begin thinking. Otherwise . . .

So I now go to a coumadin lab on a monthly basis. They (CCP for Cardiology Consultants of Philadelphia) take some blood, give me a number and tell me to 1) do nothing or 2) take more coumadin or 3) take less coumadin. They (CCP) also tell me to come back in 4 weeks and we repeat the process. They (CCP) now allege they are losing money on this lab so they are closing it in a month. What this "losing money" bit really means is SOMEONE is not reimbursing them for more than what they feel it costs them. Now we can only guess who that "someone" is, but it is 1) Medicare (aka 'Government,' 2) insurance companies or 3) both of them. Understand in America at least, our medical system is controlled by insurance. A doctor or a hospital can charge whatever they want, BUT in reality, unless they agree to accept what an "insurance company" will actually pay them, they are not going to have any "customers." Right now, the US Government program Medicare is by far our largest "insurance company" and can demand and get huge and significant price concessions. Thus the $37,000 hospital charge I had for my car accident "only" required the insurance company to really pay 'only' $5,000. If you are following that, you can easily see how Paul Ryan's plan to basically break Medicare's influence and instead offer vouchers so people can go to many different for profit insurance companies....

I digress. So my "new" coumadin testing will be done by ....me! Some company (ALERE) is going to send me a device and a nail. Each month I hammer the nail into a finger, put some blood on a strip and stick it into their machine. I then call the company (ALERE) and give them the INR number. If it is out of range, CCP (note CCP, the doctors, not ALERE) will call me to adjust my dosing needs. The process then continues.

So, in this long winded semi ROBO Pop type fable, we now are ready to hit the high spot. How is this coumadin testing device any different than my ICD and the testing any different than an interrogation and while ALERE makes the device, I still have to talk to CCP (the cardiologists)? And for Heaven's sake, how can I get to see the software that measures my INR level and who are they selling my data to and what do they plan to do with that?
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

mikesmom
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Joined: June 29th, 2012, 8:26 pm
Location: Chicago, IL

Re: Anyone ever got their ICD removed?

Post by mikesmom » October 27th, 2012, 11:52 pm

Thank you Jim and Sparky! That does make me feel better!
Medtronic ICD and Pacemaker June 2012
No activity ....No Shocks....so far
Meds: Lipitor, Coreg, Lasix, Aciphex, Vitamin D, Zolpimed.
Supplaments: Aspirin 81, Pottassium, Iron, CoQ10, Milk Tistle

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mykidsmom
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Re: Anyone ever got their ICD removed?

Post by mykidsmom » October 28th, 2012, 10:59 am

I got mine removed last week.....BUT replaced the same day :mutt: :mutt: :mutt: :mutt: :mutt:


doesnt count right lol..
I think.....Therefore I am.!!!!!

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smc0827
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Re: Anyone ever got their ICD removed?

Post by smc0827 » November 14th, 2012, 8:41 pm

I have also had my device removed, due to infection. My Dr. once said that they usually don't like to remove devices once you have one. But he was also supportive of my decision not to get another one at this time.

I am of the opinion that one should be able to make that choice if the device is hurting you more than it is helping you - whether that be for physical or mental health reasons. But only after discussing all the options with your Dr. and making the decision together based on your particular health situation. If it is just the appearance of or discomfort with the placement of the ICD, that can be changed. I would certainly talk to your Dr. about how you are feeling. And I agree with Mark about finding a new Dr. if yours isn't supporting you. I did that and totally love the one I have now.
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

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jbie2
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Re: Anyone ever got their ICD removed?

Post by jbie2 » February 15th, 2015, 12:19 pm

Hey everyone,

Its been a while since I last posted..just felt like giving an update to everyone who replied to this thread.

I have had my ICD for almost 5 years now!!!

This past year has been great, I finally got back my rhythm and am able to live like those pre-ICD days. I don't think about my ICD as much but I admit it still lingers in the back of my mind every now and then.

It was not an easy road to get to this point. The first year of having my ICD, my Brugada Syndrome was really acting up like a BITCH..Any kind of stimulant that got my adrenals pumping made my heart race really fast. From watching a movie, playing a card game, to even the sound of the door suddenly slamming!!! I would have to close my eyes and take deep breathes for at least 30 mins. The first year I was pretty much a zombie, lost contact with lots of friends and family..

It took a few years, but I took baby steps and finally was able to gain back my health this past year although it could still be better but can't complain.

So far no shocks, guess I'm pretty damn lucky ahh??

