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winter01

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Joined: 30 Dec 2004
Posts: 13
Location: Liverpool, UK

Heart Ablation - Wpw Syndrome Posted: 12-30-04 15:28pm


Hi, i was just wondering if anyone can help? I've recently been diagnosed with wpw syndrome (wolff-parkinson-white syndrome, irregular and rapid heart beat, 200 bpm), and as i'm only 20 i've been told I should have an ablation, or be on medication for the rest of my life. This isn't really an option as it's expensive and I get side affects I could do without. So the way I see it is to have the ablation. My problem is just how safe is it? I've asked my consultant, and checked various other places and people, and all I can find is praise for the procedure, though there's a 90% chance of it working, what about the other 10%? Does anyone know what the risks are? What can go wrong, and how the procedure could affect me? To get rid of any worry I have I need to know whats what. Any help would be appreciated.

purple333

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Joined: 01 Dec 2003
Posts: 1420
Location: Sydney

Posted: 01-11-05 10:48am


I'm replying not because I have any specific information but to try to suggest some avenues for obtaining information since you've had no replies. Have you gone to some search engines (google, yahoo, ask jeeves for starters) & put in "treatment for wpw" or natural alternative treatments for wpw" or even just wpw (obviously write it in full not just wpw). Also talk to others with the same problem, is there an association of wpw sufferers? These may be able to provide some advice.

r thiel

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Joined: 16 Jan 2005
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Location: Vancouver, BC

Cardiac Ablation Posted: 01-16-05 23:52pm


I recently underwent this procedure after a lifetime of supra ventricular tachycardia episodes. I have always been able to control duration of episodes until lately, hence the ablation. Procedure was painless, lasted a couple of hours. I was very nervous and am still cautious (2 weeks post procedure), but very hopeful. I know there is a small chance of a blood clot or other problem (i am on 325 mg. Aspirin for 6 weeks), but have to assume i'll be in the majority. I tried medication to control the tachycardia and it would work for a while and then I would end up in the hospital with a svt episode I couldn't bring under control. Good luck to you - i'd say go for it - I wish I had had the opportunity a lot earlier in my life.

winter01

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Joined: 30 Dec 2004
Posts: 13
Location: Liverpool, UK

Posted: 01-24-05 16:39pm


Would just like to say thanks to you r thiel. I've checked on the net and still was unable to find the risks involved, though thanks for the suggestion purple333, though I think my searching skills are lacking. It's good to hear from someone who's had the procedure done. It's all well and good for the doctors to say it's okay but they've not had it done themselves (or at least mine haven't to my knowledge). You've helped get rid of some of my worry. I'm still a bit scared as I hate needles and people putting sharp objects near me. I'm seeing my consultant at the end of next month to confirm whether i'll be having the ablation or not. I'll be going ahead for definite. I suppose i'll have to adopt your attitude of assuming i'll be in the majority where it goes well. I should hopefully, once i've seen my consultant, be put on a six month waiting list. Roll on august! Just curious, when you went into svt, you said that you were able to control the duration sometimes. How did you do that? I was never able to, all I could do was sit down and do nothing, and most of the time it stopped within 30-60 minutes, not always guaranteed to work though as it has lasted for up to 7 hours before now. Thanks again for taking the time to let me know your experiences with this. It has helped. Let me know how things go over the next few weeks. I hope you won't have to go through it again, and that you are one of the majority and only have to have it once.

r thiel

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Joined: 16 Jan 2005
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Location: Vancouver, BC

Cardiac Ablation Posted: 01-28-05 00:07am


Hello again, now 3 weeks post procedure and all is well - a few momentary arrythmias, but nothing sustained. I looked again at the first post regarding the 90% success rate and I was told by my doctor that the 10% failure means that they have to have another ablation procedure - not that they die or end up worse off than before. The main danger as I understand it is a perforation of the vein during the operation, infection at the entry site or having to have a pacemaker if the surgeon "burns" out too much of the rhythm producing part of the heart (sorry to explain it so poorly - don't really know the correct terminology) - but these risks are quite small - do be sure the surgeon is well practiced in this procedure though! As far as your question regarding bringing the svt under control, I used a variety of vagal maneuvers with some success. I don't know if these are recommended for someone with wpw so I would question a doctor. There is a website explaining it though: www.Mothernature.Com/libra ry/bookshelf/books/47/126.Cfm but again check with a professional before trying these. Best of luck to you - I was supposed to have a 6 month waiting period, but when I met with the doctor, I told him how much this was affecting my life and kind of played it up and he said he would try to get me in sooner (i only waited 2 months). If I can be of any help, let me know. There is also a website on yahoo under groups for persons with wpw.

