ablation

[pengi07]

my doctor wants me to have ablationis it ok with dysautonomia.

[Heiferly]

It's no problem.  I generally take breaks from my "work" on MedHelp when I'm that ill, but I do try to keep an eye out for urgent posts if at all humanly possible, and yours seemed like it warranted an urgent reponse, at least as much as I could muster in my condition.  I do understand that sometimes there's a time component here and I wasn't sure how soon your ablation was scheduled and wanted to make sure you had at least some answers ASAP.

I'll try to add a bit more today.  Here is some more information about your diagnoses that may be helpful to you.

PAF (pure autonomic failure):

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4790

http://en.wikipedia.org/wiki/Pure_autonomic_failure

http://www.merckmanuals.com/home/sec06/ch098666/ch098666d.html


Syncopal episodes (i.e. syncope, which is the medical term for fainting)

http://www.medhelp.org/medical-information/show/512/Fainting

The following URL is a direct link to a pdf file.  The medical journal article will download to your computer as soon as you put the URL into your browser and hit enter.  I just always like to warn people of that when I link directly to pdfs so they don't think something is going wrong.  I apologize, but I only have the direct link for this one unless you want an html view version, which loses the formatting and is very difficult to read (and at least for me, gives me a headache if I even try.)  But it's an article by one of the top experts on the subject, so it's really worth posting here or I wouldn't bother.

http://www.jasoncartermd.com/resources/pdf/Neurocardiogenic%20Syncope.pdf

http://knol.google.com/k/syncope-fainting#

http://circ.ahajournals.org/cgi/content/full/circulationaha;111/22/2997


When you say you are going to have a table test done, I believe you are referring to a Tilt Table Test, which is sort of the "gold standard" test of many autonomic disorders.  Here is a bit of info on that:

http://www.cmaj.ca/cgi/content/full/164/3/372


As for the ablation, I hope you will not be too fearful if you decide to go forward with it.  I decided to have an ablation myself, but never ended up getting it, strange as that may seem.  They scheduled me for the EP (electrophysiology) study and ablation as one continuous procedure and said they would decide for certain whether to go forward with the ablation based on what they found during the EP study.  So I had to consent (or not) to the ablation beforehand, just in case.  I decided to tell my doctor to go ahead and do whatever he thought was best once he saw what was going on (so basically, go ahead and do the ablation if needed).  They went in through veins on both sides of my groin for the EP study and I was on the table for between 4 and 5 hours if I recall correctly; it's been a few years now, but I do remember that it was longer than they'd anticipated and my mom was freaking out because it was such a long wait!  I opted to have full general anesthesia for it, which is not their usual procedure ... I think they normally do it under "twilight anesthesia."  You may want to discuss with your doctor what level of anesthesia will be best for your case.  When I finally woke up in recovery, I learned that they were unable to produce the arrhythmia they were looking for during the EP study, so they decided not to do the ablation after all.  I think in my case, it worked out for the best, but I think for those who need them they can really be a blessing.

Recovering from surgery always seems to take us dysauto folk just a wee bit longer because we've got so much going on with all of our other symptoms, but I've had quite a few surgeries since falling ill with dysautonomia, and I always bounce back eventually!!  I'll be keeping you in my thoughts and watching for updates on what you decide to do and how everything goes for you.  Keep us updated if you can!  Great to meet you and welcome to our community!!!

:-)  Heiferly.

[pengi07]

oh im so sorry to here your not well your so kind to respond to me when your ill i do wish you better thank you so much for the advice im really gratefull to you and wish you a speedy recovery take care from pengi07.

[Heiferly]

I apologize because this question merits a very detailed explanation which I am unable to give right now because I had surgery earlier this week, then landed back in the hospital overnight to be treated for complications, and have been replying to you from bed on my cell phone. Even now that I'm at least in my own bed at home, the pain medication is dulling my thoughts and it's hard to type on the tiny phone screen.

Until I'm able to respond better, here's what I can tell you:

Your diagnosis (PAF, or pure autonomic failure) is not POTS (postural orthostatic tachycardia syndrome), and moreover, has some essential differences from it that make it highly unlikely that research regarding heart rate in any manner would generalize from POTS to PAF.

I am not a doctor, but I can at least tell you that you're not in the group of patients with dysautonomia for whom ablation is contraindicated, which makes it that little bit more likely that they're giving you a good recommendation for your case.

You may also want to post in the Heart Rhythm community here on Medhelp, as they may have more insight into/experience with ablation with your particular arrhythmia.

Click on the link at the top of this page that says Health Pages to go to the Neurology Health Pages where you will find many on dysautonomia-related topics, including our "Further Reading" page with links to articles about different types of autonomic disorders.  

Hope to talk with you more soon,
Best,
Heiferly.

[pengi07]

hi there thanks for getting back to me i was in hospital a few days with my heart and was put on a machine and during the night i had bad palps. i have to have more tests done but on my discharge letter it has PAF with syncopal episodes and  paroxysmal artrial tachcardia i dont know what all this means i just take the meds they give me and waiting for ablation but im so scared as i dont understand it all im waiting for a table test as well do you know what POTS means im not very clever at all this medical stuff thank you again take care.

[Heiferly]

It really depends on the type of dysautonomia you have, as well as on a case-by-case basis. It is contraindicated in many cases of POTS as studies have shown it actually worsens symptoms for many POTS patients. But there may be other mitigating factors such as a diagnosis of dangerous arrhythmia on top off the POTS.

What is your specific diagnosis, and what test/tests were used to confirm this?

Do you have a heart rhythm disorder diagnosed on top of autonomic dysfunction?

What is the goal of the ablation, and where are they planning on targeting (i.e., your SA Node or something else)?

If you answer as many of these questions as you're able (no worry if you can't answer them all), we might be able to better answer your question.

Thanks,
Heiferly.