shayden Posted April 5, 2004 Report Share Posted April 5, 2004 I went to the Doctor today and he has recommended a EP with Radiofrequency catheter ablation. Have any of you had this procedure? If so, can you please tell me your results?He is recommending this due to severe tachycardia with syncope.Thanks in advance for your help!Susan Quote Link to comment Share on other sites More sharing options...
Sue Posted April 5, 2004 Report Share Posted April 5, 2004 can you tell me what that is??Sue Quote Link to comment Share on other sites More sharing options...
calypso Posted April 5, 2004 Report Share Posted April 5, 2004 I have been told by my cardiologist and neurologist that ablations do not help those with POTS, only those with inappropriate sinus tachycardia. Basically the ablation gets rid of the tachycardia temporarily or completely but you're left with any other symptoms that you usually get with it. I believe one of Dr. Grubb's studies that is mentioned on the potsplace Web site says the same thing. Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted April 5, 2004 Report Share Posted April 5, 2004 Yep, if you have POTS ablations are not recommended at this time. There has been some research out of Mayo that theorizes they may help a very small percentage of patients, but when it comes down to the actual research...well, I'll just send you a link or two and you can read for yourself:(If you read the last sentence it sums it up). http://www.ncbi.nlm.nih.gov/entrez/query.f...3&dopt=Abstracthttp://www.ncbi.nlm.nih.gov/entrez/query.f...2&dopt=Abstract1st paragraph, pg. 11:http://www.ndrf.org/disorders.PDFHere is what is on the POTS PLace "what to avoid" page:Ablations may be detrimental to POTS patients. A Mayo Clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia and postural orthostatic tachycardia features (Shen, Low, Jahangir, Munger, Friedman, Osborn, Stanton, Packer, Rea & Hammill, 2001). However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms. A follow-up evaluation showed no vast improvement in symptoms, despite better heart rate control. A later publication states "in our laboratory, sinus node modification, total sinus node ablation, or atrioventricular nodal ablation is not recommended for patients with inappropriate sinus tachycardia who have autonomic evidence of postural orthostatic tachycardia" (Shen, 2002). Ablations have reportedly been detrimental to some POTS patients who were misdiagnosed as having inappropriate sinus tachycardia. After the apparently successful elimination of their "sinus tachycardia", they were left with profound orthostatic hypotension (Grubb & Karas, 1999).Hope this helps!Michelle Quote Link to comment Share on other sites More sharing options...
shayden Posted April 5, 2004 Author Report Share Posted April 5, 2004 Thank you all so much. Here I was thinking that this was going to be the thing that "saved" me. Thank God I asked here first.Thanks Again!Susan Quote Link to comment Share on other sites More sharing options...
Guest thisblows Posted April 6, 2004 Report Share Posted April 6, 2004 Yep I had one dome in Feb. Twenty minutes after the surgery I was back in tachy! It didnt help me nor hurt me. However, I have IST and not POTS...or at least thats what my doctors think. I passed my tilt table test...but am trying to get my doc to send me to the Mayo Clinic just to be 100% sure that I dont have POTS before I go in for another ablation! I'm not sure if I'm correct or not but I heard that ablations are bad for most POTS people...unless you have a sinus node abnormality that is causing your symptoms. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 6, 2004 Report Share Posted April 6, 2004 You are correct, ablations are NOT suggested for POTS. The tachy is functional with POTS--it's the body's way of protecting the heart, lungs and brain with sufficient blood flow despite the pressure loss.I'd say a 2nd opinion is definitely in order if they're going to have you get another ablation! Nina Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 6, 2004 Report Share Posted April 6, 2004 I had an a sinus node ablation; then needed a pacemaker because of pauses caused by damage to the sinus node; and then about 20 months later an AV node ablation.I had this done before doctors were familiar with POTS. My advise, make sure you are clearly diagnosed with an "electrical" problem rather than an autonomic problem. You don't want to damage your electrical conduction system if you have an autonomic problem. Quote Link to comment Share on other sites More sharing options...
Roy Posted April 6, 2004 Report Share Posted April 6, 2004 I had an ablation procedure done, but I had a SA node problem pre-existing to the POTS. They were affriad to any abalting originaly for fear of making the POTS worse, but after a year of my dx my cardio symptoms were getting much worse. My EP decided to do EP study to make sure. Once inside my heart they found a dangerous and life threatening electrical problem with the SA node. After the abaltion my POTS didn't get better or worse. I still get tachycardia of up to 170 bpm when my body needs to and my resting bpm is 65-70 which is normal for me. They were worried about bradycardia fortunately that never happened. My advice get 2 or 3 opinions. If your cardio problems are that bad or getting worse they can always do and EP study to have a look around to make sure nothing is electrically wrong. My study was supposed to be only a half hour ending up being three and a half and saved my life! I think mine is a rare case. People with POTS should'nt be running to there EPs to get ablations as some sort of cure all. Tachycardia is a natual part of POTS and my heart still gets tachy. Some days are just better than others.Hope this posts helps Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 6, 2004 Report Share Posted April 6, 2004 Well said Roy! And, I'm glad that you got the right treatment for you Yet another example of how, despite the fact that we all have similar diagnoses, each course of treatment needs to be highly individualized. Nina Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 6, 2004 Report Share Posted April 6, 2004 Well put, Might Mouser. An EP study rules out an electrical problem. Be sure to get a good work up for POTS by a doctor well versed in POTS (although they seem to be few and far between).BTW, I don't know how you all cope with getting appointments with your doctors that take a few months to get. What do you all do in the meantime? Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 7, 2004 Report Share Posted April 7, 2004 Please see the reference in the February 2001 issue of Pacing Clinical Electrophysiology that deals with sinus node ablation.The article is called, "Is sinus node modification appropriate for inappropriate sinus tachycardia with features of postural orthostatic tachycardia syndrome."I knew I could find the reference if I really tried.BTW, I know there is a tachycardia that can be helped with EP study and ablation--I think it is called White something or other syndrome. A friend of my daughter who iceskates had this done and voila she is back to iceskating.This goes to show that all cases are different. I guess I would say have the EP study to rule out other causes but have the ablation (if not clear that it can help) at a later time. I did that when I was considering AV node ablation. Good luck and feel better! Quote Link to comment Share on other sites More sharing options...
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