Ablation - the real scoop

Ok, I have posted before, recently. Give me the real scoop on Ablation. I feel like I need to have all the info, right now. Dr increased Toprol XL for the 3rd time because I have increased heart rate. Let's, for conversation, call it inappropriate sinus tachycardia because that's the closest I've gotten to a diagnosis and my doctor is a quack (yes, I'm in the process of finding a new doctor and a second opinion).

Nurse called today to say that the last of the tests came back today, all normal. I was hoping for a definite cause for all of this. She asked how I was doing, I explained that my HR seems to slow down a few days after the increase, but then my body seems to compensate for the medication and increases anyways. She said that the doctor had mentioned ablation and that I could make an appointment to come in to discuss that further with him. I said at this point I wasn't ready. She said it really was just when the symptoms (palpitations, low energy, short of breath) became too much of an interferance with my life that it may be a good time.

SO, you all are the most educated in all of this. I joined this site because when the doctor mentioned this last week, he immediately said that a pacemaker would go in as well. Perhaps he did that (as I have learned after reading up on it ) as a way to let his patients adjust to the thought of a PM, but I don't know.

SO, explain to me how long you are in the hospital (I'm in the US), what is recovery like, what are my chances of a PM, do many people really have to repeat the ablation? ANYTHING ;) Thanks, Joleen

13 Comments

ablation

by Alma Annie - 2012-07-17 08:07:14

Hi Joleen,
I have had 2 ablations here in South Australia. I had to sign a form agreeing to it and understanding all complications that MAY arise.

I was not sedated the 1st time as EP wanted to find the spot which was giving me trouble, and he did straight away. My carotid arteries hurt like H... when he did the actual burning or whatever it was and I cried out, but was told it was just referred pain and not many people feel that.

My heart rate went from 200 a min to 23. So he would not let me home the next day. The following day I was still not right, heart rate all over the place, so he decided to put in a pacemaker.

I know others who have had an ablation who have been cured and not needed a pacemaker, so it should NOT
be an automatic thing. Check this with another EP. Ask for a 2nd opinion.

I still had problems but not with tachycardia so 9 months later I had another ablation. This time I could be sedated as EP knew exactly where to go. I felt nothing as I was out to it.

My groin was sore for a while after, but ok now. The pacemaker takes a bit of getting used to for some people, including me! My EP/Cardio said " Well you are alive aren't you?" I could not argue with that.

Let us know how you go

Alma Annie

It's about how skillful the EP is

by ldebaugh - 2012-07-17 08:07:26

Hi Joleen,
Have had 3 ablations, a one spot atrial flutter, a pulmonary vein ablation and an AV node ablation. Had a Hopkins doc for the first and a Florida doc for the second and third.

Hopkins docs are brilliant but they don't always have the best in practical skills. The atrial flutter ablation was considered a piece of cake (took about an hour). Not so, it was very painful for two weeks afterward and I was extremely black and blue.

The Florida doc was most gentle, I was under for 5 hours for one (w/4 catheters-neck, wrist, groin and urinary) and 4 hours for the second he did. No bruising, no pain, just sore and achy in recovery. Also on the AV node ablation he put in the PM. No pain, just a little sore for a week or so. I was out all the next day after getting the PM at a funeral, reception and going to dinner.

So, ask your doctor how many of these he has done and ask what HIS patients experience. Ask him about his skill level.
Good luck!
M'Liz

Thanks

by Joleen228 - 2012-07-17 09:07:21

Thanks, I love this site. All of your experiences are wonderful... although I am still TERRIFIED. I keep looking for more and more and more information, but the truth is I don't like living like I am and I don't want the ablation. Hehe... Was kinda hoping for that magic pill or something. I guess acceptance of one form will come.

