Ablation/scared!!

[CFS56]

I ended up in the hospital again for afib last month.  Changed my meds, added calcium channel blocker to my beta blocker and I was doing well.  Last week I ended up with hives, swollen face and hands.  Took me off ccb and upped my beta blocker. They wanted to put me on an antiarrythmic but I refused.  They scare the crap out of me. Anyway, went to EP today and they are scheduling me for an ablation for the afib and svt. It will proably be in 6 to 8 weeks, they are very busy and are that booked up.  In the meantime, I have to go get a CT to see my pulmonary arteries, blood work, etc.  The more I think about it the more scared I get.  For afib, don't they have to puncture your heart to get to both sides?  That freaks me out.  And the idea of being on anticoagulants while they are poking holes in my heart, freaks me out even more.  I am not sure I can do this..I can't imagine myself walking into the hospital willingly.  I know that this is basically my only option if I don't want to be on antiarrythmics and live what's left of my life being afraid to do anything because of what my heart might do.  I can't even imagine what it would be like for that fear to be gone.  I am just so scared about doing this.  Any encouraging words or advice would be appreciated.

[researcher09]

You go to profile by clicking on your own name.  Once you get to that, you will see on the top different buttons and one of them is messages.  You will see my messages there and it works just like an email account so you can reply and so forth.

[Eliza12345]

Where would I find your email researcher?

[researcher09]

Hi Eliza, hope you are feeling better but it sounds like you are not from the other posts.  I sent you an email with some details.

[Eliza12345]

I find your comments to be very informative. Could you tell me more about what you had done and your condition? Do you know anything about how important it is to stay on medications after ablation (I cannot take them....severe gastritis from them)  and also the hybrid technique? My EP said chances are likely I would need at least one more ablation and sounds like more. I'm very discouraged. Would love your feedback.

[researcher09]

There is a lot of technical jargon involved in arrhythmia and it is important to understand what the jargon means.  It remains that what you experienced cannot be compared or useful to Eliza.  Your EP burned a line next to your mitral valve to disconnect your AVRT circuit.  Nothing in comparsion to where Eliza's ablation occurred, PV, posterior wall, perhaps mitral isthmus, perhaps the roof and perhaps the LAA.  If those terms confuses you, then I apologise but it is important in understanding why she has appetite loss whereas you don't.  Telling her you came through in flying colors if you had the same procedure is one thing.  You didn't have the same procedure period.

Regarding the other thread that you referred here - http://www.medhelp.org/posts/Heart-Rhythm/Post-AVRNT-Abalation---Planning-Pregnancy/show/2756463#post_13321564

I don't know Dr Natale well but I do know him and exchange Q&A by emails on occasion.  You can read patient reviews for him at the AF forum.  I am sure he was only consulting in this case as he doesn't handle SVT ablations.  He only goes to CPMC once a month or so to handle the most complex cases.  He trained the others there.  I hope things end well with her there and Natale may have to take over the case to get her there.  Most of his clinical time is spent in Austin.

[researcher09]

You could use any description you like but it doesn't change the fact that it is WPW which is the general description including AVRT.  So now we know you had the common form of AVRT.  So what?  Does that make your procedure the same as a persistent AF ablation procedure with the same complications?  You seem to be telling people that because your ablation was a piece of cake that they should expect the same.  The only in common between your procedure and an AF procedure are femoral access, transseptal puncture and pacing.

What in your mind makes you think your disease and ablation is anything like Eliza's?  I am curious.  Even amongst persistent AF patients, there are significant differences in where the triggers are beyond the pulmonary veins.    

[tom_h]

Just for the record.  It wasn't Wolff-Parkinson-White.  It was Orthodromic Circus Movement Tachycardia.

Your post above filled with assumptions.  You assume that I had WPW, and I didn't.  Do you know how long I was in the cath lab?  Do you know how many burns were made during my procedure, as well as the precise location where they were made?  I don't see the reason why you needed to expound on the obvious vast differences between my procedure and the OP's other than being just plain 'ol confrontational.  ....and if you want to go there, dude I'll play.

[researcher09]

Your left sided pathway was in the unlucky minority of people with WPW.  Still your ablation didn't involve the posterior wall and required a few burns compared to Eliza's persistent AF that required a lot more ablation work and lengthier procedure.  WPW ablations are pieces of cake in comparison to AF ablations, both in terms of success rate (high 90s% compare to 50-high 80s% depending on center) and complication risks (1-3% compared to 2-9% depending on center).  AVRT to persistent AF is like spelling to writing..  

[tom_h]

"......Tom's SVT ablation involved only the right atrium so it does not affect the esophagus which is located next to the left atrium posterior wall....."

No it didn't.  Mine was totally left atrium AVRT.

[researcher09]

Regarding the loss of appetite, your esophagus may still be irritated by the ablation so may have been prescribed PPI meds to help it heal.  Also, it may help if you completely avoid fatty foods and oil.  This topic was covered a while ago at the lone Afib forum.  Tom's SVT ablation involved only the right atrium so it does not affect the esophagus which is located next to the left atrium posterior wall.  Since you were persistent AF, your EP probably had to ablate more extensively to get at all the triggers and it probably involved ablating the posterior wall.

[tom_h]

I've only had one electrophysiology procedure and ablation myself.  I had it done 5 years ago at the age of 60.  It was done for near life-long SVT.  My first episode was at the age of 6.  I started Metoprolol about 10 years ago in an effort to stop my ever increasing episodes of SVT.  It didn't work.  BUT, it did do a good job of controlling my mild hypertension.  So even after my ablation, I remained on it, and do so today at 75mg per day.

