VF Experience - Give and Take

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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johncm
Posts: 5
Joined: May 31st, 2018, 5:30 pm

VF Experience - Give and Take

Post by johncm » June 10th, 2018, 3:46 pm

<t>Hello ICD community,<br/>
<br/>
It's been awhile since I posted. Nothing like a shock to motivate a person.You can see my journey by looking at my signature at the bottom. I'm 62 years old. I have some experiences I want to share followed by some questions. Hence, the "Give and Take" in the title.<br/>
<br/>
Two years ago I went in for a test to see if I had an electrical problem with my heart. I went into almost an instant VF rhythm and had to be shocked twice by my EP to get me out of it. Afterwards, he implanted my defibrillator/pacemaker and I became part of the ICD community. When I got out of the hospital I began obsessing about those painful shocks and couldn't sleep.I went to a therapist and she said I had PTSD. Two things came out of that experience. I will always have the doctor "knock me out" before every major procedure or test. Secondly, Saturation Therapy really worked for me and I hope for others out there.<br/>
<br/>
Now for the ask... I am now fully ramped up on meds at 750 mg of Mexiletine. It makes me feel like I'm in my 80's. My next step is probably ablations. How do you find a world renown EP to do the procedure? I really got nowhere after a web search. I live in San Antonio,TX and fortunately have the current means to travel to find the talent and get the best 2nd opinion. Recommendations are welcomed!<br/>
<br/>
Lastly, how do they avoid creating more scar tissue when they take out scar tissue during an ablation?<br/>
<br/>
Many thanks for this sharing community - JOHNCM</t>
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Mexiletine to stabilize
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018. VT for 10 seconds
Mexiletine increased to 750 mg

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Colin Pearson
Posts: 925
Joined: August 12th, 2013, 6:25 am
Location: Berkshire England

Re: VF Experience - Give and Take

Post by Colin Pearson » June 14th, 2018, 4:40 pm

Sorry John, I cannot help with the EP.

But have been along a similar path with zaps and then drug changes. I'm currently on Amiodarone. I had one attempted ablation but they couldn't induce my heart into playing its game.

mkk
Posts: 13
Joined: June 11th, 2018, 6:31 pm

Re: VF Experience - Give and Take

Post by mkk » June 14th, 2018, 6:00 pm

Hi johncm. I'm also hopeful that, in the near future, ablation will be accepted therapy to cure my Brugada syndrome. Currently, ablation for Brugada is largely an experimental treatment (with very promising results according to medical literature) reserved for those who suffer frequent episodes or ICDs are contraindicated.

If you don't mind, I'm wondering what condition you have that ablation would fix. I just want to learn more about ablations curing electrical problems.

johncm
Posts: 5
Joined: May 31st, 2018, 5:30 pm

Re: VF Experience - Give and Take

Post by johncm » June 14th, 2018, 8:52 pm

Thanks for the response, folks.

MKK - I was diagnosed with ventricular fibrillation 2 years ago. We've been managing the out of control rhythms with meds. Namely, Mexiletine, that I understand is Lidocaine in a pill form. I'm on a pretty high dosage and understand ablations maybe the next step. I have a lot of scar tissue and the procedure tries to freeze or burn this tissue so electrical impulses flow freely and don't get stuck in a loop. Pls note this info is pieced together from conversations with my EP and may not be textbook material.

Stay well - johncm
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Mexiletine to stabilize
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018. VT for 10 seconds
Mexiletine increased to 750 mg

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ricatlga
Posts: 400
Joined: February 2nd, 2010, 8:57 am
Location: Atlanta, GA USA

Re: VF Experience - Give and Take

Post by ricatlga » June 15th, 2018, 9:52 am

Hey John - I think you'll find that others here have ended up with a tour of the various heart meds to deal with the VT/VF. When I first had my EMT intervention (naturally on the road for a business trip) they started amiodorone. They played around with dosages on that. But after 1 year when my EP retired and I got a new (YOUNG) EP, he was shocked that at my age I was being treated with that and not a different drug. So he switched me to Sotalol. Big difference in the way I felt.

Now, I did not shop around for best doc for ablation. I had shocks about every 6 months for a couple of years. But then one time camping with Boy Scouts I had two shocks within an hour of each other. At that point, my EP had me shipped direct from the ER and said that we needed to try an ablation. Because he was part of Emory University, which has a big heart program, and I really liked the guy, I didn't consider options. Then again, this was sort of you're in the hospital now, let's get this done.

My understanding is that no scar tissue is removed during an ablation. If you are not at a major hospital with a big specialty in heart problems, I'd suggest looking for those.
Raymund
Replaced ICD 8/30/18 with Medtronic Visia AF SureScan MRI ICD
Ablation May 2012 - Sotalol discontinued in September
VF unknown cause 1/19/2010, Medtronic Secura-VR 1-22-10
Mitral valve repair Dec 2007

mkk
Posts: 13
Joined: June 11th, 2018, 6:31 pm

Re: VF Experience - Give and Take

Post by mkk » June 15th, 2018, 1:10 pm

Thanks johncm. Do they know what caused the scarring?