AV node vs Sinus Node

by Joleen228 - 2012-07-17 09:07:31

Ok, I've been reading up (on everything I can find) and I know I'm looking at this like a blind man decorating a wedding cake, but the doctor was talking about the ablation and a pacemaker, but he never gives me much information. I think I will call tomorrow for more information. But, I see that some sites discuss the AV Node ablation - which would require a pacemaker, and then there's the Sinus Node ablation which only sometimes requires a pacemaker (if I'm reading that right). What's the difference and do they have different symptoms?
Joleen

Information is always helpful

by Joleen228 - 2012-07-17 10:07:22

Thank you Jessicya, and yes, information is always helpful. Everyone is giving me way more information than my own doctor. Thank you, very much!! It does give me some peace of mind. I still don't know what I want to do. My HR has been ok, but I've been inside the AC all week. Heat index is running 110+ for the next few weeks. I'll know for sure how everything is running tomorrow when we do errands in the heat. Thanks again!!!
Joleen

Hope this helps

by jessimay - 2012-07-17 10:07:35

I had one last July, September, December, This March and May. I also had an epicardial ablation December.

They were all a walk in the park. I was put to sleep for all of them because I was under for about 7 hours each time. They did a lot of mapping. When you wake up you have to lay completely flat for several hours. That was honestly the worst part. I heard you can go home same day but they always kept me overnight for observation. After that you can't squat or lift heavy things for a few weeks. I recommend you stay off your feet for a few days and have everyone cater to you. If you put too much pressure on your legs you will get bruises where they put the catheters.

Mine were all for the sinus node; it was very robust. I had IST so bad that for three years my heart rate never went below 100. Each ablation my resting heart rate got closer to 100 and the high heart rates got lower. With the last one they burnt everything in my atrium. I was then in junctional rhythm that was 60-100 and they left me. I got the pacer a month later because I couldn't handle not having my atrium beat.

Like I said I will have 5 more of them. It was so much better than being on meds. I did have a few complications here and there but it was nothing too serious.

So the sinus node is what makes your heart beat, it's the jump starter. It's the natural pacemaker. It is made up of a bunch of cells that put out electricity. It can just be one cell that is taking over and causing the IST or just a few. I highly doubt you will be anything like me. My doctors at Mt Sanai and NYU are world renown and they've never seen IST anywhere close to as bad as mine. They use a balloon tool and it finds all the spots that are over active and zap them. The only way you would need a pacer is if the wipe out everything at once and I doubt a doctor would do that the first go around. I think they tell us about the pacer and possible side effect. With people who have sinus node dysfunction, where the sinus node isn't working too well they usually develop an escape rhythm. This is when some other place in the heart does the jump starting. It is all safe.

The AV node is what connects the heart from right to left. The sinus node beats then it goes through the AV to the other side. If they take out the AV node it is impossible for the left side to pump. That is why a pacer is a must. If you just have IST they most likely will not go anywhere near the AV. They only do that if you have a re-entry arrhythmia. As far as symptoms I don't think you would be able to feel them. It all comes down to your EKG.

That all being said keep in mind everyone is different. Unfortunately there is no exact answer until they get in there and see whats going on. They usually go in and map and find whats wrong and ablate it. If they can't find anything they wont.

I know that was a lot but I hope it helps! Ask me anything if you need.

That is the question... ;)

by Joleen228 - 2012-07-17 11:07:25

Yes, Jax, you are right. I have read everyone's posts, and other posts from other sites. I've been reading journals from 2005 and more recently as well. There are statistics even up to 25% that end up with a pacemaker after the ablation! In one study even more ended up with complications! And yet, other sites state something like 1% chance of a pacemaker. I see many people saying that the ablations are more of a 2-3-4 times before something starts getting better and I'm thinking after that many times you are ASKING for a complication, what am I gaining!! I'm in the "this sucks and I'm going to pout about it" stage....

To ablate or not to ablate

by Jax - 2012-07-17 11:07:36

That is something I struggle with. I have a pm and afib. My afib is TRYING to be controlled with meds...so we'll see. I'm also trying some nutritional supplements as well. There's a book out there...go to afib.com. The book is by Steve Ryan and it's very interesting. The thing about ablation is that there is no predicability. It may work...it may work for a few weeks, a few months and then it's back. So you go for another ablation. Sometimes it leaves you with permament afib...and sometimes it leaves you with another heart rhythm. There are complications (but rare) as well. So... you can't get too much info. Everyone has to make the decision for themselves. It just helps to be informed.

The pacemaker isn't the issue

by ElectricFrank - 2012-07-18 01:07:57

If the only complication of an ablation was getting a pacemaker it would be trivial. The pacer is easy to implant and provides a substitute for the functions lost from the ablation. I've had a pacer since 2004. In my case I have a natural AV "ablation" otherwise known as AV block.

