6 Ablations Later And Scared To Death

[John Morales]

Hello, My Name is John and IM a 49 years old , looking for  some sympathy, advice,help and understanding, but aren't we all here. Here goes my story.

  I am a Veteran now of 6 EP Studies and ablations and  in about 9 years , Having 2 in 1993-4 and having had 4 in the past 2 1/2 years and 2 in the last 3 mo. including a trans-ceptal PVI attempt which turned out was un-necessary in February.

My last ablation was 6/10 and was suppose to be a piece of cake as the Dr. said he had a pretty good grasp on what my problem was (not the case) That ablation has turned into a nightmare for me it appears my Dr. was ablating close to the SN and the Dr. now feels that maybe some of the burns have caused some damage to my SN, acording to the nurse notes he did about 60 burns all in the upper Atrium  around the SN and that I probably fell in 20% Of those who have post procedure problem.I now appear to have Sick Sinus Syndrome or SSD. or Sinus Node Dysfunction Im not sure.

Here are the details of what happened on that Procedure and what is happening now....After the ablation on Monday 6/10 my base HR after the procedure was 108, on Tuesday I was started on a loading does of Amiodarone besides the 25mg of Metoporol I was taking ,My HR stayed that way until I was awoke on Thursday morning by the nurse becase my HR had suddenly dropped to 38 well I paniced after being in the 110's for the past few days (the world was comming to an end) my base rate stayed at 50 or so for another 5 days they stopped the Amiodarone, (CONTINUED ON NEXT MESSAGE......................DR Q's NEXT MESSAGE....

[wow23]

A related discussion, has anyone had tachycardia come back? was started.

[ValerieL]

Wow! Now this scares me so bad! I have SVT, and have had it for 26 years. It has gone mostly unrecorded, although some slower incidents were recorded. I kept telling them this wasn't the bad ones I get. Finally, my event monitor recorded my worse ones at 242 bpm. My doctors agree that is just too fast and that I take a chance if I am driving or something and this happens. Also, as I get older it is not good and pretty much that it is just too fast. So, meds did not work, they want to go the ablation route. Stanford Hospital, Dr. Wong will be calling me this week to set it up.  My sister had 3 ablations with no after effects, and I was going to try and post a question, but now I see this post and that just freaks me out!!!! Is there a high percentage of this type of thing happening? I am not sure what to do now. I am really scared anyway. Anyone have any suggestions or comments? John, that is just too bad what has happened to you.

Thanks so much!

Valerie

[cyn123]

Hi John  if you are in NY and want to find a Good Ep Doc you should go to yale New Haven and see Dr Batsford.  He really helped me a lot and he has a great bedside manner and seeems to understand our anxiety.  Good Luck to you, it sounds like you have been down a rough road and still dont have answers.

[Lyn2]

I just couldn't resist commenting on your story, as it sounds very familiar to me.  I am female in my 30s. I have had 4 ablations, and multiple burns.  I ended up needing a pacemaker after my second ablation due to damage of the sinus node.  I left the hospital with a heart rate in the seventies, and over the course of a couple of weeks it dropped into the teens and twenties with long pauses.  I developed heart failure and then received my pacemaker.  Over the course of the next few months after my pacer I developed a-fib and other arrythmias that I did not have before.  I now take amiodarone and cardizem which I have been on for three years.  I have had some liver toxicity from the amiodarone and extreme sun sensitivity but it is the only med that works, that I continue on it.  My most recent ablation was a couple of months ago, which damaged the pacemaker lead.  I had a new one put in, developed a staph infection, had the whole system removed, was on IV antibiotics for 2 weeks in the hospital, then had a whole new pacemaker system implanted on the opposite side.  Because of all the burns to my atrium, it took hours to find a spot to put the atrial lead.  There is only one place where it works.
Anyway, although my story is long, I just ran through a few years in a few sentences.  Obviously there is more between the lines. Now, despite the fact that I have had one problem after another, I respect and trust my doctors.  Needing a pacemaker after an ablation is a known possibility.  It is really not so bad, and it will normalize your heart rate.  Don't blame your doctor too much.  I understand your frustration.  It is scary and overwhelming.  Well, gotta run.  Good luck.

[LynnSB]

Here's a thought. The VA Hospital in Atlanta is affiliated with Emory. The Emory Heart Center is ranked in the top ten US News and World Report Ranking ( it is number 7, Cleveland Clinic is number 1) -- the doctors at the Atlanta VA are Emory doctors including cardiologists. Emory has some nationally known EP docs like Angel Leon and Jonathan Landberg, etc. Maybe you could be check out the VA Hospital in Atlanta for help???

Good luck,
Lynn

[John Morales]

Hello I'd like to thank everyone for there comments regarding my case I am sorry I am long winded,My biggest concerns and problem now is My erratic  HR,  it changes drastically and constantly from one moment to another I could be at 65 finally and saying please stay like that a few days and next think I know its 130 for the next two to three days. I am sorry If I took to much space here and  to detailed a story, I don't think Im alone in feeling like I do.

Anyway, Thank you all if anyone has any ideas or techniques for breaking your a-fib pac/pvc I would be interested in hearing them.some people seam to have ways of breaking it I am yet to find any that work for me.

