Ablation

[Nanasue4]

I'm a 49-YO female w/PVCs, bigeminy, mitral valve prolapse and right bundle branch block. A specialist wants to perform an ablation as he is pretty confident he can eradicate my PVCs.  Am I at more risk since I have other heart issues, or do you think it would be worth it?  Could I end up with a whole different arrhythmia after the ablation?  (I had an AICD for 12 years, but it became infected and it and the lead wire were removed in 2007).  The arrhythmias started 24 years ago after the birth of our 3rd daughter.  Any suggestions about having ablation would be appreciated.  Thanks!

[Jerry_NJ]

I hope you get some one with direct experience posts their thoughts, in the meantime I say that I've read many post about ablations, some great and some not so good.

Ablation procedures in the right side of the heart and in the Ventricle are less risky than those in the left side, and left atrium as is the case for Atrial Fibrillation, which you apparently don't have.

At your young age, 30+ years of life expectancy I think you should seek fixes rather that patches such as medication that treat only the symptom.  Simply put if your doctor can give you better than a 70%, say, chance of success and a less than 1% chance of complications, I think it wise to go for the ablation.

Nothing is certain in this life, and that includes the results from an ablation.

Good luck,

[ptadvoc8]

As someone who has always been rather skeptical of ablations AND who has recently had an ablation, I would highly suggest you get a second and even third or fourth opinion if you are not considered in "critical need" of an immediate ablation. I have spent the last 20 years watching the progress of ablations as they replaced open heart surgery as THE arrhythmia "cure" and have only recently felt comfortable enough to go ahead and try an ablation myself.

There are some wonderful stories of miraculous cures that have truly improved the lives of some patients, but there are also some disturbing stories of things gone very wrong that have really impacted the lives of others. It is my own personal opinion that too many ablations are done on the wrong patients for the wrong reasons by the wrong doctors at the wrong facilities at the wrong times. Ablation for A-Fib is one of the fastest growing profitable procedures for many hospitals and doctors -- a quick surf around the internet and you can see plenty of advertising for ablations at various facilities that compete for your business and dollars. Add to this a surprising lack of long-term outcome studies and you can see why I, and many other patients, are somewhat skeptical and concerned when ablation is suggested as a "cure all". There really are NO accessible longitudinal long-term outcome studies on ablation that look at adults and go beyond 2 years post procedure. The one study that DOES look at post ablation life 2 years out, strongly suggests that the statistics often quoted, of as much as a 98% success rate, appear to be false and that real life success rates are more in the 75% range when you account for various complications, recurrence rates and "improvements" in condition (rather than outright cures). Still, these are pretty good statistics and the success rates and complication rates differ by type of arrhythmia and location in the heart of where the ablation(s) will take place, so knowing your exact condition and the statistics for success and complication rates as they apply to you as an individual is critical in making an informed decision.

That being said, ablation really IS a cure for some people, so don't dismiss ablation without taking the time to do your homework. My best advice would be to "self refer" to some of the bigger and better known facilities (such as Cleveland Clinic, U Mass General, Texas Arrhythmia Institue, UC San Francisco, U Mich, Mayo Clinic and U Pennsylvania in Philly -- there are many others!). Make sure that any specialist you see has expertise in your type of arrhythmia. PVCs can be difficult to eradicate, but they are getting better and better at it, so make sure that you see those EP docs who specialize in ablations for PVCs and bigeminy. Find out how many they have done successfully and what their complication rate is. Find out why they think YOU are a good candidate for ablation and why they think THEY are the right doc for you. The specialist you spoke to may be an excellent doctor who can indeed help you, but also be aware that these days there are many, many EPs who say they can do all sorts of great things when their training and experience may be very limited. When you are on that table in that lab, you want the doc that has extensive training and experience -- and more than one bag of tricks up his sleeve -- and you want to know that the facility you are at will back him up with the best in emergency care if you need it. The reality in today's ablation arena is that having a doc who can use cryo as well as RF, who can do several different approaches to reach the sites for ablation, who has access to facilities with the latest high tech equipment and who does plenty of pre-testing, gives you the best chance for a safe, positive outcome. Also be aware that some docs won't do ablations on some people because they feel the risks do not outweigh the benefits. It can be helpful, if a bit depressing, to hear from them and we need to respect and appreciate their honesty and ethics.  

