ABLATION: glad you tried it...or not?

[ptadvoc8]

Hi,

As a WPW patient with symptoms for more than 40 years and a former professional (now retired) working in health sciences, I have been following EPS and ablation procedures for tachyarrhythmias for some time, but have so far elected not to have the procedure. While I believe that in the right hands ablation can truly make miraculous changes in the lives of properly selected patients, I also see some trends that disturb me, both in the published research and on the community boards like this one.

One of my concerns is that the actual anectdotal evidence I hear and read from patients, and hear from some other health professionals, does not seem to correlate particularly well to the published data in re success and complication rates. (On the internet I would expect to perhaps see a bias towards more negative experiences, but in person I would expect patient reports to be more balanced.) In addition, it seems to me that rather too often, particularly when it comes to ablation procedures, patients do not seem to be getting all the information they need to make a truly informed decision and to know what to expect post-procedurally. As the number of ablation procedures has been growing exponentially recently, especially for AFib, and this is now becoming a major source of revenue for hospitals, (which in many cases overtly "market" their services and facilities) I really would like to hear from the greater patient community about their REAL experiences of ablation since I am trying to ascertain for myself whether or not others who have had tried it feel, based on their own subjective experiences, that ablation is as safe and as effective as the medical community purports it to be.

If you had an ablation procedure, would you mind sharing the following information?
1.) What was your diagnosed condition (WPW, AFib, SVT, etc.)?
2.) Was it successful?
3.) How many ablation attempts have you tried?
4.) Did you have any complications?
5.) Do you think you were fully informed and aware of success and complication rates?
6.) Are you glad you tried ablation?
7.) Would you try another ablation or recommend the procedure to your family or friends?
8. Have you experienced a change in the quality of your life for the better or worse or is it about the same as before you had the ablation?

Thank you very much!

[mabebesc]

We'll be in Portland but the dates are still up in the air.  Are you from Oregon? I haven't heard too much about the Rose Festival but my husband said it's supposed to be really nice.

[ireneo]

May I ask where in Oregon you'll be? Perhaps the Portland area? You're missing the Rose festival this week. Anyway, the weather is perfect right now. I hope it stays that way for your visit.

[mabebesc]

I really didn't choose my specialist all on my own.  Actually my GP referred me to The Boston Medical Center Electrophysiology Dept.  I called the Dept and a very nice secretary answered all my questions about the Dr.s who worked in the Dept. I ended up choosing the head of the Dept.  I didn't have a whole lot of communication with my Dr. before the ablation.  I saw him twice in his office for consultations where he answered all of my questions. I received all my emotional support on this forum- again, thank you all so much for bring there for me!!

To answer Cheesecake 70's questions, I haven't had any episodes where I get up from sitting down and my heart races and I feel light headed.  I also haven't had any shock treatments since the ablation.  In fact, June 4th marks my 10 month anniversary being SVT free.  I suppose I'm one of the lucky ones who had a very positive ablation experience.  I just said to my hubby this morning how wonderful it is to be living life like a "normal " person.  Prior to the ablation, I always worried about my heart going into SVT and having to deal with getting it to stop
.
In fact, I'll be leaving for a trip to Oregon in a couple of weeks. It will be my first time flying  since the ablation.  What a relief I won't have to worry about dealing with SVT!

Betty

[ptadvoc8]

THANK YOU all so much for sharing your experiences! It is really helpful to me to hear your feelings about your experiences with ablation, as well as the more technical details. As so many others have suggested, I am trying to do all my "homework" to make sure that I make the most appropriate decision for my situation.

Ireneo - Yes, I do wonder if the responses here would skewed more toward negative experiences, but one of the things that has impressed me about this site is the support and helpfulness of both those struggling with their conditions and those who have found some relief in one form or another!

Chriswpw - Wow, that is a frightening experience. Glad you came out of okay and that the ablation was successful after all that! If you felt comfortable sharing, I would be curious to know what caused you do code and how/why you feel your life is restricted, especially if the ablation was deemed to be successful. My condition is also WPW and the reason I am considering ablation is because after 40 years of this I am hoping to have a less restricted life. While the "official" statistics suggest very high success rates for WPW ablations, when talking directly with other patients, I have often heard that many post-ablation patients who have been "successfully" ablated have not felt as asymptomatic as they expected to. This is one of the reasons I have held off.

