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Should I have an ablation? Reading horror stories here.
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Should I have an ablation? Reading horror stories here.

I was finally diagnosed with SVT 2 days ago (177bpm and was slowed down with Adenosine).  I have been having irregular beats since 1994 (PVCS, PACS, SVT) but never had a run like this that didn't stop on it's own.

The EP Dr. at my hospital in Los Angeles suggested I was a good candidate for cryoablation.  He say's 95% success rate.  I have taken atenolol in the past but have a slow heart rate to begin with (48 or so resting) and the beta blocker made me tired and very cold.

I am considering an ablation but am reading horror stories on this site.  Seems alot of patients have alot more PVCS, PACS, afterward and some are put on pacemakers.  Others seem to be cured of SVT and then it comes back a year or so later.  Some others say that the burns can lead to A-Fib later in life.

Seems crazy to risk all of that.

Any advice?

Also, if anyone knows of an amazing EP Dr. who performs thousands of ablations a year at CC or in Boston or Los Angeles please let me know via private message.  Thanks!
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17 Comments Post a Comment
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967168_tn?1343732745
"Seems crazy to risk all of that" my alternative is death, even with complications during surgery and having a pacemaker/icd implanted the risk of NOT having the ablation & other surgeries far outweighed the risks.
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187666_tn?1331176945
I've had 3 ablations (my heart is stubborn) and I don't consider any of the procedures nightmarish. And I'd rather live with my PVC's and PAC's (little heart hiccups) daily than have those long episodes of tachycardia, up to 198 bpm, unable to move out of bed. I'm happy I had the ablations.
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Avatar_m_tn
Thanks for the comments.  I did not mean to offend anyone, I have just read alot of conflicting stories here the last few days.  
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967168_tn?1343732745
not at all :)  just wanted to make sure you or anyone else weigh all options before deciding against an ablation....it saved my life and lives of others.  

I would much rather know what was going on and find out about malignant heart arrythmia's in the hospital environment than be out doing something one day and my heart go into Vfib again.

It's such a fragile situation with ablations - doctors basically go in blind; maybe with some inkling of where a problem may occur, but not always 100% positive.  The EP Study is for that - to try and map out the problematic areas, sometimes they're easy to find, other times they're not.  

Mine were easy to find because I had pvc's all the time and it didn't take long to map the areas and ablate them.  They were in the back underside thin part of the bottom of the heart that is very delicate and hard to work on though.

If they can't map the area; then the ablation can't be done, or if they can't get your heart to do "funky" things it may do; then they can't find the areas and sometimes that gives them a reason to need to do another one....then sometimes the arrythmia's do come back in another area then you would need another EPS & ablation.
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386141_tn?1291400496
Hi

I have had 2 ablations for SVT. Highest my heart rate went was 300bpm. Very scary!
Last ablation was March of this year. If ablation was that bad a lot of people including myself would choose the medication and not attempt another procedure.

The second one has worked at kepping the SVT at bay but took about 6/7 months for the Pvc and Pacs to calm down, as the heart can be irritable for some months after due to the scar tissue.

I have to say that I'm more scared of the dentist then any of the two procedures I went through, as the sedation was great and I remember nothing of the first and only minimal bits of the second.

It dos not matter what kind of procedue of illness any one has, you will always find horror stories!

Best to listen to the advice of the professionals and make your mind up from there.
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Avatar_n_tn
I was just diagnosed with PVCs (about 8500 a day), in July. They occur mostly when my pulse is under 85 BPM. When my pulse is faster, they go away. I had a treadmill stress test last February (a few months before the PVCs. were found(, and there were no PVCs at all. None. Dr. thinks it's because my pulse was fast.

I also have more PVCs after eating, sleeping on my left side, or when I have reflux. (I have GERD and take Nexium daily, but still get some breakthrough reflux toward evening at times.

Anyway, my question:  I don't need an ablation now, but it seems as though many PVC sufferers find that they need one after awhile.  I'm very allergic to antibiotics. Just about all of them close my throat. Are antibiotics needed for an ablation? I would imagine so. Just wondering. Hope I never have to face needing an ablation, but apparently one never knows. I'd feel better about it if I didn't have the life-threatening issue of antibiotic allergy.
Thanks.
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612551_tn?1247839157
All things have risks, doing nothing has a risk, having no heart symptoms has a risk.  Life is a series of taking forks in the road, not knowing which is will be the best.