Might be a little off topic but one of the emerging theories for Brugada is build up of collagen or scar tissue in the heart interfering with electrical signals as you say. This might be worth noting in my case as I tend to scar pretty badly (as does mother, and her father died young from possibly heart related issues: stroke preceded by fainting spells).

Judging by the medical literature, ablation is likely to be implicated for treatment of Brugada. Being 32 I'm hoping ablation therapy becomes widely be accepted and it'll "cure" me instead of just ICD with which I can still pass out and get injured, pass out in front of clients/in a courtroom, etc.; to prevent arrythmia instead of reversing them after the fact.

But we'll see. I expect (and hope) it'll be close to a decade until I have another syncope, and I just had the ICD implanted on Tuesday. Perhaps the risks of ablation will be too much for someone with rare episodes as myself.

johncm
Posts: 5
Joined: May 31st, 2018, 5:30 pm

Re: VF Experience - Give and Take

Post by johncm » June 16th, 2018, 3:39 pm

Hello Raymond.

Thank you so much for your response. I believe many of us feel like we're an island in a vast ocean of questions. We're trying to figure out how we got here, are we getting the best treatment and is there a better solution for our ailments? Discussing with doctors tends to be one sided and expensive. Sharing your experience has given me renewed hope and I'm impressed...you really seem to be living life.

Also, what is it about the Boy Scouts! I had my first episode at a camp out with the Scouts. Cheers!

MKK,

My doctors don't know how I got my scar tissue. They suspect I had a virus at some time that attacked my heart.

I just met with a heart researcher friend of mine. His wife is a nurse administrator. They are going to check with their contacts for an ablation specialist. I'll ask them about Brugada and ablation treatment.

Happy Father's Day, gentlemen!
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Mexiletine to stabilize
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018. VT for 10 seconds
Mexiletine increased to 750 mg

johncm
Posts: 5
Joined: May 31st, 2018, 5:30 pm

Re: VF Experience - Give and Take

Post by johncm » August 18th, 2018, 3:13 pm

So, I was able to find a highly qualified 2nd opinion. I searched US News & World Report for top cardio hospitals with renown ablation specialists. I found The Heart Hospital Baylor Plano (Dallas) and came up w/ 5 specialists there. Fortunately, this hospital and doctors are part of my health plan and only a 5 hour drive from San Antonio. I had a buddy up in Dallas that goes to this same facility and he vetted my specialist list w/ his doctor.

I met w/ Dr Adam Shapira 2 weeks ago. I'm so glad I got another opinion. I didn't hear what I wanted to hear, but we have come up w/ a plan to change my meds so I feel better. The doc said V Fib is difficult to map and I may not survive this process. Instead, we are going to have my current EP switch my meds to Sotalol. My ejection fraction should be strong enough to handle the Sotalol loading. I have to be admitted to the hospital for 3 days to make sure my heart can handle the new medicine. I go in to see my current EP in a week to have him bless the new plan.

My situation maybe different from others w/ V Fib. My point in sharing is to stress getting a 2nd opinion from a specialist in another town. My EP was fine w/ me getting another opinion, but wanted to send me to a doctor in his group. Kinda like getting another estimate from a mechanic in the same garage.

Be well people - johncm
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Mexiletine to stabilize
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018. VT for 10 seconds
Mexiletine increased to 750 mg

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ROBO Pop
Posts: 4511
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: VF Experience - Give and Take

Post by ROBO Pop » August 20th, 2018, 12:54 pm

yes must be something in the Boy Scout canteens. I was on my first camping trip as an assistant Scout Master. When the Scout Master was stricken with a heart attack. He wound up in the hospital and became the first heart transplantee in Arizona...a very long time ago in a galaxy

Virtually anything that causes damage to the heart, ie heart attack, congestive heart failure, Cardio Myopathy, Myocarditis, and so on, can cause build up of scar tissue on the electrical system and cause the irregular rhythms. An irony is that Ablations used to "fix" arrhythmias can actually exacerbate the problem and works on the very proposition of scar tissue. ie they are building up scar tissue on the node to stop or delay/reroute a signal.

I'm not a fan of Ablation as many here have heard. Ablations often must be done several times before they are successful, if ever. I think Al posted a AMA report on ablations and success rates...not pretty. Been there done that and made it worse. Not to worry, I got me one of dem CRT-D's with the lithium Ion batteries that were recalled for exploding. Guess if I have another episode of V-Fib it'll blow and solve the problem.
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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Ozchrissy
Posts: 7279
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: VF Experience - Give and Take

Post by Ozchrissy » August 21st, 2018, 3:17 am

I must admit I have never even considered Ablation and it has never been put to me by any of the Cardiologists I have seen. I was always under the impression anyway that Ablations are only done on Atrial Rhythms, and from what I am reading here, that seems to be a pretty common consensus with other cardiologists.

