ICD implanted

I was wondering if anyone else has had a ICD implanted? And their experience... I was told in March I'm "suspiscious" of having Long QT Syndrome, once my 2 year old was confirmed with it. They did the genetic test, I did come back positive for QT Type 2. From there we went and had radio frequency abilation done. I went into v-tach on my own a few times during it, so they scheduled for my ICD to be implanted. We went with Medtronic. And 2 weeks ago I had it implanted, already had to "fix a lead" once, that same lead they fixed isn't working to it's full potential now, they're debating going back in AGAIN. It seems like every time I get the glue / stitches out from the previous surgery, I'm right back in. I'm 26 years old, and heal fast, that I atleast have going for me. But I was wondering if anyone else has had a ICD implanted with these "issues" . This will be surgery number 3 in 3 weeks for this ICD. I'm loosing faith in Medtronic's device here. It's mainly my defib. lead, for what ever reason, it keeps popping out. Last friday when they put it back in,they tested it, it was fine. Then saturday morning before I could leave the hospital, it was tested again, and no longer fine. AHHHHHH the frustration.
So please share any surgery related stories, to let me know I'm not alone.

By ICDMom
Posted November 9, 2007 at 10:46 am
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Hi KeirasMom, You are not alone!!! I have an ICD as do my 18 year old daughter and my 8 year old son. My daughters was implanted in 12/04 and my sons in Jan 05. We have had a lead fracture in my sons lead last Jan and he had a pretty extensive surgery (his is in his abdomen and they decided to attach it to the outside of his heart this time) he is so active! My daughter has been in 2 times for a revision and is going in next week again because she has a lead fracture in one of the medtronic recalled leads. The two times she went in before wasnt that her lead was popping out but that the actual ICD was poking into her arm pit and causing a lot of pain, they revised it once and put it under the muscle but it just moved again, the next time she had it put under the muscle and secured down and was finally pain free and now here we go again back in! Uugh! We understand your frustration, it may be the way the doctor is doing it causing the trouble. Good luck and I hope they can get it right for you!

By junimead
Posted December 24, 2007 at 1:51 am
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I hope all goes well for you! I just had my ICD put in a little over a month ago but it's a Guidant. I know it's been a while since you wrote this so I hope you are having better luck. My device hasn't even been checked since I left the hospital so I hope I'm not having any lead problems!

By Noreen
Posted March 13, 2008 at 9:56 pm
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Hello
I had an AICD implanted in 10/2007
Post implant I developed multiple pulmonary embolism and I am now on coumadin. My defib. has gone off a total of 9 x's. I went into ventricular storm....I am now stable on amiodarone and toprol xl *high dose since 12/07
Just returned to work 2d / week
It is so scary
Sometimes I have nightmare the ICD is going off
To look at me you'd never guess there was anything wrong . My heart rate goes past 300 BPM. If anyone else has this please write. Idiopathic Ventricular Tachycardia

By lover_of_tinkerbell
Posted April 15, 2008 at 6:45 pm
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hey,
i had a icd implanted several years ago and i have had no problems with my defib. i talked to my cardiologist when i heard that a lead was getting recalled and he was saying that he has had no problems with the ones he has put in patients. but it's not metronics that messes up on the defib.s it's the dr and how well they put in the defib. and how careful they are when they implant it. if u want to talk more just message me...
Tracy

By oabraham123
Posted April 16, 2008 at 3:39 am
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Well I haven't had any lead problems, but I do have an ICD for 10 years now. I changed it only 1 time for battery purposes. I'm 27 and have a mix of ARVD and VT so I know what your going through. I hope they get it right this time and you can move on and try to forget it's even there. good luck

By mah_corsi
Posted April 17, 2008 at 5:55 pm
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I have an ICD implanted but never had problem even took him sometimes clash. I also have long QT. Put the DCI has little more than a year. My is the ST JUDE MEDICAL. I hope I can help with some information

By junimead
Posted April 18, 2008 at 5:10 pm
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Hi there. I have an ICD (Guidant) that I had placed in November of last year. I'm wondering what your activity level is simply because my doc's were so concerned with mine after the surgery. I have a 2 year old so they were worried I'd "pop a lead" as they said by lifting with my left arm. I was fortunate enough to have help at home so I didn't have to lift him for the 3 months they said and actually have kinda retrained him and myself to limit activity. I'm 33 by the way and have the ICD because I was diagnosed with Brugada Syndrome by EP, and I also have Dilated Cardiomyopathy that they think was caused by a virus. I had an ejection fraction of only 40 also so the ICD was most likely going to be placed anyway. Anyway, best of luck to you and I hope you are able to get the problem fixed!!

By lester
Posted October 4, 2009 at 12:00 am
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Hi there.I have a ICD put in me back March 2009 and in June I had what they call a storm .
This is when my life changed for ever I got 66 shocks in the next 4 days, is there anyone that has had anything like this, please get back to me.

Lester

By sliderjmt
Posted October 4, 2009 at 11:12 am
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Hi,

I had a ICD put in in July of this year and it is also a Medtronic. It's not the device you had put in it's the Dr that put it in, why you are having so many problems with it. I have had no problem with it,but it does take a while to get used to it. I had it put in because I was having alot of VT's) Ventricular Tachcardio. There were very bad even after I had the ICD put in I was still having them(I even got shocked 3 times after I had the ICD put in. So then after that I have had 2 Ablations so far and the last time I went to the Dr he said I still have had 24 episodes.So now I made a appt in Boston to see a Dr, named Dr William Stevenson who is supposed to be the best.He is at Brighnam and Womans hospital in Boston.

Jerry

By lester
Posted October 27, 2009 at 8:28 pm
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Hi There
I can totally understand. I found out I had heart problems in april. I had an ablation in which I was Awake for it was the worst. That didn't work so they decieded that a pacemaker /defib would be necessary. So I went home was finally coming around then i kept going into v-tack and within 2-3 days i recieved 66 shocks. Thank god I didn't remember them all. I remember enough to know that i really don't ever want one again. So I feel for ya. I've been in and out of the hospital it's been horrible. My friend always says to me that god will only give you what you can handle, I don't think i can handle anymore

By lester
Posted October 27, 2009 at 8:38 pm
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Noreen
Hi my name is Leslie and i can totally relate. All my problems started three years ago when I had my beautiful son. I ended up having a pulmonary embolism on his first b-day. Things have just got worst since. I have a pacemaker/defib in now. I also had what they call a storm except it shocked me 66 times. Thank god i don't remember it all, but I do know that my family will never forget. So I completely understand. People say it takes time. Honiestly it's always in the back of my head. I'm just waiting for that horrible thing that I know saves my life.
I hope this helps you in any way. Your not alone.

By lester
Posted October 27, 2009 at 8:46 pm
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Hey
My name is Leslie and i just recently had my ICD put in. I think I would have more of a positive attitude towards this thing if I didn't recieve 66 shocks in 2-3 days. So I definetely need some positive news or stories. Because sometimes I just don't think i can get through this.
Some advice please.

By mamayama
Posted October 28, 2009 at 11:22 am
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You can get through this-modern medicine is making great strides every day. They didn't even do VT ablations 2 or 3 years ago--
Don't give up hope you will feel better soon. A storm is hard--I can't believe you had to go through that. I get freaked out by ONE shock.
I have to take out the recalled lead because it can lead to VT storm my doc said, and I don't really think I can take it. I would probably blow my brains out.
You must be a strong person!
Marcella

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