Gratefully

John

[John Morales]

At this Point the Dr. said I needed a Pacemaker which they were gonna put in on Monday. HE said that the pacemaker would keep my rate at 60 and the Amiodarone would keep it steady.

I decided that maybe it was time to put a halt to this till I can get a grip on what's happening to me, as well intentioned as the Dr. is they have been unable to do anything right as far as I was concerned.

After I went home I had 3 days of low HR in the 40 - 50 total. I got up on Thursday a week later and all of a sudden in was at 93 it has now been in the hi 80's to about 110 at rest, mostly sitting about 90.

Now days everyday is an adventure, As I don't know what Im gonna wake up with. What rhythm and Heart Rate I will have.


Anyway im pretty much resigned to the fact that what I have now Im gonna have 6 ablations and 10 years later there is pretty much nothing left to burn in my Atrium and it will pretty much take a guarantee from God to let anyone else burning in there.

Now that Ive said that here are my questions since there are many knowledgeable people here as well as well as many who suffer like me.

          ------------- QUESTIONS FOR DR. ------------

As it appears I may never see Normal sinus again. What is the downside to having irregular rhythms constantly I mean I get up in the morning and my HR is sometimes 80, 120, 50 in the afternoon it may sit in the 120s down to 80 up to 120 include skip beats and occasional PAC/PVC this is all day everyday, the Dr. tells me it's not gonna kill me and 'll have to get used to it...Which is not easy as the Rate changes I sometimes get light headed and get this foggy fleeing in my head.

1- Can someone live with these type of erratic HR Rhythm does anyone here suffer with anything like this or is it something Im gonna have to constantly work to correct.

2- Has anyone here had or know of anyone who has had 6 or even 2 or 3 multiple ablations In looking at my records it appears I've had close to 200 burns done...I feel like I was used here to further along their technique.

3- Is Amiodarone really that bad I was on it before for 3 years and didn't have much problem as long as I monitored my critical functions. None of my Hospitals are Tikosyn accredited.

4- Is it possible to find out how much damage has actually been done to my heart with all these burns during my ablations.

I am seeking a second opinion and the VA in NY but with my History,Im sure it's too late, I guess I want someone to tell me that my present Dr. is doing the right things and that I can live with this condition.

Whenever I get real depressed which is most of the time right now and stressed I just close my eyes and imagine myself walking down those hospital halls peeping into those other rooms I know so well and remember there are a lot of people out there much worse than me, thought Im not in one of those beds possibly dying I sometimes feel like I am, that doesn't help my situation but sometimes it give me a bit of gratitude IM still able to do the things I can.

When I reflect and think of it and read the vast knowledge in the Internet, 6 Ablations is a lot, I  Hope the Dr's would not have done or continued to attempt them if they thought that it was to much or not worth it(I hope not).I remember telling the Dr. in the Cath Lab 6/10 PLEASE side on the side of caution, guess he wasn't cautious enough......

I hoping to find someone out here who like me has had a lot of ablations and EP studies so I don't feel like IM alone, and been used as a Ginnie pig in all this.

Once again thanks to all it is difficult to post on here so Im sorry if I vented and rambled on a bit but like most of us here we are looking for help and answers to some questions that don't have one, we do not have a AA or NA or any A for us neurotic A-Fibbers to go to and talk amongst ourselves and find out the things that help during or episodes.

Right now IM on 25 mg Metoporol 2x and took my first dose of 200 Amiodarone after holding off for 2 weeks deciding if I would today being a bad day I took the plunge .the Dr. says it will take about two weeks for it to hit my system in the mean time I try to grin and bear it, anyone else on Ami. ?...

I should also say that I have no Medical Insurance and all my medical care is done at the Veterans Hospital in Pa and NY except in my case because of my cardiology history they sent me to the University Of Pennsylvania which is their affiliated Hospital, for expert treatment and 3D Mapping.

Anyway thanks to you and anyone who writes, and shares their experience and suggestions. Im sorry for ranting and carrying on sometimes sitting here reading and writing helps.

IS the Cleveland Hospital Affiliated with the VA....

Anyone wishing to contact me my do so at ***@**** you are more than welcome

John

[CCF-M.D.-RCJ]

John,

Thanks for the post.  I reviewed your last post, as well as my response.

All of the details in your story make up part of how you view the medical field, and the quality of the treatment you received.  That's what the majority of humans do -- we view the world through the filters that we have created from our experiences.  However, all of the details that you name are less important for determining what to do next.  As an example, the number of ablations certainly sounds like a lot, but the end results are what count for determining the next step.

If you currently have sick sinus syndrome, then you may eventually need a pacemaker.  You will likely decide when this time is for yourself, as you'll eventually feel tired or run down.

It is unlikely that all of the ablations have caused any significant muscle damage.  The size of the burns are roughly pin hole size, and most often do not cross completely through the wall of the heart muscle.  An echo will easily allow a determination of whether or not you have developed weakening of the heart muscle.

An erratic heart beat by itself is not a problem.  A fast and irregular heart beat can lead to problems.  That's why we treat afib, as an example.

Above all else, seek a second opinion.  Going to the VA associated with Emory may be a very good idea.  Alternatively, scrape together the money and seek advice from a big center.  If a procedure was recommended, you could always have it back at your home VA.

Good luck.