winter01

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Joined: 30 Dec 2004
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Location: Liverpool, UK

Thanks Posted: 01-28-05 16:01pm


Hiya, good to hear that you’re doing okay. Thanks for getting back so quickly. Again I find that you are very helpful. Firstly to point out that you didn’t explain poorly. You said more than i’ve found out from my doctor (though I suppose i’ll be told all the ins and outs in february). I was briefly told of the possibility of having to have a second ablation and possibly a pace maker, but never told about why this may be needed in a way I understood. I should have asked for clarification, but it was all a bit much to take in at the time. I do know one thing about all this though and that is that i’m going to one of the best places in the uk to have this procedure done, which is reassuring. And with all the info i’ve gained through you and some sites on the net i’m slowly gaining more and more confidence. I’ve had a quick look at the site you recommended, and it seems that i’m doing the right things anyway, eating healthier, exercising and cutting out caffeine. The techniques for stopping tachycardia while it’s happening are interesting. As suggested I will ask my doctor before trying any, in the event my medication doesn’t work and my heart goes into svt. I’ll be checking out the group on yahoo too, I would never have thought there’d be one. I’m hoping my wait will be suckers as yours, or at least that my six months started the last time I saw a cardiologist in november. I just want it all over with. Thanks again. Hope things continue to go well for you.

Byron Fesler

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Joined: 29 Apr 2005
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Location: Idaho

Wpw Ablation Attempt Posted: 04-30-05 16:15pm


Hi i understand your concern for having the ablation, but I can tell you it is worth while. Yes there are risk as with any surgery, and the other person did a good job of explaining them. First the bad news: I am in that 10 percent range where the ablation failed. In fact I am the first patient for my doctor who he did not fix. It is furstrating for him. I have had two open heart surgeries and 8 ablation attempts over the last 23 years. However, each surgery, and ablation attempt has slowed my heart rate during the attacks down. My first episode was 350 bpm for over 8 hours. Since the ablations I only hit about 175 to 240 bpm. Today I have not had an episode in 4 years. I use to have them monthly. God willing, when I go see the doctor next month he will take me totally off my medicine. No matter what, do not stop living a fun life, yes, pay attention to the limitations that you have, but enjoy life. I pray that you go get the ablation, with the new technology, you should be cured. I am living proof that you can live with wpw, I don't let it control me or my life. God bless

Pika

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Joined: 05 May 2005
Posts: 47
Location: Australia

I'm the 10% One Too. Posted: 05-15-05 04:27am


Hi, i'm not intended to scare anyone, I just like people to tell true. I think it is why I want the patients comment not the doctors. I'm the 10% one as well. I believe it wasn't that advance in wpw at that time. My longest palpitation was gone through 2 days and 2 nights continueously in the hospital as an in-patient. Pacemaker implanted 1982 which is not successful. I was ablated in 1985. Ive one external and one internal pacemaker after the ablation on first week. After that I wasn't on medication and no palpitation at all. Until this year 2005, i've palpitation develope. (pulse rate is 70-76 posibility is the pacemaker programe rate.) this is only I can feel vibration in my chest. Dr said is palpitation. He explain that my heart muscle is getting old (i'm 47, am I old????). My upper chamber did not work properly. He expert this will happen but not that quick. Do any dr tell the patients before ablation that the burning scare will cause the heart muscle get old quicker than normal people? Dr prescribe me flecainide and dixozin to talk at this time. I hope if anyone interesting can come and ask me questions. I'll tell the true. Wish everyone well and healthy. Pika.

killerdwarf03

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Joined: 20 May 2005
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Location: Michigan

Heart Ablation- Wpw Syndrome Posted: 05-20-05 17:49pm


I'm glad to see i'm not the only one who has this problem.I was having tachycardia attacks about every 3 years then 2 in one year.The ambulance attendance finally got an ekg reading while I was having an attack so it was decided that I needed an ablation.I had that done in dec of 2004 and it was discovered I had wpw. Since the ablation I thought I was not going to have any more attacks but "lucky me" I had another attack may 5th. I'm scheduled for a second ablation in july.Hopefully it takes care of the problem because every time I have an attack it's worse than the one before.I had no problem with the first one and went back to work after 2 weeks off,only because i'm a nurse aide in a nursing home and do allot of lifting. I'm sure the second one will turn out ok too. I found all my information an yahoo health

pamka

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Joined: 28 May 2005
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Location: Reading, Pa.