In the end, only you can make the big decision, but it is a decision I for one would not make lightly -- and certainly not without consulting with several top EPs. Good luck and best wishes!

[Lisa33167]

I have a question, what did you get your AICD implanted for and why didn't they re-implant it?  PM/ICD & lead removals are a huge thing on my mind and a major discussion on another forum I'm a member of.  

I had an ablation for the amount of pvc's [over 54,000] I was having.  I had bigeminy, trigeminy, couplets, triplets, salvos; sustained VT, VT; bradycardia; trace MVP, Mild Tricuspid Reg.; LVH; RBBB; suspected ARVD.  My pvc's existed posterior to free wall area of the RVOT and took about 4 1/2 hours for the procedure.

They felt the bigeminy could be decreasing my blood pressure, contributing to my syncopal episodes and cause enough ventricular dyssynchrony to cause cardiomyopathy; which it did.  I had long runs of polymorphic sustained & non sustained VT before & during surgery.

I had the ablation done and had some major compliations, but the 2 days after surgery were the best I've felt in so long I can't remember.  I had to have a cardiac mri and cath done to rule out genetic & artery problems.  I'm still iffy on the genetic dx; it was inconclusive; but my symptoms and pvc's being where they were point to arvd.

I had my pm/icd [boston scientific] implanted 2 days after my ablation and I'm extremely glad I had both surgeries.

Could you end up with a different thing after surgery? It's possible, I did, but that's just my experience.  Before the day of surgery, I had 1 rare PAC and constant pvc's, after surgery I had 1% pvc's and 28% PAC's, but they don't know why.

My success rate my dr quoted me was much lower around 80% with the problems I had.  I'm hoping I never have another pvc again - that would be a 99.9% success rate.

Definitely research research research; ask lots of questions and get 2nd or 3rd opinions, which sometimes make the 1st dr mad, but do it if you feel that's right.  My cardiologist still hasn't gotten over me asking for other opinions :P  I ended up going with my first EP, but for my peace of mind I had to have another outside opinion.

Good luck.

[Nanasue4]

Wow, Lisa, you had it all!  Are you feeling better now and glad you had the ablation?  
I had the AICD implanted because during the EP study I had done, the doc put me into cardiac arrest by running 2 PVCs together. They also said I had Long QT syndrome, and now they say I don't have it. In fact, my current doctor and the one who removed the AICD don't think I needed the AICD to begin with.  It's hard to know who to believe, which is why I'm nervous about having the ablation. (Does anyone know if U.C. San Diego is a good place to have it done?).  But, boy, would it be nice to be rid of my PVCs!  I'm always so tired and feel like I'm sleeping walking all the time - which I believe is due to not enough blood flow since my heart never beats normally.  

Thanks for yours and ptadvoc8's responses and helpful suggestions!  

[Nanasue4]

Are you  happy you had the ablation and has it corrected your problems?  (Did you have PVCs?).  How would I find out a doctor and hospital's success rates with ablation for PVCs?  I worry about long-term effects too - but I also figure with my heart never beating correctly, it's going to eventually give out!

Thanks for the info!  Hope you're feeling well and healthy now!

[ptadvoc8]

It's too early to say whether or not I am happy I had the ablation -- they say it will take 3 - 6 months to know if it worked or not. I am able to say, so far, that I don't regret having tried it -- and given some ablation stories you read, being able to say that does mean something! While everything went very well during my procedure, I did end up having a rare complication -- frequent and protracted ocular migraines which, while they seem to be improving now, have been challenging to deal with. My doctor said this happens in only about 1% of cases and although it's not much fun, it's a relatively minor complication given some of the other complications.