My doctors, one Cardiologist and one EP, say my permanent AFib does not justify the risk of an ablation, I was set to go for it.  Their thinking is that given my low symptom level any risk is too much.  The studies say that my life expectancy is not improved by stopping the AFib, and given the symptoms are mild, "just live with it".

I have taken their recommendation/ruling as to do otherwise would require finding a second opinion willing to do the ablation.  For now I am just living with it.
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187666_tn?1331176945
Horror stories can vary - some are truly a case where something went wrong and that's a rarity. Sometimes it's just a matter of perception. Funny story - for years my Mom told me how horrible TB skin tests are, how they shove this tiny needle under your skin and it feels like fire when they inject the stuff. The day came when I needed a skin test and I was petrified after listening to her all those years. Turned out it was nothing. Pbbt.

I'm not a big fan of doctors. They do wonderful work but I'd rather they didn't do it on  me. I was extremely nervous before my first ablation. After that one, when I heard I needed another ablation (and one more time after that), it wasn't any worst than going to the dentist. I didn't like the idea and wanted to be done with it as soon as possible but the procedure itself was actually easier than the dentist thanks to the medications they gave.

No, I don't recall getting any antibiotics. They're not listed on my hospital notes. Just Versed and fentanyl.

I'm not doing the math here but I'm not sure 8,500 PVC's a day will damage the heart. And do you (Madge) have them every single day like that or some good days, some bad? I average 1-5 per minute every day. For a period of 5 months I was having 15-25 a minute almost constantly. And my doctor wasn't too concerned. They did gradually decrease back to my normal. An ablation for yours is something to ask your doctor. He may not be too willing unless you have a damaged heart already.

Filmfanatic: I wasn't offended at all. Just wanted to let you know that ablations aren't that terrible as a rule. With SVT that won't settle on its own, an ablation may be your only choice or you'll have to take that little trip to the hospital each time. No one enjoys that.
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967168_tn?1343732745
Read some of my pre-surgery posts, I was terrified because I had read things and heard things about ablations. I got so used to ignoring the way I felt, I just lived with it also.

With every surgery there are risks; even knowing the risks and being scared about being "one of those rare incidents" of something happening during surgery, I went through with it in hopes of improving my quality of life. I was tired of feeling sick, in pain and not being able to do anything without feeling pvc's.  The 2 days after my ablation were the best I've felt in so long; I forgot what "normal" was.  

I believe for ablations the risk incident rate is under 1%, or something close, which is a very small amount.  

I've heard & read different things about pvc's & heart damage, so I'm still iffy on that subject and what constitues "damage".  My EP said anything over 20% of your total heartbeats over a 24 hr period on a continual basis, are worrisome.

I had over 54,000 pvc's on holter results and hospital monitoring which were about 42% of my total heartbeats; which I developed non ischemic cardiomyopathy.  The EP suspects I have ARVD, testing was inconclusive, but symptoms point to it; trace MVP; Mild tricuspid regurgitation, LVH; malignant pvc's and v-tach that cause my heart to go into Vfib; sinus bradycardia; neurocardiogenic syncope with cardioinhibitory and vasodepressor responses and a Disorder of The Autonomic Nervous System Associated With Orthostatic Intolerance.

I just did my calculations, I was having 37.5 pvc's a minute before surgery, I didn't realize that until I saw  ireneo put 15-25 per min. The doctors never suspected anything was as severe it was with me because I didn't complain or camp out at the hospital and they said with my case I should have been :P  I kick myself daily because I was scared and waited for a 2nd opinion and almost backed out completely.

I got antibiotics after my ablation & PM/icd implant as a precaution; they ask what all your allergic to med wise and if you've had any reactions to things.  What better place to be if you do have a reaction - always talk to your doctor about the antibiotic allergy & make sure they know at the hospital.... they have everything set up before & after surgery to deal with just about any situation.