Even so, when it is time to change the ICD, I'm sure I will just completely remove it. I still hate the fact doctors who manipulate this device have such a control over my health and body, it annoys the hell out of me. I don't think I can ever get over that part.
James


Trying to learn as much as I can about ICDs...

David882
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Re: Anyone ever got their ICD removed?

Post by David882 » February 16th, 2015, 8:43 pm

BKK wrote:
LongCutie wrote:Now that I've found out that the real purpose of my ICD (in the device company's eyes) is to "harvest" data in order to pimp it out, ...
Really? You "know" this? You have evidence to back up this statement?

Brian
There is a fair amount of evidence to suggest that the companies that make and sell these implants do indeed collect data on us as individuals and as a group. Here are two links that will provide you some basic info about data collection and medical implants.

http://www.wsj.com/articles/SB100014240 ... 0874744076

http://spectrum.ieee.org/riskfactor/bio ... evice-data

The manufacturers can do that because raw data from an implanted device is not considered to be medical record information under the 1996 Health Insurance Portability and Accountability Act (HIPAA) which gives a patient the right to access their medical information held by their healthcare provider.

....... It is just business and we the implanted are not the customers. Doctors and hospitals, and insurance companies are the cash customers.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

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freckles1880
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Re: Anyone ever got their ICD removed?

Post by freckles1880 » February 17th, 2015, 8:40 am

I am not sure where this is going. For the most part we have the ICD in our bodies to help us overcome a SD type of event. Many also have them so the pacemaker side can assist the heart in staying in a good HB. Yes, the data is there and is used. I would hope that it is used to help the manufactures improve on what they can do for the heart and body. I won't say that there may have been a few implants for other reasons but I really believe most of us have them for the right reason. I do not believe that my personal information in a way that anyone can identify who I am and what I am going through.

We can play the game of conspiracies all we want but these little devices have saved many more lives than not. I guess it could be like CPR, there are times it may not be successful, but tell that to the person who is alive because of it.

If someone does not want their ICD and they understand what it is in their chest for, then they should discuss that with the doctors and get it removed. I only know of one person on here who most likely needed their ICD and it did not do the job for her. Between the doctors and her condition it became a medical problem not a solution.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

David882
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Re: Anyone ever got their ICD removed?

Post by David882 » February 18th, 2015, 9:52 pm

I want to know what data is collect, how it is used, and who get to see the data...
That is not an argument against ICDs or a conspiracy.

I would have a hard time making the argument that one should not get an ICD. So can we set that straw man description of my view aside.

However, it is not conspiracy to state what the companies themselves have stated that they do, which is collect the data including a host of personal data;

http://www.fiercebiotechit.com/story/re ... 2014-02-10
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

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freckles1880
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Re: Anyone ever got their ICD removed?

Post by freckles1880 » February 19th, 2015, 8:48 am

David882 wrote:I want to know what data is collect, how it is used, and who get to see the data...
That is not an argument against ICDs or a conspiracy.

I would have a hard time making the argument that one should not get an ICD. So can we set that straw man description of my view aside.

However, it is not conspiracy to state what the companies themselves have stated that they do, which is collect the data including a host of personal data;

http://www.fiercebiotechit.com/story/re ... 2014-02-10
I don't doubt your concerns and there are many who do agree with you. I guess I just don't have the fears that there is information about my ICD records that the hackers may have gotten will actually do them any good.
Here is a site you may want to look at who share some of your views. http://icdusergroup.blogspot.com/ Hugo has actually gone to Washington and pleaded the case that we have a right to all of our information. That would not stop the hackers though.


wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

David882
Posts: 882
Joined: July 12th, 2014, 8:58 pm
Location: 49 06' 42.42" N 113 49' 52.52" W

Re: Anyone ever got their ICD removed?

Post by David882 » March 5th, 2015, 10:31 pm

Freckles1880:

I would like to know what data is collected and who has access to the data.
As well when the makers of ICDs are "hacked" I would like to be informed if any of my personal information was compromised.
Any bank or credit card company which has a data breach has to tell me if my data has been compromised.
It does appear to me, based on what has been made public, that ICD makers have all the data one needs to steal a persons identity.

i would also like the raw data as a download to do analysis on but that does not appear likely.

Some folks have a level of confidence in large corporations managing their personal data with integrity and respect.
I just don't have that level of confidence in the nature of corporations which can profit from selling my data.

I think to some degree this lack of insight adds to my PTSD because it is an area that feels uncontrolled. So perhaps it is just my personal wackiness that is the problem. It can be difficult to filter out my feeling...being human is not easy.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

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