terry parsons
06-13-2003, 04:46 PM
my 9 year old son was born with wpw and ebsteins anomaly (misplacement of the pulmonary valve) when he was born.he is currently on sotalol ( a beta-blocker).in a couple of months he is to undergo a catheter ablation (they call this a non-invasive procedure.?) to eliminate the extra pathway . the valve problem is moderate and slows him down a bit when playing ,turns blue around nail beds and lips etc. but is otherwise a normal 9 yr. old boy.i would like to learn more info re this procedure so that his mother and i are a little more knowledgable in this area. any input would be appreciated
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martys3
06-13-2003, 10:52 PM
HI, I am 31 yr old male. When i was 13 I was diagnosed with wolf-parkinson-white sysndrom which caused my heart to palpitate. In 1989 I had an ep study where they just mapped my heart, but they didn't have the ablation tech down yet. In 1992 I had an ep study with rf ablation and I had no problems until about 1 year ago. I started getting palpitations again in 2002 and they came mostly when i sat down on the couch to relax. I tried to stop caffiene and I went to the cardiologist who ran the normal tests, ekg, echocardiogram, holtermonitor and got the answer that i have an irregular heart beat and it wasn't anything to really worry about. Recently, my palpitations came more frequently, and the cardiologist ordered me another 24 hour holter monitor and they saw some Pre-marture atrial contractions and some Tachycardia ( 145 beats per minute). I went to have an ep study yesterday morning and they found AV node reentry tachycardia path which they had ablated. So far, I feel much better, but the doctor wasn't able to say 100 percent if this was the cause, but I know for the last year and a half i was very concious of my heart beat because it felt like it skipped beats a lot and would beat fast at times. Today, I actually don't feel my heart beating and things seem normal again. The ep study has come along way since 92, which i remember every minute of it, but all i remember from yesterday is being wheeled into the room and then being in the reovery room. Hope this helps.
1btg
06-18-2003, 02:57 AM
About catheter ablation:
It Is an invasive procedure. The surgeon inserts a catheter through an insision on the groin which travels all the way to the heart. There, they apply small electrical charges in different areas of the heart to recreate the symptoms. When a certain area of the heart [tissue] is identified as the culprit it must be destroyed. Radio Frequency, (rf), is then applied to that area which "microwaves" it, therefore destroying the tissue that causes the problem. A cooked heart you may ask? Yes!!!
(Radio Frequency has nothing to do with LASER as many people believe. Eg: your microwave oven is a transmitter @ 2.4 gigahertz [UHF] and not a lazer generator).
This procedure has become common lately but never risk free! It could perforate the heart if not done properly and cause even more palpitations later on. In some rare cases it can cause life threatening arrhythmias or even death. I don't want to scare you but the facts are the facts.
It is your right to ask the doctor about ALL that's involved before, during and after the procedure and if he/she don't give you all the information you want, CHANGE DOCTORS! You will be required to sign papers. Read them carefuly. Most likely things will go just fine but nevertheless YOU MUST BE INFORMED ABOUT EVERYTHING THAT TAKES PLACE.
Ask, push, push, ask, learn, discuss. I hope with all my heart that everything turns out just fine for the little boy and it probably will. Good luck!
It Is an invasive procedure. The surgeon inserts a catheter through an insision on the groin which travels all the way to the heart. There, they apply small electrical charges in different areas of the heart to recreate the symptoms. When a certain area of the heart [tissue] is identified as the culprit it must be destroyed. Radio Frequency, (rf), is then applied to that area which "microwaves" it, therefore destroying the tissue that causes the problem. A cooked heart you may ask? Yes!!!
(Radio Frequency has nothing to do with LASER as many people believe. Eg: your microwave oven is a transmitter @ 2.4 gigahertz [UHF] and not a lazer generator).
This procedure has become common lately but never risk free! It could perforate the heart if not done properly and cause even more palpitations later on. In some rare cases it can cause life threatening arrhythmias or even death. I don't want to scare you but the facts are the facts.
It is your right to ask the doctor about ALL that's involved before, during and after the procedure and if he/she don't give you all the information you want, CHANGE DOCTORS! You will be required to sign papers. Read them carefuly. Most likely things will go just fine but nevertheless YOU MUST BE INFORMED ABOUT EVERYTHING THAT TAKES PLACE.