I did not have a problem with my apetite following the procedure.  On the contrary.  I was munching on a chicken salad sandwich within an hour of waking up. With my bed raised just enough so I could swallow!  I had what seem like a 50lb. pillow on my groin because I must have been bleeding a little afterwards.  That led to an orange-sized hematoma that burst the following day at home, draining into my thigh.  Looked up "hematoma" on Wikipedia, and it looked just like that except on the I side of my thigh.  That was about the only "compilation" of the prodedure.

You have to remember that you are on a very serious cocktail of anti-arrhythmics. These must be taken with caution, and they carry risks just as procedures do.

[Eliza12345]

Hi tom......I too Had the general anesthesia and would not do it any other way except for that darn throat thing!  You seem to know an awful lot about all these procedures and great support and information to give.  How many ablations have you had and where? Are you on any medications now? I cannot take those awful arrhythmia drugs and calcium channel blockers any longer. I'm scared I will go into afib without them but they have made me very sick for both pre and post ablation.  I still have no appetite since ablation 3 weeks ago.  Have any of you had this problem?

[Eliza12345]

I was put out. I was soooooo nervous cannot fathom any other way to do it.  It is very scary but you will get through it.  No one is bigger baby than me!

[Eliza12345]

I know the fear you are talking about. It's really worse than anything you will go through. My fear immobile so me and I get very anxious and usually than some palms.  I just had ablation three weeks ago. Stopped taking my meds after the ablation because they were making me so sick.  I pray I can stay off of them. Any questions you have about ablation I'm here and with support.

[researcher09]

4-5 per week is plenty and on a rate of 1000 for the whole year is excellent  I don't think you have to worry about their experience and skills level.  You should get comfortable with the idea of him tackling both the RA and LA arrhythmias in one go.  He is acting in your best interest and will be doing his best for you.  Best wishes for a procedure well done and rapid recovery.

[CFS56]

I think yesterday during the appt with the EP I was so overwhelmed and freaking out, I didn't ask a lot of questions that I need to ask.  I am going to call Monday and ask the list of questions that I have and I'm also (thanks Tom) going to tell them I want to be completely out for the procedure.  I think I am going to ask too, about just going for the SVT right now.  I am 60 years old and that has tormented me since I was in my mid 20s.  I just dealt with it for 30 some years, didn't have an episode I couldn't stop or didn't stop on it's own until I was in my early 50s.  Then I got to ride in the ambulance and have adenosine, which stopped it immediately.  The afib started in Sept 2009 but thankfully, I've only had 3 episodes that lasted long enough for me to go to the ER.  I have probably have more SVT runs than afib.  
The EP that I saw is very experienced.  He has been doing ablations for 20 years and he averages 4 or 5 a week.  I think he said the hospital has done close to 800 so far this year.  I did remember to ask that.  
Thanks for the encouraging words and I'm sure you will be hearing from me before the procedure with more freaking out.  Hopefully, I won't let my freak outs stop me from doing something that can totally give me my life back.

[researcher09]

It is actually a good sign that the ablation labs are  booked up and busy.  That indicates the center does a high volume of procedures and the EPs are experienced and in demand.  The transseptal puncture is done routinely and it is a piece of cake for centers that do a lot of left sided ablations.  So don't worry about that.  Often times, AF involve both the left side and right side (SVT, flutter usually) so you want them to do the complete job and not a partial job that doesn't hold up.   The heparin is to minimize the risk of a clot forming during the procedure and causing a stroke.  It can be reversed quickly if severe bleeding complications occur.  It sounds like you are at a good center for your procedure.  Trust your EP.  Just make sure he has grey hairs and not a young guy in training.  Best wishes for a procedure well done.

PS - What is the hospital if you don't mind sharing.

[tom_h]

The transseptal puncture is routinely performed during an exploratory electrophysiology procedure.  While I can't say for sure, I would imagine that the right side is thoroughly examined and if something is found, is ablated and then tested.  If the problem is eliminated, I would think there would be no need to proceed to the left side.  The use of Heparin is for your safety.  It prevents blood clots from forming at the puncture site.  Heparin has a very short half life and is gone in a matter of a few hours, so the really nothing to worry about.  I experienced both during my procedure for left side AVRT.  I was under general anesthesia..... that was good!

If you're fearful, you need to express this to your physician PRIOR!!! to the procedure.  You can't do it the day of.  If they need to line up an anesthesiologist, they need time.  So you must do this ahead of time.  If OK to ask a lot of questions.  I refuse to be led by the hand through these things without asking questions. I found that knowing just a little of the basics, often changes the physicians attitude towards the patient.  "We fixed you up" becomes, "We found AVRT in the left atrium near the valve.  I made a series of 18 burns across a wide conductive area of muscle"  So don't be afraid to ask question!  Tell them you are really freaked out, and would like to be sedated as much as possible, and see what they say.  Good luck!

[MichelleP_3811]

You state you have svt too?  How old are you?  I wonder if they just try to treat that if your afib would resolve?  A lifetime of svt can have adverse effects on the heart but once cleared up can give the heart a chance to fully heal itself.  So how often do you get afib and how often do you get svt episodes?  Maybe take a cautious approach and work on the svt first if you are too frightened of having the afib ablated.  This said, if you get afib a lot then it may be too far gone for your heart to heal from it and ablation for it sooner rather than later gives you the best odds of the ablation working.  The longer you wait the more permanent it gets.  Try to not be frightened.  Ablations are really very safe compared to other medical procedures.  It sounds like the EP you are seeing is fairly experienced based on how busy he is so try to remain calm and positive about it.  It's a good thing to try to give your heart the best chance to recover fully.  Please keep us posted when it is and we will keep you in our thoughts.