tunnie Posted April 25, 2005 Report Share Posted April 25, 2005 Anyone develop symptoms after they had a cardiac ablation? I had an ablation one year ago for tachycardia and my life has been difficult since....cannot even work now. In retro, the doctors think that I had POTS and that the ablation made the symptoms much worse. I am interested in hearing if anyone else has had a similar experience. If anyone had an ablation, did your symptoms eventually get better? Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 25, 2005 Report Share Posted April 25, 2005 OOOOOHHHHH Tunnie! The exact same thing happened to me. I had my ablation in 2003 and am on disability now. All it would have taken is one short call from my electrophysioligist to a specialist and they would have said , NEVER do ablation on ANS people! It's the only way we have to compensate. I have not gotten better, only worse and now my bp has dumped too, so I always feel awful. My pcp and hubs feel terrible because they sort of pushed me into it, but I blame it on the cardio, because he KNEW it could make things worse. I am really sorry this has happened to someone else. And I wish I could tell you I was better, but I am just not. I always tell everyone on here to be very careful about ablation. It has it's place but it's not the potsplace. Has your pulse slowed down? Mine got even worse for awhile, then it slowed down and now I can't even get it past 70 or so, even if I do too much. I feel like I need a pacer to speed it back up! And I have a lot more arrythmias. Tell me about your symptoms....morgan Quote Link to comment Share on other sites More sharing options...
khudsonwv Posted April 25, 2005 Report Share Posted April 25, 2005 I know exactly how you feel - heart rate was raacing to 255 bpm so i had a total of 10 ablations - 1 in one procedure and 9 in the next... this was prior to being diagnosed with POTS - ANSD.. I felt horrible after it and thought i was going to die... I would drop to 40 bpm with BP of 70/40 ....turns out it had put me into complete heart block and we did the pacemaker insertion a lil less than a year ago... still feel bad - heart rate cant drop below 60 now but still wants to run up and down (weird feeling) - now on total disability --- ablations are definately not the way to go -- I thought it would be the answer and learned to be careful what I wished for!!! best of luck - hope you start feeling better Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 25, 2005 Report Share Posted April 25, 2005 They ablated me 27 times! It was awful, 7 hours long. I think at the rate I'm going I'll be needing a pacer before long. The highest my rate ever got was 200. But my BP was sky high too. Now that's in the dumpster too. It makes me so mad and sad. morgan Quote Link to comment Share on other sites More sharing options...
tunnie Posted April 25, 2005 Author Report Share Posted April 25, 2005 I am having a difficult time trying to figure out how to do the replies. Not always as computer savy as used to be and new to this system.I am sorry that you are in the same situation as I....it is difficult. I think it will be helpful to exhange info though.My symptoms now are weakness and muscle jitters--often very severe. Some days I awaken with it and find myself unable to do much until afternoon.....slow thinking processes go with that. My pulse and blood pressure tend to run low though are still in safe zone...BP frequently drops with change of position. Will drop as low as 78/50s. Pulse does not race since ablation.....what do you mean when you say you have been ablated several times?I drink water like crazy, take salt pills, am on mestinon and inderal. The latter is new since last week when I was over at Mayo Clinic in Rochester. Am on medical leave from work. Quote Link to comment Share on other sites More sharing options...
tunnie Posted April 25, 2005 Author Report Share Posted April 25, 2005 Gosh--ignore this one....was a repeat. Quote Link to comment Share on other sites More sharing options...
JLB Posted April 25, 2005 Report Share Posted April 25, 2005 I am so sorry for all of you. How awful.I must admit, I know very little about CA - could someone explain it to me? Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 25, 2005 Report Share Posted April 25, 2005 Cardiac Ablation is when they put a little catheter through your groin thread it up into you heart, and burn areas they think are causing your arrythmias. Sometimes people have an extra node on their heart that triggers certain arrythmias. There are conditions like Wolff-Parkinson-White, svt's, and now atrial fibrillation, for which ablation is very helpful. However, these are problems that ORIGINATE in the heart itself, so when you ablate and stop these, you tend to feel much better. However, with OI, the problem does not originate in the heart, but the ANS system, and it's a compensatory thing your heart does to try and fix the BP and stuff. It gets tachy to try and keep the blood pressure up, or when you are getting adrenaline rushes. If you ablate that and take away the heart's ability to beat faster, you take away the compensatory mode you have to deal with your ANS system. So it typically makes you feel much worse than you did before, if that can be possible. I was ablated in many areas 27 times trying to get my heart to slow down. It was going at 200. So they just kept burning and burning. It finally got slower and they stopped. For awhile I kept having break through stuff and now my heart just seems to be getting slower and slower. And my BP lower and lower. I do not know if the two are connected and the doctor who did the ablation asked me to discharge myself from his practice, as he didn't like my attitude. But that's a different story.... I am very very weak, have tremors a lot, more digestive stuff, more dizziness and get light headed now. It totally *****. Tunnie, were you ablated for IST? morgan Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 25, 2005 Report Share Posted April 25, 2005 Sorry again, that was not a swear word! I promise, I don't know why it filtered it! morgan Quote Link to comment Share on other sites More sharing options...