Abalation Posted: 05-29-05 13:29pm


Could ablation be done for ventricular tachycardia and there would be no need for a defribullator if it was sucessful /

nurse1

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Joined: 13 Jul 2005
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Cardiac Ablation Posted: 07-13-05 21:15pm


Hello, it is good to hear from a few people that have had cardiac ablation done. I had one done on april 1, 2005. It has now been three months and I am still on toprol xl 50 mg a day. I seem to have no energy and feel lousy all the time. I was told the ablation was successful. My cardiologist found svt of 250 bpm while having the ep study done and was able to successfully ablate this area. Now I am being told I may have another area causing atrial tachycardia. I don't know if I want to go through this procedure again. I seem to be having a slow recovery. Any suggestions from any one.

Smack

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Joined: 03 Aug 2005
Posts: 13

Posted: 08-03-05 03:05am


Noone has posted on this for awhile so hopefully you all still check it for new posts... I have wpw. I found out in dec 2004. I have seen one specialist about it but unless I agreed for the procedure she didn't really want to talk to me much so I don't really understand alot about it. I also no longer have insurance that will allow me to see any about it until 2007. Almost everything I know I have learned through medical dictionaries that have big words that I don't understand. A few things I would definately love to have cleared up are... My heart rate is usually around 125 and I feel dizzy and stuff but some of yours are much higher when you are having an episode, does this mean I have not yet really experienced an "episode"? What exactly is an "episode"? What is a normal heart rate for other people with wpw? Do you feel dizzy as I do at 125 or is it higher? Is 125 bpm even high? Tachycardia is defined as 100 bpm or higher, is it differant in people with wpw? When people work out their heart rate gets up there so shouldn't having a rapid heart rate "technically" help us loose weight? :lol: has anyone been over weight with wpw and been able to loose weight? I was told all I can do it walk and nothing more. It doesn't seem to be helping. Maybe these are stupid questions but they are things that I just can't get answered unless I ask and I have noone else to ask. I really am just confused about this whole thing so I am really hoping someone can give me some sort of direction. Thank you. :?

Pika

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Joined: 05 May 2005
Posts: 47
Location: Australia

Pulse Rate Posted: 08-03-05 07:48am


Hi smack, i still have my wpw pattern and conduction. My pulse rate never go above 80 since after the ablation. I look up the information on web, it said atrial fibrillation's pulse rate is above 350. I have a fib as well but many people complaint hard to feel my pulse. Even if can feel, it is around 70 - 80. I think "episode" means one section. From the palpitation start until it converted. It is one episode. It can be long or short. On day can be few episodes as well. I hope it is the correct explanation. Wpw heart rate are varies. Mine one at the beginning was around like yours. After years to years, it'd gone up. The highest of mine was 240. I still can play half a round of basketball at that rate but not full competition. I'm not very sure are all the wpwers could be skinner. Before the ablation, I think I was quite ok to look at. After I had given birth to two daughters, my weight increased a lot - concerned as over weight. My cardiologist said "yes" I can go and learn tai chi. I have my tai chi lesson every friday night. It is definately my heart wouldn't be behaved. It seems like mine palpitations use to looks like pretty normal now. If that day or few hours no palpitations (good behave) then I feel it is un normal. It isn't seem like my heart. Feel free to ask questions. Look up google, yahoo and involve yourself in some more forums. You'll find it is very helpful and fun. You take care. Pika.

Smack

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Joined: 03 Aug 2005
Posts: 13

Posted: 08-06-05 11:10am


Pika, thanks for the info that helps. It sounds pretty much like it is all just gonna get worse. :shock: here is another question... What do you do when it gets real high? I have heard of a few things but what if they don't work? Do you just sit there til it goes down or is it best to go to the hospital?

Pika

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Joined: 05 May 2005
Posts: 47
Location: Australia

Pulse Rate Posted: 08-06-05 19:43pm


Hi smack, i hardly use to count my pulse. When palpitations started at 6 yrs old, mum also said "go to sleep" when I woke up it all gone. It's until 15 yrs old after a sleep still not reverted then I went to hospital it's 1973. I normally take the medicine a little bit more and went to the bed. The dr methods I used but it wasn't work for me at all. Even though, I had reverted in the er but it started again when I stand up. The chinese massage also works but not lasting long either. I advise you if sit down or after a sleep also not reverted then you better go to hospital. They have a better technology or methods to reverse it now. Wpw also has many types. Well, try to go to the hospital and experience few times. Different dr will do different things. Might be one you would like and suitable for you. Are you taking any medication? You take care. Pika.