Each of us have to do what we feel is right for our situation and what will help our bodies heal and improve our quality of life; what might work for someone else may not work for others.  Listen to your doctors and if you still have questions, always get a second or even third opinion and go with your gut.
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Avatar_n_tn
Ireneo, I do hav PVCs every day, but I don't know how many. I'm seldom aware of them, except if I have gas,  bloating, or reflux, or if I lean back and sit "scrunched together" in a recliner.

The antibiotic problem is serious enough that I was advised to quit my job (high school teacher) because I'd get strep, or pneumonia now and then. Nearly suffocated twice from antibiotics. A very scary feeling, and even being put on a ventilator carries the risk of MRSA staph now, so my doctors just tell me I'm a surgeon's nightmare and to avoid infections as best I can.  Unless you've had your throat close and your head swell from antibiotics or other allergens, it's impossible to explain how frightening it is to go through that.
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967168_tn?1343732745
Unfortunately I do know, I'm allergic to penecillin; and had to have an emergency shot of something  when I was 21 and had my tonsils taken out. I had taken penecillin before and was shocked I had a reaction.  Every time they give me something I'm afraid it may be something new I'm allergic to.  The only thing I've found so far that I don't have a reaction to is Levaquin, not sure why though.

My oldest daughter is allergic to penecillin and sulfur drugs, she has asthma and as a child they gave her a med that caused her to be hospitalized because of it, scared the heck out of me.  The dr's told me to never take her near volcanos or parks like Yosimite because of the sulfur there - she's deathly allergic to sulfur.

Wonder how prevelant medication allergies are in families...if you have children, do they have problems also?
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Avatar_m_tn
I'm 50 years old, have had AF for almost 10 years, tried to control with meds, no longer worked, decided to go with the ablations, I feel better now than I have in years. stopped taking all meds day after surgery, recovery was kinda of crappy, but I only took 2 days off work,( should have taken more time.) After 10 days everything seems to be normal,and I'm feeling great. I was worried about the operation before hand, I checked out a lot of web sites, trying to get information about the proceure, and recovery, what I found  is that people who have had good procedures feel great and normaly don't post. People that have had negitive procedures do post. My ablation was a great sucess so all my fears were for not. Don't let all the scary stuff get you down, just try to get as much info as possible. Good luck with what ever you deciced.
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Avatar_f_tn
After very purposefully NOT having an ablation for 20 years, (I have SVT due to WPW) I finally had a cryo-ablation in September. I think you are absolutely right to be "skeptical" and concerned about this procedure -- I am retired from the medical field and worked in scientific research and I was, and still am, skeptical. There are far too many horror stories and it is my 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 time. Ablation is now one of the fastest growing procedures in the US and has one of the highest profit margins for doctors and hospitals. Look on-line and you will see places competing with one another for your ablation business and/or offering "courses" to train doctors to do the procedure. However, the fact is that when performed on the right patients for the right reasons by the right doctors at the right facilities at the right time, the results can be miraculous and life changing.

Do your research and then do some more. Specific conditions causing SVT are more easily treated than others (WPW is generally easier to treat with fewer problems than AVNRT). The locations of the pathways and focal points causing the SVT also make a difference in outcomes (left sided pathways carry more stroke risk and pathways near the septum carry more risk of ending up with a pacemaker). The specialist you have doing the procedure and the facility at which you have it done also make a HUGE difference (the overall stats as collected for research from all over the US and Europe for success and complications are those generally quoted to patients, but the truth is some facilities and doctors have far worse stats than those averages and some actually have better stats). The techniques and equipment used for ablation makes a difference and different people need different ones for the best outcome. Make sure you DON'T end up at a facility with a specialist who is only capable of doing one technique with one type of equipment (for instance Cryo is generally safer than RF but is not the best choice for all patients so having a specialist who can switch from one to the other during the procedure increases your chances for success; another for instance, for reaching the left atrium, most specialists are now trained only in transeptal puncture, but retrograde aortic may be better for some patients, so you want the doc that can do either one since that increases your chances for success).