Ask, push, push, ask, learn, discuss. I hope with all my heart that everything turns out just fine for the little boy and it probably will. Good luck!
starryskies86
06-30-2003, 07:19 PM
Originally posted by martys3:
HI, I am 31 yr old male. When i was 13 I was diagnosed with wolf-parkinson-white sysndrom which caused my heart to palpitate. In 1989 I had an ep study where they just mapped my heart, but they didn't have the ablation tech down yet. In 1992 I had an ep study with rf ablation and I had no problems until about 1 year ago. I started getting palpitations again in 2002 and they came mostly when i sat down on the couch to relax. I tried to stop caffiene and I went to the cardiologist who ran the normal tests, ekg, echocardiogram, holtermonitor and got the answer that i have an irregular heart beat and it wasn't anything to really worry about. Recently, my palpitations came more frequently, and the cardiologist ordered me another 24 hour holter monitor and they saw some Pre-marture atrial contractions and some Tachycardia ( 145 beats per minute). I went to have an ep study yesterday morning and they found AV node reentry tachycardia path which they had ablated. So far, I feel much better, but the doctor wasn't able to say 100 percent if this was the cause, but I know for the last year and a half i was very concious of my heart beat because it felt like it skipped beats a lot and would beat fast at times. Today, I actually don't feel my heart beating and things seem normal again. The ep study has come along way since 92, which i remember every minute of it, but all i remember from yesterday is being wheeled into the room and then being in the reovery room. Hope this helps.
Hello martys3
i am 16, and i too was diagnosed with WPW about 4 years ago and i had the catheter ablation procedure done and i am still to this day feeling as if the problem has not gone away. i have gone to my cardiologist and i have had countless ecg's, ekg's, heart holters, wrist watch monitors, and basically you name it and i have had everything available to try to track the palpitation. The doctor says that my palpitations aren't anything to worry about, but again, i feel it is because its not normal to have palpitations when your relaxing and doing absolutely nothing. I also have been feeling shortness of breath, and have cold hands. I turn pale and my heart seems to flutter, and my doctor says its nothing to worry about. Please write back and let me know if that is what you also felt.
HI, I am 31 yr old male. When i was 13 I was diagnosed with wolf-parkinson-white sysndrom which caused my heart to palpitate. In 1989 I had an ep study where they just mapped my heart, but they didn't have the ablation tech down yet. In 1992 I had an ep study with rf ablation and I had no problems until about 1 year ago. I started getting palpitations again in 2002 and they came mostly when i sat down on the couch to relax. I tried to stop caffiene and I went to the cardiologist who ran the normal tests, ekg, echocardiogram, holtermonitor and got the answer that i have an irregular heart beat and it wasn't anything to really worry about. Recently, my palpitations came more frequently, and the cardiologist ordered me another 24 hour holter monitor and they saw some Pre-marture atrial contractions and some Tachycardia ( 145 beats per minute). I went to have an ep study yesterday morning and they found AV node reentry tachycardia path which they had ablated. So far, I feel much better, but the doctor wasn't able to say 100 percent if this was the cause, but I know for the last year and a half i was very concious of my heart beat because it felt like it skipped beats a lot and would beat fast at times. Today, I actually don't feel my heart beating and things seem normal again. The ep study has come along way since 92, which i remember every minute of it, but all i remember from yesterday is being wheeled into the room and then being in the reovery room. Hope this helps.
Hello martys3
i am 16, and i too was diagnosed with WPW about 4 years ago and i had the catheter ablation procedure done and i am still to this day feeling as if the problem has not gone away. i have gone to my cardiologist and i have had countless ecg's, ekg's, heart holters, wrist watch monitors, and basically you name it and i have had everything available to try to track the palpitation. The doctor says that my palpitations aren't anything to worry about, but again, i feel it is because its not normal to have palpitations when your relaxing and doing absolutely nothing. I also have been feeling shortness of breath, and have cold hands. I turn pale and my heart seems to flutter, and my doctor says its nothing to worry about. Please write back and let me know if that is what you also felt.
martys3
07-03-2003, 04:05 PM
HEY starryskies86,
sometimes i feel shortness of breath when i am having a palpitation, but it's more like i kind of have to concentrate on breathing, sometimes I actually have to get up and walk around and try to get my mind off of it. Recently i was having a really bad one and my friend said that i turned pale. I remember my hands started tingling during that particular episode. I don't have any signs of WPW on my ekg now but i am still having some palpitations even after my third ablation. I am scheduled to follow up with the doctor in about 2 weeks I'll keep you posted.
sometimes i feel shortness of breath when i am having a palpitation, but it's more like i kind of have to concentrate on breathing, sometimes I actually have to get up and walk around and try to get my mind off of it. Recently i was having a really bad one and my friend said that i turned pale. I remember my hands started tingling during that particular episode. I don't have any signs of WPW on my ekg now but i am still having some palpitations even after my third ablation. I am scheduled to follow up with the doctor in about 2 weeks I'll keep you posted.
techblues
07-04-2003, 12:15 PM
Hi Terri,
I'm new here and this is my first post but I thought I'd throw in my two cents. First of all, I have a 6 yr old son, so I know how you must feel having a child with a heart ailment.
I was diagnosed with WPW about 10 yrs. ago. I had an EP study and an ablation done also, but it was unsuccessful. My alternate pathway was too deep in the septum and they couldn't generate enough energy to burn it out without causing damage to my heart. The ablation is an invasive procedure as you can see from the previous posts. However, your son will not remember any of it. It is a relatively benign procedure and to be honest, I was more worried reading the release forms for the procedure than I was of the procedure itself. EP's have made tremendous advances in the technique over the past 10 years. Keeping my fingers crossed that your son will be totally cured of this aggravating condition. God bless you and him.
