12 ablations, VTs and psychological issues

Hi,

I have VT issues since 11 years (I am 43 now), had 12 ablations throughout this time (including open heart cryo ablation, alcohol ablation, thorocotomy, and the rest were RF ablations).

I have a bi-vi ICD and have been shocked about 30 times since 2003.  My situation is still not under control and I am currently in the hospital to be loaded on Amiodarone in the hope that this will suppress the VTs.  My VTs are usually in the 130-260 beat range.

I have very much lost my will to continue my life.  Since years it has been a struggle for me to deal with the shocks from the ICD.  Having a fast VT run and knowing that the shock will come is like being in the zone between life and death.  I can handle to be dead and I can most certainly handle to be alive but being stuck in the zone between slowly eats my sanity away.

Does anyone else feels so drained by their VTs/shocks?  How do other people handle it?

Bernd

[Momto3]

Bernd,

Hello and welcome.  

I do not have a history like yours, but wanted you to know others care.  Is it possible to have the rate adjusted up on the ICD?  Were the ablations effective for any of the foci?  I'm so sorry you are dealing with such a difficult situation.  Have you been to one of the major heart centers?  

I've had 2 ablations and while they were not too bad, 12 is altogether different.  Have you had any relief?  I truly hope the amiodarone helps so you can move forward without having to worry about the firing of the ICD.  Please let us know how you're doing.

connie

[bernd001]

Thank you so much for your warm welcome.

The rate for my ICD is Level 1 = 190 beats (30 seconds wait, 4 x ATP, then shock) and for Level 2 = 240 beats = immediate shock.  It is therefore already set quite high since I tolerate the VTs without passing out.

It looks like some of the ablations provided relief for up to 2 years, the focus was assumed to be deep in the middle of the septum which was frozen with the open heart surgery 2 weeks ago and I hope that once the heart heals and the final scar tissue forms that the pathways will be mostly gone.  But it seems that whenever one spot is ablated, another pathway starts (always in the same area).

I had my procedures done at UAB, Wake Forest Medical Center, as well as Harvard (Brigham and Women's).

Thank you for caring.

Bernd

[Brooke_38]

I'm sorry that you have had to go through, and continue to go through. I certainly feel your frustration. Although I have not been through as many procedures as you and cannot even imagine living in the "zone" as you call it between life and death. Like you, it seems that after my ablation procedures, it is usually weeks before another foci decides to start trouble. I do hope that your most recent procedure is the one that works for you!

Who was your EP at the BWH? I have been in there for 3 of my 5 procedures.

[bernd001]

Thank you for your kind understanding.

My EP at BWH was Usha Tedrow.  She was the lead on the alcohol ablation, one RF ablation and my open heart cryo ablation with Dr. Shekar as surgeon.  I went up there because it was highly recommended. Unfortunately Dr. Stevenson was on vacation when I was there.

Bernd

[mabebesc]

Hi,
I just wanted to say that you've come to the right place for support. There are so many wonderful people on this forum who truly care and understand. If you need to "talk" , we're here to listen.
Betty

[bernd001]

Thank you so much for saying that.  I am really down to the end of my rope.  Reading some of the other threads here already helped me and showed me how much the mind can turn a situation worse.  I am trying to stay calm but it is extremely hard to so considering the facts of my medical history.

I do take Clonazepam to calm me down but it just makes me drowsy and sleepy.

What I need is to see the light of day again and to feel that my life can be normal again.  Believe me, I am trying so very hard to stay positive but it seems that whenever I think that I have seen the worst, another heart issue twist comes up.

Thanks

Bernd

[Brooke_38]

That is too bad that you weren't able to see Dr Stevenson. After my 2nd failed ablation, my cardiologist referred me to him. Being a nurse and having inside connections helped as well. Everyone told me that if I had to wait, I should wait for as long as I could to see him. He is the EP guru of BWH. I have been told that if he can't find something in the EP Lab, nobody will. He is baffled by my recurring problems.

I do sincerely hope that there are better days ahead for you!

[Momto3]

We're here for you and will help you through this hurdle.  Your situation is a difficult one, but with faith, good doctors and us, you're in good hands.

I've heard wonderful things about BWH and UAB, and while I live in North Carolina, I'm not really familiar with their program.  I had my procedures in Cleveland, but not at the CCF.  I do have a cardio at CCF, but the ablations were done at a different hospital.

Your settings are high, and I'm hoping the combination of your most recent procedure and the amiodorone will be your ticket to better days.  Hang in there!  We don't have all the answers, but we do understand and we can help support you while you're dealing with setbacks.

Take care

[wmac]

I have a couple of questions for you I hope you dont mind.
First off was your VT nsvt in the begining or has it always been VT? (meaning under thirty seconds nonsustained vt).
Was your problem always this bad from the begining or did it start after the first, second or third ablation?
Do you have any other underlying heart conditions?
Why do you have a ICD? Is it because your VT is always longer than 30 seconds? Or do you have a low EF? Sorry I just keep asking questions.
My prayers are with you and I turely feel for you I know that I have a hard time with my nsvt and mentally im about to loose it.
God bless and we all will be praying for you.
Take care

[lagoya]

wow i cant believe 12 ablations ,,u are a brave man and i am sorry to read things are difficult for u at the moment i am only a baby with 1 ablation but sometime in the future i have been told i will need another as i am still haveing problems alltough mostly in the atria ------
i hope things settle for u ,,u really deserve a break
prayers sent to u

[bernd001]

Hi,

I don't mind your questions at all.  Actually, I am glad you asked and I can write about them.

My very first VTs 11 years ago were about 160 and lasted for 15 minutes or so.  I never had any short runs before it started.  One lasted for over an hour and I was cardioverted at the hospital.

After my first ablation I had tons of PVCs but over a period of month things got quiet.  However, 2 years later it came back without much of a warning at a heart rate of 300.  I hoped to pass out because I felt that I was suffocating to death.  It lasted for about 2 minutes.  This is when I got my 2nd ablation and shortly after my first ICD.

Ever since then it has been spiraling down and the time between ablations has been shorter.  For about 3 years my VTs were in the tolerable 130 range but since May of these years I am back in the 200 range which requires the shocks from the ICD.

My other heart issues are bradycardia, a cardiomyopathia with EF of about 35-40%, and light congestive heart failure.

Thank you for asking and your wishes and prayers.  Best of luck to you as well.

Bernd

[wmac]

That is very intresting to me. That you bradycardia... Because whenever I get my nsvt is when im relaxing and sitting and my heart rate is slower. The beta I tried made my nsvt worse. I read somewhere that some people at slower heart rates they have an extra pacemaker in the ventricular part of there heart and when the heart rate is slow this kicks in. I asked my cardio that and she said yes it possible. I will look for that article again. thanks and good luck
take care
wmac

[ireneo]

I do hope the Amiodarone works for you as well as it did for my Dad. A couple years ago he was having a terrible time. He went through 4 heart attacks and had significant damage. The docs kept trying this med and that but he wasn't very good about taking them. Complained about side effects. His ICD kept firing off, sometimes as often as 3 times a week. The docs knew he needed help quickly. At that stage they determined he was in end stage heart failure and would only live a short time.

One day he went to the hospital for his ICD check, everything was working well, he got out to the parking lot and zap! down he went, face first. He didn't remember a thing. That's when he got serious about trying the medication they recommended - Amiodarone. It worked so well, his ICD never fired off again.  And the med helped so well he lived for another 19 months. He did pass away recently but his heart was doing fine (well, he still had heart failure). Cancer took him from us.

Long story I know but I also want you to know there is hope. Finding just the right med can do the trick.