tunnie Posted April 25, 2005 Author Report Share Posted April 25, 2005 Morgan, I don't know what IST is? They said it was AV Nodal Re-entract Tachycardia....meaning there was an extra pathway causing the tachycardia. It is my impression from a doctor that I spoke with last week that you cannot mess with the nervous system that way without causing problems....for anyone, but in particular for people with POTS.I wish I had known what was in the literature before my ablation. It is contraindicated in most people with POTS.Are you able to work outside the home? Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 25, 2005 Report Share Posted April 25, 2005 Nope, worked a 14 hour day the 17th of March, had the ablation the 18th and never worked again. I've lost a lot of cognitive function. I was a nurse and coyld never do that again. They said I didn't have an extra node, but I did have an abnormal area. But they couldn't get to it all as part of it went over the back side of my heart. IST is inapropriate sinus tach. My diagnoses was Ist versus Atrial tach. On my report he said there were variable spots in many areas, so not sure what he meant. those reports are an interesting thing to figure out. Anyway, I got so much worse and then my primary got a report from David Robertson that stated never do ablation on OI patients. He's been very guilt ridden ever since as has my hubs, but I still feel it was the cardiologists job to figure this mess out. Once he got his 20,000, he was done with me, except he also wrote and said he felt I was permanently disabled. morgan Quote Link to comment Share on other sites More sharing options...
tunnie Posted April 25, 2005 Author Report Share Posted April 25, 2005 Oh gosh, ditto. I am a nurse too. I thought you might be by the way you explained the details. My cardiac electrophys. is uninterested and my primary is also feeling guilty because he encouraged as well. I did hit the literature before the procedure but did not find what I now know. I am very angry with the cardiologist....it was his job to know.Given our circumstances, do you think it is realistic to plan on returning to work? You said your cognitive function has been compromised, would you share to what degree? I used to work high-level nursing management with multiple responsibilities, now I can only manage one thing at a time that requires intellectual processing....and then only on good days. I used to work high-stress area and now the phone ringing can send me into a flush and cold clammy response....other times I am fine. It does make you feel like you are crazy....or at least it makes me feel that way. Any words of wisdom? Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 25, 2005 Report Share Posted April 25, 2005 For myself, I don't think I will ever be able to go back to work. Looking back, I realize I was having pretty bad problems for awhile, and was job switching quite a bit. The stress just killed me off and I couldn't figure out why. Now I know, but at the time, thought I was just losing it. I have a really hard time remembering things that should be easy. I used to be an excellent speller and now sometimes can't spell the simplest words. I go through every post before I post it and still miss a lot of stupid mistakes. If my husband or son is talking to me, I find that I only get about half of what they are saying before I have to ask them to start at the beginning and repeat. It's very frustrating for me, because I used to be very organized, and competent. I worked in NICU and wouldn't even consider it ever again. Actually this last year I didn't renew my license for the first time in 30 years. As a nurse maybe you can understand how that affected me. It was awful.I do have some fair days, but they seem to be fewer and farther between. So, no I don't expect I'll work again, and my health will put us on the street. My hubs works 60 hours a week just to make ends meet. Disability is good to have, but it's sure nothing to write home about compared to what I made when I worked. We were always a two income family, so it's been a real struggle. I used to think it would be so nice to not have to work and just never worry about it. Now I don't work, but feel it's a real success to get in a shower and fix dinner. How ironic. Even if I felt better, I wouldn't have the money to do anything. Be careful what you wish for I guess. This must be be a real downer for you, sorry. It may be really different for you. I'm not a spring chicken anymore either, so that makes a difference too. Hope it goes better for you Tunnie, and I totally agree, the cardios should be answering for this, not our poor pcp's who are really the ones trying to help. morgan Quote Link to comment Share on other sites More sharing options...
tunnie Posted April 25, 2005 Author Report Share Posted April 25, 2005 Hey Morgan, Thanks for all the responses. I'll admit I am overwhelmed and will probably disappear for a while. I will keep you in my thoughts......one day at a time....it is the best we can do. Tunnie Quote Link to comment Share on other sites More sharing options...
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