For me the real downside to the ablation is that it involves destroying heart tissue in the hope of eliminating the source of the offending arrhythmia. If things don't go as planned there is no reversing the damage. I also wonder what the long term effect will be from the scar tissue of multiple ablations.

Fortunately, I haven't had to make that decision. I would have to be in a position of facing severe disability before I would accept it.

frank

I hear you!!

by Jax - 2012-07-18 01:07:59

I completely agree with you. If seems as though when you have afib...even though they ablate...the heart finds other areas to create the afib...I don't know if it's worth it. There are some people who are cured...but they are the lucky ones....usually I'm not so lucky. Living with afib however, is a challenge....it's very annoying and I'm sure not what it does to your heart. So...it's a real toss-up.

Decision time

by IAN MC - 2012-07-18 08:07:01

Hi Joleen
In a way the decision whether or not to have an ablation is an easy one. The big question to ask yourself is:-

" Can I carry on the way I am now taking anti-arrythmia drugs, blood-thinners etc with the level of health and the life-style which they are giving me ?

If the answer is "Yes" don't have an ablation

if the answer is " No" and the Dr has run out of drugs , then go for the ablation and the promise of a permanent cure. The chances of you ending up much worse are slim.

The big, big, BIG question is " Who does the ablation ? "

I was firing questions to the referring cardiologist like " If you had to have an ablation done on yourself, or your wife who would you choose to do it ? " . I was making statements such as "my heart is very important to me I want the best man in the UK doing this procedure, I won't settle for less ! "

You, the patient, have to drive the process; it is your heart and it's the only one you've got.

Eventually I got down to two names in the UK . I then did researches on their age, length of experience, published papers , hospitals where they had worked,success rates etc etc .

Finally I met the man himself. He filled me with so much confidence ! He did it very successfully !

I have since spoken to technicians who assist with ablations . They have all said that there are Drs doing ablations who they would NEVER go to themselves.

I firmly believe that your selection of the Dr to do your ablation is one of the most important decisions you will make in your life.

Good luck

Ian

Good suggestions

by ElectricFrank - 2012-07-19 12:07:28

The one additional thing I ask on any procedure is what the actual absolute risk is in real numbers.

As an example we are told that the risk of a serious complication from a colonoscopy is very low, or slight. When I've asked for actual numbers I get the answer that it isn't possible give anything like that. Then I get on the internet and find that there is plenty of research on it and the numbers have stayed the same for years. They are steady at 1 in 1000 to 1 in 2000. As I've pointed out before would you consider it low or slight if the airline you were about to take off on had a record of 1 of 1000 flights crashed. I have a better record than that as a private pilot in a small plane.

I totally agree with Ian that the Dr is the most important part of the process. A scarey thought is that for every top doc who is exceeding the average there must be another doc who keeps a hearse waiting for the body. LOL

frank

DR's don't give much info...

by donr - 2012-07-20 08:07:27

...because they don't have the time. Harsh reality. Fortunately we exist. Consider all the time that has been taken, collectively, by everyone who has responded, and all the different info that you have collected from them. For a cardio to impart all that would take a prohibitive amount of his time. Besides that, the general principle of medical practice is to tell patients just what they think they can absorb/HANDLE! I'm not sure which is more critical. Get a patient who cannot handle info w/o freaking out & you have a real problem on your hands.

Sounds like you can both absorb & HANDLE a lot - congrats! Actually, Dr's enjoy having patients like that - IF the Dr. is any good!


Besides, he doesn't know your level of understanding & doesn't want to spend the time talking to you to develop that important bit of data.

This has been a very good thread for educating you. Take it all in, develop a list of discussion points for the Great Man & NOW have the discussion you really want w/ him. If he cannot handle that, get a new Cardio!


Oh, BTW - I learned something new from this post - you can get a PM implanted at a funeral - see last sentence, third para, 1st comment by ldebaugh. It's amazing what a missing comma can do to context/meaning!

Don

You know you're wired when...

You play MP3 files on your pacer.

Member Quotes

A properly implanted and adjusted pacemaker will not even be noticeable after you get over the surgery.