So. 37 M. Paroxysmal Afib with rvr. I have HCM and a family history of HCM thus have an ICD.
Afib has gotten progressively more frequent last few years. Last year I had 5 cardioversions with the last one failing. Scheduled a emergency abalation at the local hospital but i converted chemically with amiordrone.
Few months later i see my EP. He drops the bomb instead of traditional RF ablation I should get a "Convergent" hybrid abalation.
Instead of 2 days at the hospital, its going to be 4. I'll need general anthesia instead of conscious sedation and theres more risk involved due to cutting thru my stomach into my heart from a 1inch incision. This approach includes needing a chest drain tube for 2 to 3 days as well..
Due my HCM (IHSS) and what he said the stiffining of my heart. The hybrid approach has a 70% of success and freeing me afib compared to the 40% of a single traditional RF abalation.
I'm scared to death. The thought of RF abalation was already a terrible thought but now they want to litterally cut into my heart.
Anyone had this done? Is this a drastic first approach to abalation? I'm on my max solotal dosage. When im in sinus Im perfectly healthy. That said. My Afib with RVR is completely unbearable when it does happen. The hospital and EPs, Thorasic Surgeon Im seeing are located at Emory Hospital in Atlanta Georgia.
I just need some insight. I have to trust my EP right? He knows more than I do, right? He wouldn't suggest this if he didnt think it was the best approach, right? Basically two abalations at once eith the intent of not needing a second separate proceedure..
Anyone?
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Pardon my typos. On my phone 3am in the morning. Can't sleep! The EP is scheduling this ASAP. Like in a week or two. Just need to do the preOP blood work and physical. I know its a personal choice. I really feel like I need more reassurances tho. The EPs and surgeons just act like its no big deal at all..
I believe Journey1948 (WashingtonDC?) and johnMiosh have posted on this. Try entering hybrid ablation in the AFA search box above. You can send a PM via the chat link above.
Ya. I've searched and read every thread I could fine here. Just looking for advice. Am I dumb for wanting to go against my EPs recommendation and get less invasive ablation as a first step? He really brought this out of left field. After doing some rrading. Minimally invasive Covergemt is looking like anything but. It's only minimally invasive compared to full Cox Maze procedures.
It is completely understandable you are scared but think you should be reassured by your EP and surgeon making out it is 'no big deal'. It is to you even though it isn't for them but they obviously have confidence. I can't give advice but hope you get the reassurance you need. As you say it is a personal choice and I am sure you will make the right decision. Good luck.
It’s a really difficult decision to make. My approach would be to drill down into what you are afraid of? Is it existential anxiety or something much more specific such as a fear of medical procedures generally? Is it your fear of that is holding you or is there something you really don’t trust that this right for you? It sometimes helps to ask the questions and write them down and reflect (not react).
The question generally you seem to be asking is should I put my trust in this guy to make me better?
Risk : benefit? If it is pre-procedure nerves I think you will have your answer - that’s normal and everyone has those sorts of jitters - I nearly backed out of both my procedures. If there is something lurking that is bigger than that then it is worth spending a little time and energy exploring and researching.
Definitely a little bit of both. Nerves, Fear and the undue stress I'll be putting on my wife and kids with such a proceedure. From what I read. The recovery is a bit harder than traditional ablation. The flip side is the success rates seem to be higher for people with structural heart diesease as myself. I find myself wanting to trust my EP but I know Covergent is a brand name and a technique being push by a pharmaceutical medical manufacturers that sell the actual tool used to make the lesions/ablations. I'm just scared I'm going to make a life altering decision I could later regret.
The cardioversions are bad. I definitely need an ablation. The EP tells me he thinks the risk are worth it. 40% success with a traditional ablation. With HCM. I'll likely need a repeat. Compared to the 70% success rate of this single convergent proceedure.
I've reached out to John in that link you provided. I'm hoping he replies and gives me some feed back. I'm scared to delay too long for a s cond opinion. Last time I delayed i found myself in a local ICU with them wanting to do a emergency ablation.
When I had mine the advisory was 10 days but I flew 5 days after & my EP - with whom I had the discussion with- said depends how you feel as he had patients who cane to London for ablation from Middle East who flew home 24 hours following. I had no problems on 3 hour flight but not sure I would have wanted to do a long haul flight for several weeks.
I have had a version of this, mine was through the side of the chest and done in two parts; check my posts for a lot (too much ?) detail. The epicardial part is much more difficult than a normal ablation. The up-side is that I have been AF-free, apart from a few days within the bkanking period since the op in April 2017 and drug-free from the following November. The ablation included a left atrial appendage closure, and so I am also off anticoagulents.
I was walking a few miles within a week and cycling within three. I am now back to normal, but have dialled my exercise levels back a notch; this is not on medical advice, but I personally decided that my previous lifestyle may make a recurrence more likely.
I have had a few odd readings on the Kardia, but these are nothing to worry about according to the cardiologist. His view is that I have an 80% chance of remaing af-free for 20 years. I think this is over optimistic and not borne out by previous evidence, but I am still very pleased with my situation. I would suggest its worth considering.
I spent the last day reading everything I could find. The "Covergent Ablation" is really just a brand name for a "Hybrid Ablation". Its literally a trademarked name from atricure/nCure, A medical manufacturer who manufacturers the ablation tool used in the procedure. Its only considered minimally invasive when you compared it to the open chest procedures like the Maze/Cox. The procedure is normally only reserved for people who have failed multiple past traditional afib ablations who want surgical results without the complete sternotomy.