Mabebesc - Thanks for that generous offer! I would be really interested to know how you chose your specialist and facility and what type of communication you had with your EP prior to the procedure.

[cheesecake70]

I had the ablation procedure April13.  I have had three shock treatments since the operation.  I seem to be okay now.  However when i sit down for a while and get up
my heart races lightly and makes me somewhat lightheaded.  Did you have any of this?
My dr. is Dr. Oza at St Vincents Hospital in Jacksonville Florida.  

Dr Oza plans to take me off of the Rhythmol medication  June 23rd.  I am very leary
about being taken off the Medication, as this all began in my early sixties, and I
have had around 10 electric shocks in all,and had to get another one. I just turned 70 yrs.
Thanks, Janice

[mabebesc]

Hi,
I had a successful ablation for AVNRT in Aug.2008.  I had been dealing with SVT for 36 years ( I am now 54).   So far, I haven't had any more episodes of SVT.
I was very well informed prior to the procedure. My experience was an excellent one. I had no complications other than a right groin bruise which lasted for a few weeks.  I found the ablation relatively easy to go through (much easier than dealing with the SVT episodes)
I would definitely recommend an ablation to my family and friends. It absolutely changed the quality of my life.  I only wish I had done it sooner. I'd be happy to answer any questions you or anyone else on the forum may have.
Betty

[sick and tired 47]

Hi!
I had attempted ablation for SVT. Drs unable to find spot to ablate. It was uncomfortable, recovery was the worst... was terribly sore in groin and black and blue.Not the worst thing I have ever had,... no it is not fun. But I would do it again tomorrow if I could get off heart meds for good.
I had no complications except it was unsuccessful. I had great dr... I just wish I had got 2nd opinion before trying it... I was just so happy to hear I had a heart issue ( drs. kept telling me it was in my head) .
  I am still on betablockers... my quality of life has not changed for the worst, it is better after trying many different meds til I found one that worked and least side effects. But again... if I would definitely go thru again to be off meds for good.
  I agree with other posts... do your homework... and then go for it.

[Sweetwaterguy]

One ablation for a fib 2.5 years ago, and it was successful.  No complications from ablation.  No medication other than statin and daily aspirin.  I heartily recommend it--pun intended. Male, age 66

[Chriswpw]

1. WPW

2. Yes, cured the wpw

3. 1

4. Yes, During the procedure, I coded and had to be defibrilated

5. I would say on a scale of 1-10  an 8

6. Yes.

7. Yes/No depends if it was life threatning situation, most likely yes

8. Quality of life has not been the same. Feel as if i am restricted. but still glad to be alive.

[twinbee]

1) Diagnosed condition -  A-Fib, A-Flutter, Occasional V-Tach

2) Was it successful - YES

3) How many ablation attempts? - One

4) Complications? -  No not from the ablation, I did have a temporary loss of feeling in my right thigh from laying flat on my back for so long and it aggravated a nerve

5) Was I fully informed?- Yes. I meet with doctors for 2 years before I decided to have the ablation.

6) Am I glad I had the ablation? - YES!!!!! I wish  I had  done it sooner!

7) Would I have another one or recommend? Yes, I would not hesitate to have another one. Hopefully, I won't need one. I have recommend ablation, and my doctor on several occasions.

8) My quality of Life changed 100%


I had my ablation for a-fib and flutter  in January 08. The procedure took alomost 8 hours. I have been in NSR ever since. I do get an occasional PVC/PAC but nothing bothersome. As of today I am off all meds, including coumadin. I personally feel if you decide to have an ablation done you need to do your homework. It took me two years of meeting with EP'S around the country and finally deciding who I was comfortable
with.