I did, and still do have, some PVCs, but my main problem is WPW -- a form of arrhythmia caused by congenitally present "extra pathways" that results in SVT (SupraVentricularTachycardia) and rarely, in sudden death. WPW is often one of the easier and safer arrhythmias to treat by ablation and, overall, has a fairly high success rate. I am very happy with the pre-testing, consults, ablation procedure, hospital care and follow-up I received -- I think it was top notch for safety, efficacy and compassion and if I had to do it all over again due to something life-threatening, I would not hesitate to return to Mayo Clinic.

At 7 weeks post ablation I have less SVT (but do still have episodes of it) and it seems to be at a slower rate. Before the ablation I had, and have afterward experienced, plenty of episodes of PVCs, PACs, and "palpitations", but I do think they are of shorter duration and less frequency now. It is my understanding that ablation for focally mediated PVCs is very different than ablation for an accessory pathway, so I would suggest you talk to as many patients ablated for PVCs as possible to hear how they feel about their experiences.

I was very cautious, very selective and very demanding in my pursuit of possible ablation therapy and I spent about 9 months researching the best facilities and best EP specialists. I narrowed it down to 8 then interviewed all 8 facilities via phone, then I narrowed it down some more and consulted with my top 4 EP specialists in person so I got my 4 different opinions (and boy were they different!!) from 4 different facilities and then I chose the EP specialist and the facility that I felt best met my individual needs.

If you have time, do a little research on line and find a few of the top places with specialities in ablation for PVCs, then call them and ask them about their arrhythmia programs, request their success and safety statistics as well as their complication rates. Ask about their facilities, surgeons on standby, certifications, accreditations, technology available, etc. When consulting with a potential EP specialist, ask them to calculate realistic success rates and complication risks for you as an individual with any extra health problems you may have. This is no time to be shy, so if it's hard for you to assert yourself (and frankly, doctors can be scary and intimidating!), take someone with you who will do it for you -- a relative, a friend, or even a reputable health advocate who will not only ask questions if you can't, but who will be there to hear the answers and help you hash it all over later. Remember, GOOD doctors actually expect GOOD patients to ask these questions!

While I am sorry I can't yet definitively tell you my ablation was all a great success since it is still too early, I do remain cautiously quite optimistic about it and absolutely convinced that my research, high expectations and assertiveness were key to my getting the kind of high quality, case appropriate and compassionate care that makes ablations the potential miracles they sometimes are. I'm feeling pretty good and so far have not had any of the really serious post ablation complications you read about that are so scary -- in fact, except for the ocular migraines, I believe my ablation to have gone extremely well and I am feeling pretty good about it.

It sounds like you are really struggling with your cardiac issues much more than I did, so getting another opinion sooner, rather than later, sounds like a good idea to me. Don't forget that in this day and age, you can often easily consult via computer and phone to get second opinons and interview specialists. A good phone consult with a specialist somewhere else who looks over your records and confirms what your doctor has already said might also reassure you that your specialist right there in San Diego is just the right one for you.

[Lisa33167]

You know this is one of the things that was just discussed on the ICD forum - how many have PM/ICD's that may not really need them.  I'm going to have to go back and read the thread over :)

I'm really glad I had the ablation first and then the device implanted, I can see what's going on in my interrogations.  Makes me feel safer that the pvc's are gone, but makes me wonder why I went from PVC's to now being 28% paced Atrial, I find that interesting.

I had to have the icd implanted for SCA also, 3 times during surgery - only 1 time I converted myself back.  I wonder what that's done to my heart and if that's the reason my EF went down 10% after surgery from the month before.  Did you notice anything like that?

I wish I had more time to research and look for a major medical center to go to.  I honestly lucked out with my EP; he's the head of cardiology at the heart institute I went to.  I looked into Mayo and Cleveland Clinics, but they were both out of network, so that could be a factor also.

ptadvoc8 I didn't know you could do consults like that, wow wish I had known that before and I'll keep that in mind - I'm searching for a dr for my ANS problem.