Unless you are having life threatening bouts of SVT or other life threatening arrhythmias, my advice would be not to rush into this. Most SVTs are life annoyances, not life threatening emergencies. If you can afford to wait and really do your homework, you should be able to reach a decision you feel comfortable with. First, get to the absolute BEST specialist and facility you can. Unless you have an EP specialist you feel really great about already, head straight for one of the "biggies" where they do tons of these procedures with the latest techniques and equipment -- it DOES make a difference in your outcome. Suggestions would be Cleveland Clinic, UC San Francisco, U Mass General, U Michigan and my favorite, the Mayo Clinic. There are plenty of others who do equally good work, but check them out carefully -- you want to find the specialist and facility that can treat YOUR specific type of arrhythmia best. Next, you want to find the specialist that listens to you and takes your case as an individual case. Despite the hi-tech of it all, ablation is as much an art as a science and you want a specialist who works with you to achieve your goals. (some patients are willing to risk having to depend on a pacemaker just to get the arrhythmia to stop, others do NOT want a pacemaker under any circumstances and would rather live the with SVT than a pacemaker. You need to make sure your doctors knows and cares about what YOU want). Finally, I would highly recommend finding a doctor and a facility that value ethics and put the patient first. Not everyone is a good candidate for ablation and lives have been ruined by bad ablations, so make sure your doc is evaluating the situation for YOUR best interest, not theirs, not the facility's, not their research projects, and NOT simply putting you into the one-size-fits-all line as a non-entity for their "razzle-dazzle amazing ablation station".

If you would like to hear specifics about my experience at Mayo Clinic having cryo-ablation for SVT caused by WPW, just let me know and I'll post about it. In the meantime, hang in there, gather all the info you can, talk to everyone you can, read, think it over and talk it over with your family and friends. Only when YOU feel comfortable and ready to proceed should you make the decision -- or not! If you're doing well with the occasional SVT episode you can always put off ablation. I waited 20 years until the technology improved significantly and I have no regrets about that since I was able to live a very full life despite the SVT.

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Avatar_m_tn
I sent you a private message.  Thanks for the lengthy reply.  Very helpful.  I would love to hear about your experience at the Mayo Clinic.
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996946_tn?1385991151
Hi, and welcome.  I went for a consult with Dr Natale from the Cleveland Clinic, now in Austin and Ca., this past week and I was very impressed.  They are already scheduling into April and I am on the books for then. I would definitely recommend him, if an ablation is inevitable.
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967168_tn?1343732745
I've heard so many great things about Mayo, I tried to get an appt with them for my ablation but they were out of my insurance network.

It would have been $12,000 vs $3,000 deductible for in network. I have United Healthcare and my plan pays 100% after my ded is met, but I was really surprised they were out of network since United has a huge network.

I would love to go for a full workup and have them check my dsyautonmia problem; what type of Ins do ya'll have that Mayo is included?
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Avatar_f_tn
Hi Lisa -- Glad to hear you are making a strong recovery as you have really been through so much!

I am quite fortunate to have outstanding coverage through my husband's retirement from the Federal Government. Our plan is Federal Employees Blue Cross/Blue Shield and I can't say enough positive things about the coverage and the support they provide. Because I was born with my condition most insurance companies would not cover it as a "pre-existing" condition when I first got married all those years ago and changed to coverage through my husband's policy, but we chose FEP-BX/BS because they accepted me with no questions asked and covered all my heart related issues for years.

Mayo Clinic is a BX/BS Preferred Provider so all I had to pay out of pocket for a very thorough consult with plenty of testing, my ablation, my hospital care and my follow-up care was $5000, which is our "catastrophic coverage deduction". There is no way, especially with the traveling we had to do to get there, that I could have afforded to go to Mayo in any other circumstances. I don't know that Mayo is any more expensive for this than anyplace else, but they are certainly more thorough than a lot places I researched so I'm sure there were more tests than some places might have done -- but well worth it as they discovered I had a small pericardial effusion which was probably the cause of the recently developed chest pain I had begun to have with my episodes of SVT that, in part, precipitated my decision to try the ablation.

BTW, Mayo is said to be excellent for their dysautonomia care. Have you tried negotiating with your insurance company? Sometimes if you can show that you could get the best care and/or care that might save the insurance company money in the long run (i.e. one expensive ablation versus many expensive trips to the ER for the next 10 years) some companies will cover out of their usual prescribed providers. Although I had only that one experience at Mayo, I really was so impressed at the care I received there. Without exception from the receptionists, to the nurses, to the doctors, the care was top quality and it was delivered in a truly respectful, kind and compassionate manner.  
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