[ireneo]

Collecting information on a board like this may be skewed since those with truly successful ablations have no need to visit a heart board any longer. Those of us that have had less than perfect ablation results will come to gather more information or commiserate with those still struggling with arrhythmias. With that in mind here are my answers to your questions:

1. Diagnosed condition: PAC's, PVC's and PSVT but then found some erratic atrial flutter during the first ablation.

2. Successful? Not completely but there is marked improvement.

3. # of ablations?  3

4. Complications?  Absolutely none

5. Fully informed? From what I've read about others' ablations I feel my doctor was very informative and helpful, explained everything face to face as well as giving me printed information to take home and read. The only thing left out which seems to be common to most ablation patients is the fact that there will most likely be some sporadic arrhythmia for a few weeks after the ablation procedure as the heart heals. No one seems to mention that part.

6. Glad I had ablation(s)?  Yes

7. Have another or recommend to someone?  I will not have another since I've had 3 done now. That's my personal limit. I would recommend an ablation to someone if their arrhythmia is very life disrupting and they have an experienced EP to do the procedure.

8. Change in quality of life? Yes. Although I still have ectopics and some atrial tachy, the tachy is brief now (usually less than a minute) and quite manageable. I still don't have the freedom to do whatever physical activity I want (like climb hills or run) but those are things I can live without. My life is full and I'm quite content.

[stutterheart]

If you had an ablation procedure, would you mind sharing the following information?
1.) What was your diagnosed condition (WPW, AFib, SVT, etc.)?
I presented with ectopic beats at rest and when in the recovery period of exersize, I would get long pauses then a burst of beats, another long pause (and drop in blood pressure I think) then a burst of beats, repeat 5 more times and then degenerate into self limiting 300+bpm tachy for 3-5 minutes with no syncope. ECG, holter and echo were insignificant. Atrial flutter, Wenchebach and AVNRT presented upon stimuli in EP study.
2.) Was it successful?
The jury is out but I suspect not. I still get the same exact symptoms except that the exercize related presentation does not degenerate into 300+bpm tachy as before. I suspect that this is because I don't have as severe panic when it happens and because I've learned that the 300+bpm happened only when I would lay down and put my legs up (as advised).
3.) How many ablation attempts have you tried?
One.
4.) Did you have any complications?
It was painful. You can feel them burning your heart and shocking you. Also, they gave me a medicine to take me out of drug induced arrhythmia which was about the most painful experience I've had and I've broken about everything.
5.) Do you think you were fully informed and aware of success and complication rates?
Yes. My EP, Dr. Anthony Aizer explained everything very well.
6.) Are you glad you tried ablation?
Absolutely. I'm hoping to have another. If nothing else, I am comforted by the fact that they were not able to induce any ventricular arrhythmia. Additionally, it was about the coolest experience I've had. I'm fascinated with medicine and it was tantamount to going up into space for an aspiring pilot.
7.) Would you try another ablation or recommend the procedure to your family or friends?
I will try another ablation. I feel they are very safe if you have the right doc.  I understand the incidence rate to be 1:1000 and the incidents are mostly something like 'excessive bleeding from femoral'. And then you have to figure in that the study sample includes first timers and the less-talented/trained. I don't think there is much that can go wrong: they have total control. I think that if you die on the table or come out of there worse off than before, your EP spilled coffee all over his controlls or you had something that was going to kill you in the next year anyway.
8. Have you experienced a change in the quality of your life for the better or worse or is it about the same as before you had the ablation?
My quality of life has been better, albeit slight. As I said, the symptoms are still there and have not changed. But the reassurance that they were not able to induce anything scary is comforting.

Note that my experience and scope of understanding is somewhat limited to my specific problems and not to WPW. I'm not sure what the corrective measure will be and don't know how risky it is. After my ablation, my doc said that he wanted to get to another problem (an area of tissue firing off beats) but that he and I were probably too fatigued after 7 hours on the table as it was a bit more dangerous than the cavotricuspid isthmus ablation. That is certainly wise but does show that there is a stratification to the risks of various proceedures.
My best advice would be to get with a good team that is known, practiced and published (and I'm sure you will). I highly recommend NYU Langone Hospital and their Leon Charney Heart Rhythm Center Drs. Aizer and Chinitz. Not only are they world class physicians but they really take into consideration quality of life and explain everything so well.

Best of luck,
-A