The 70% number I was quoted is the standard success after 1 years of people without underlying structural heart disease. Success is measured apparently by less than 30 seconds of Afib. There honestly isn't much data, if any, on the hybrid "converge" ablation procedure on patients with HCM. Not that I have found anyway.
Which leads me to this. RF Ablation is decently studied and well cited in HCM patients. HCM patients like myself, with occasional paroxysmal afib, tend to do much better with traditional cath ablation than HCM patients with persistent or long standing afib. 1 year success rates, off of AAD's for HCM paroxysmal afib patients after 2 ablations are comparable to the general population in the (60% to 75%).
After doing my research, which includes over 20 cited government and medical reports, and spending time with my family. I decided I have too much to lose to be letting people cut into heart. I'm fairly young, 37, Take care of myself and hopefully have many years of life left. If a traditional ablation with a touch up ablation 6 months later can allow me to at least reduce my ER trips, cardio-versions and maybe reduce my sotalol dosage - then the reduced complication rates, reduced mortality risk, reduced hospital stay, reduce cost and overall stress, makes the traditional cath ablation a no brainer for me.
I can always do the traditional cath. If those attempts fail. The hybrid procedure isnt going anywhere and maybe in a few years the technology will improve even more.
On that note. I'm disappointed with Emorys physicians lack of ability to convey the Convergent Hybrid Procedure to me. Granted my normal EP was out of the office that day. It was his recommendation that drove me down this path in the first place. When I asked for details on the procedure. The NP literally gave me a print out with 2 paragraphs of text. When I asked the PA about statistics, her response was "its a routine procedure". When I asked the thorasic surgeon about the hybrid/surgical portion of the procedure. His response was "lift your shirt". It points at my chest and goes "boop". Right there, I'll make a one inch incision. Thats really the extent of the information I left the hospital with. I get it. They likely dumb things down for most patients. I understand these are truly great people, real life super heros that save lives. Some of these people have lived lives I can only dream about. I just feel like they really, really need to work on their patient skills. =-)
I'm calling Emory first thing in the morning. Letting them know I dont want to schedule that hybrid procedure but instead the traditional cath.
Yep, I have an Emory EP also. He's a great guy, but now seems to have so many patients he is challenged to keep up with all their questions and demands, so now he has at least one PA (or NP?). He's been my EP for many years (I'm in mid-70's), many drugs, many cardioversions, one ablation on my flabby L atrium, and now I'm back in afib. Apparently I'm in persistent or permanent afib now and he wants to do a pace & ablate, which scares the heck out of me, as it kills the AV node. I have a million questions, but this corporatized medicine model, and the short hurried appointments, only allow for hit or miss information exchange. So I'm back on this website trying to glean as much info. as possible before I have my meeting with his PA. U.S. medical practice seems to be a wholly owned subsidiary of Wall Street venture capital now. We patients, and our poor doctors, are just revenue generating units!
All I can say is that I've been following your regular updates and commend you for your tough decision which finally was made and you courage. Get well quick and the very best of luck ahead. Daver
Thanks. Talked with a nurse this morning. Suppose to call me back after she consults with the Dr. I see his reasoning with the higher rate of success on the more invasive hybrid proceedure. I just think maybe a more conservative approach is a better path for me.
So. Despite everything Ive read and what the Dr told me Friday. The nurse today told me I didn't have a choice. It was this hybrid proceedure or nothing. Now I'm scrambling for a second opinion. The next closest high volume center is 4 hours away so I'm trying to set that up. I'm also talking with the HCM foundation. Now I dont know what to do. My EP is contradicting everything hes told me and everything Ive read.
Just an update. Three cardioversions in the past month. HCM specialist at Duke had me start on verapalmil. It didnt work. Got a EP app at Duke this week for that second opinion.
So, 5 years later, I had a reply to this thread recently. I ended up going to the Duke appointments. Each time I went, I went into Afib with RVR, that required cardioversions and shocks.
Duke ended up accepting me after a lot of financial hurdles. Dr Wang, a Duke HCM specialist, referred me to Dr Daulbert @ Duke EP. Daulbert recommended a traditional PVI ablation. I went forward with his recommendations. The day before, We drive to Duke, and of course. I go into Afib with RVR. A bad episode.
The Dr decides to leave me in Afib and RVR for the proceedure. It took 4 hours in the EP and he ended up doing twice the ablation he had planned for. The procedure went well. About as well as one could hope.
Almost 5 years later. I'm still on heart rate meds, and Eliquis. I'm doing great tho. What's changed? Knock on digital wood. In the past 4 years. I've only needed 1 cardioversion. If I have any rare afib or palpitations now, it seems to correct itself. I've been able to focus on normal life things like building a business and watching my kids grow.
The real kicker is this. I've taken up climbing and hiking mountains. For the past two years I've been training, doing 15 mile hikes with 5000ft inclines. I no longer need to sit up at night to breath. I can keep up and pass normal people walking up hills. I can even run. It's amazing. The HCM and heart failure symptoms arent gone, but I'm able to do things I could only have dreamed of before.
The ptsd, anguish and everything I went thru is fading, but still present. No doubt that Dr Daubert @ Duke saved my life. I'm trying my hardest now to maintain a level of fitness. I know I'm on extremely borrowed time. I watched my mother die from a Afib induced stroke a few months ago. It hit hard.
My advice to anyone in my situation is to get 2nd and 3rd medical opinions. Go with your gut and try to make peace with yourself and loved ones. Fighting genetic heart disease is no easy battle.
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