My original diagnosis was cardiomyopathy, but my heart has taken a bit of a beating over the last 19 years, with septicemia having its evil ways and also chemotherapy. The original cardiomyopathy I believe was caused by a trial I was on at the time with a breast cancer drug called Tamoxifen, it was to show if the drug would prevent the breast cancer, but I had every side affect listed, and also after I got the cardiomyopathy I found papers that indicated that heart muscle damage was also a side effect. So I am pretty sure I have a good idea where all my damage came from, and why I am having heaps of events each interrogation, but so far, most of them don't interfere with my normal activities.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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whiteheadjf
Posts: 531
Joined: March 15th, 2009, 6:19 pm
Location: Hartsville, SC

Re: VF Experience - Give and Take

Post by whiteheadjf » August 21st, 2018, 11:48 am

Ozchrissy wrote:
August 21st, 2018, 3:17 am
I was always under the impression anyway that Ablations are only done on Atrial Rhythms, and from what I am reading here, that seems to be a pretty common consensus with other cardiologists.
Ozchrissy, I think the cow's out of the barn as far ventricular ablation becoming more common these days. That includes me as found out yesterday that I'll be having one in three weeks (will post a separate comment about those details). I'm doing my due diligence in the coming weeks to find out more about what I'm getting into (and if I want to really get into it!!) and I have to say so far what I'm reading is pretty positive. One of the reasons for my ablation is suspected PVC-induced cardiomyopathy so I found this particular article of much interest. Interesting too mkk is that one of the contributing authors for the article is Dr. Jofep Brugada who is one of the pair of Spanish cardiologist brothers for which your syndrome is named.

Johncm: I can't add anything more to answer your original question apart of what others have said but I will say what is obvious: you need to have confidence in your EP. I'm having mine done at Palmetto Heart center here in SC by a Dr. that has averaged 200 ablations over the last 12 yrs. It's not Cleveland Clinic and he's not Josep Brugada but even though he is a new EP for me (that's a whole 'nuther story) he showed me a lot of confidence in being able to successfully "map and ablate".
non-ischemic cardiomyopathy
Medtronic Maximo II 2009
Boston Scientific 2015 (generator replacement)
Pacemaker syndrome / PMT 2015
Boston Scientific CRT-D 2016

johncm
Posts: 5
Joined: May 31st, 2018, 5:30 pm

Re: VF Experience - Give and Take

Post by johncm » October 1st, 2018, 6:02 pm

<t>Hello folks,<br/>
<br/>
I have more to share, but first the disclaimer: Pls double check this info with your doctor. Sometimes I hear what I want to hear.<br/>
<br/>
That said, I went back to my original EP and had a very direct and enlightening conversation. This was after I had gone out of town to get a second opinion. My EP had absolutely no problem with this. And I highly recommend it. It helps you ask the right questions in the future.<br/>
<br/>
He confirmed I have been experiencing shocks due to V-Tach. Fortunately, they haven't evolved into V-Fib, after the first one. My last shock resulted in increasing my Mexiletine to it's upper limit and the side effects make me feel like crap. So now my Doc recommends ablation.<br/>
<br/>
I had been concerned the ablation procedure would just cause more scar tissue. My EP explained scar tissue has some living tissue areas that cause the electrical charges to get stuck in loops...creating V-Tach. The ablation procedure eliminates these areas by burning them so they will no longer carry an electrical charge. In fact, he can connect the ablated scar areas to parts of the heart that do not conduct electricity. This effectively grounds the abalated areas so they cannot be future electrical pathways.<br/>
<br/>
My doctor has done about 1,500 mapped ablations since 2002. He said he has a 70% success rate. However, some cases required multiple ablations. I'm 62 without any other health issues, so it's probably better to do it now instead of waiting. I could try and change meds, but I would probably face another set of side effects. I'm going in for another consultation to find out about recovery times, but afterwards I think I"m going to have the procedure for my birthday in January. I have never really cared for birthday parties!<br/>
<br/>
Cheers - Johncm</t>
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Mexiletine to stabilize
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018. VT for 10 seconds
Mexiletine increased to 750 mg

User avatar
Ozchrissy
Posts: 7279
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: VF Experience - Give and Take

Post by Ozchrissy » October 1st, 2018, 8:11 pm

John, you are fantastic with how you have researched your procedure. You seem to be in great hands, and your decision to have the ablation is being done with your full knowledge and understanding. Good for you and I am positive your procedure will be successful. At 62, you have to make these decisions while you are strong enough to cope. I have done the same thing, and it has always been a success.

Whitehead, great to see you back, and also good luck with your procedure. I know I get a lot of 'events' each interrogation (3 monthly) and they have to be caused by scar tissue, as there is never any reason physically that would indicate why they happened. Completely out of the blue. I am glad that these procedures are happening more often now, but as I said, I have never even had it suggested to me.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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