Smack

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Joined: 03 Aug 2005
Posts: 13

Posted: 08-06-05 21:09pm


Pika, no I am not taking any medication. The doctor told me if I did I would never be able to have more children. That just is not an option for us. I've read many things about certain vitamins that help, mostly magnesium. I will be starting to supliment myself with it soon. I will let you know if it helps.

Pika

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Joined: 05 May 2005
Posts: 47
Location: Australia

Wpw & Pregnancy Posted: 08-07-05 00:28am


Hi smack, avoid the medication is a a plus choice. I had 2 pregnancies after the ablation. (no medication at that time.) I think it is bad if you planning to have any children while you're taking medication. My elderest daughter is 18 and the little one is 16. They both are healthy. Try the vitamins and minerals suppliment and see how is that goes? It might be helped. If not then don't be disappointed. It still can try ablation. May be newer technology will lodge by then. Keep us in contact. Good luck. Pika

LilFreckles

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Joined: 09 Aug 2005
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Location: Winston-Salem, NC

Hey Smack Posted: 08-09-05 20:02pm


To smack: hope I can help you some....I was diagnosed with svt when I was 4 but began to grow out of it at about 12 (or so we thought) so I was taken off medecine. I am now 21 and have been diagnosed with wpw within the last 2 months. I just had the catheter ablation done 1 week ago, and I am doing ok I guess. The surgery wasn't completely painless, I did feel the burning of the circuit which didn't feel too great but i'm still alive :) the reason I had the ablation was because my "episodes" started back about a year ago and they've gotten worse. Everyone has a different kind of episode but mine are basically when i'm just sitting still, walking, or whatever and my heart all of a sudden jumps up to 250+ bpm. I usually sit down, I turn white in the face and get really short of breath. They say you can slow the heart rate down by dunking your face in ice water, or holding your breath as long as you can. None of those really work for me so I just pace them out. I've only had to go to the emergency room once because it went for 4 hours straight but most of mine now only last about 30 minutes or so. Although, even when i'm not having an episode, my heart rate is usually like yours 125+ bpm. Even since i've had the ablation a week ago. I still feel dizzy and short of breath but the doctor said it may feel like the palpitations will come back for a while but most of the time they don't. My only problem is, I not only have that one extra circuit that he burned off, but he also found another one on the bottom of my heart while he was in there. I had 3 episodes during the procedure that the doctor triggered. He put scar tissue on the bottom circuit and he's hoping it will help, but he may have to go back in. I'm hoping the shortness of breath will go away eventually, i'm too young! :) oh and to answer your question, I do like to exercise to stay in shape too, but I can't as much as I would like just because I don't have enough breath and I get too tired...Most of the time all I do is walk. There is no way I could run, lol. Not like this. I hope I answered some of your questions and if you have any others i'd be glad to try and answer them for you from my experience. Good luck and god bless

Smack

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Joined: 03 Aug 2005
Posts: 13

Posted: 08-15-05 11:50am


Thank you for the info. Some stuff is starting to make sense but it is kinda alot to take in. Another thing my husband and I are having alot of trouble figuring out is why now? I'm 24 and just began having problems last december. I did many sports and never had problems. Why would it all of a sudden become active and give me problems? I have a two year old child, could the pregnancy have something to do with it? I know while I was pregnant I had really high blood pressure and have had it ever since. Maybe the weight I gained triggered something? On a differant note, I began suplimenting myself with magnesium and potassium and so far I actually feel better. In the two weeks I have been taking it my blood pressure went down and I haven't had any real rapid heart rates. Hopefully it's not just a coinsidence. Any way, thanks again to the people who have responded. Even a little info helps us. Take care

aussie_monique

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Joined: 30 Aug 2005
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Location: australia

Good Read Posted: 08-30-05 07:36am


Hi. This morning my 17 year old (well almost 17, she turns 17 tomorrow) sister was diagnosed with wpw. She has got varying appointments with the specialist over the next few days so ive hit the net to find out more. This is the first time that ive ever heard of the condition and it was only 'discovered' in my sister by a routine ecg which was preformed in emergency room last night due to stomach cramps and vomiting. The options that seem to be on the table for people suffering from wpw is (and correct me if im wrong): a) nothing at all b) medication c) open heart surgery i was a little worried when I read in an earlier post that by taking the prescribed medication the patient may suffer problems in conceiving ... Is that the norm of the medication or has someone else been told otherwise. Thank you all for posting things on here, i'll certainly be returning to see of any new outcomes. Monique

Heart Ablation - Wpw Syndrome