------------------
Best to you,
Tech
WPW syndrome misdiagnosed as PAT at age 2
MVP and TVP diagnosed at age 32
MVP induced Panic disorder age 33
I'm new here and this is my first post but I thought I'd throw in my two cents. First of all, I have a 6 yr old son, so I know how you must feel having a child with a heart ailment.
I was diagnosed with WPW about 10 yrs. ago. I had an EP study and an ablation done also, but it was unsuccessful. My alternate pathway was too deep in the septum and they couldn't generate enough energy to burn it out without causing damage to my heart. The ablation is an invasive procedure as you can see from the previous posts. However, your son will not remember any of it. It is a relatively benign procedure and to be honest, I was more worried reading the release forms for the procedure than I was of the procedure itself. EP's have made tremendous advances in the technique over the past 10 years. Keeping my fingers crossed that your son will be totally cured of this aggravating condition. God bless you and him.
------------------
Best to you,
Tech
WPW syndrome misdiagnosed as PAT at age 2
MVP and TVP diagnosed at age 32
MVP induced Panic disorder age 33
Staceigh_Lynn
07-05-2003, 01:50 AM
My experience: (not to discourage you or anything) I am an 18 year old female with WPW. I was diagnosed with it in July of last year. I had ablation in September. It was unsuccessful. The doctor said the pathway was too deep for him to get to. He said he could have tried but the chances of me ending up with a pacemaker as a result were pretty good. The procedure is suppose to have about a 95% success rate, but in my case and in most other cases that I have heard of, it is unsuccessful. Which was rather disappointing to me, because it cost me over $17,000. I would recommend the procedure though because a one time price of $17,000 would be so much better than having to buy the expensive medicine every month. (mine is expensive) Good Luck and I hope everything turns out well!
strattercaster
08-03-2003, 11:46 AM
Two years ago, my daughter (then 15) was diagnosed with WPW syndrome after passing out at home. Her heartrate was stabilized with meds, and she went for an ablation two months later. I too did lots of research on the web about the procedure and it is easy to get alarmed about the what "might" happen - but I found it much more helpful to ask the pediatric cardiologist my family wa working with what HIS experience with the procedure was.
-How long had he been performing ablations?
-Approx. how many ablations had he performed during that period
-What if any negative outcomes had he experienced?
-How often had this occured?
- Approx. what %age of his ablations had been successful
-What is the relative risk of the procedure vs the risk of not having the procdure done?
This last question did it for me - my research, and the MDs response indicated that the risks associated with the procedure were far, far lower then of not having the procedure down. And the risks associated with general anesthesia are also greater then the risks associated with ablation.
Bottom line - he was a physician who has a reputation for taking his time to make sure he got all the extra node tissue. And he did - my daughter was in the OR for 8 hours. She woke up - gave her Mom and mea "thumbs up", and spent the night in the hospital with the most discomfort in her legs. She went home the following morning, was back in school (with a monitor) on Monday and three months later she joined me hiking in the Grand Canyon!
I was terrified of the procedure before I did my research. I understand the concerns of dealing with your child's heart. But keep in mind that the heart is a very, very strong muscle. Especially in children. This is very different then dealing with an older heart with diseased tissue.
And one final note - an earlier post stated something about "cooking the heart" - which is really a rather foolish statement. It is a precise point of heat that burns an extremely small extra node merely millimeters across, not a large swath of tissue.
Good luck! My daughter chose to have the procedure done to "get it over with" and has never regretted it for a moment. Neither have I.
-How long had he been performing ablations?
-Approx. how many ablations had he performed during that period
-What if any negative outcomes had he experienced?
-How often had this occured?
- Approx. what %age of his ablations had been successful
-What is the relative risk of the procedure vs the risk of not having the procdure done?
This last question did it for me - my research, and the MDs response indicated that the risks associated with the procedure were far, far lower then of not having the procedure down. And the risks associated with general anesthesia are also greater then the risks associated with ablation.
Bottom line - he was a physician who has a reputation for taking his time to make sure he got all the extra node tissue. And he did - my daughter was in the OR for 8 hours. She woke up - gave her Mom and mea "thumbs up", and spent the night in the hospital with the most discomfort in her legs. She went home the following morning, was back in school (with a monitor) on Monday and three months later she joined me hiking in the Grand Canyon!
I was terrified of the procedure before I did my research. I understand the concerns of dealing with your child's heart. But keep in mind that the heart is a very, very strong muscle. Especially in children. This is very different then dealing with an older heart with diseased tissue.
And one final note - an earlier post stated something about "cooking the heart" - which is really a rather foolish statement. It is a precise point of heat that burns an extremely small extra node merely millimeters across, not a large swath of tissue.
Good luck! My daughter chose to have the procedure done to "get it over with" and has never regretted it for a moment. Neither have I.