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    Old 05-11-2007, 09:39 AM   #1
    crazz2323
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    Had WPW and ablation surgery but heart still races.

    Ok, this is my story. I am 34 years old and I noticed a number of years back that every now and then it would feel like my heart skipped a beat or 2 making me kind of freeze and take a deep breath. This could happen at any time but I noticed it most when I would just sit down or lay down. I never thought much of it until a year ago, while eating lunch at work, my heart started racing. I waited at first thinking it was too much caffeine or something but an hour and a half later it kept on racing. So, I went to a heart center and they diagnosed me with WPW (Wolff-Parkinson-White Syndrome) and atrial fibrillation. My heart was racing at about 145 bpm.

    I was told the combination of the two is extremely risky and could lead to death. I had the option of drugs for the rest of my life or ablation surgery (just going thru arteries in the groin area and neck into the heart to burn out the tissue) to correct the WPW. I opted for the surgery and all seemed good. It took my surgeon 5 hours to complete the surgery. The very day I left the hospital my heart started racing again. I went back to the heart center and they took another EKG clocking me at about 140 bpm and said it looked like the WPW was gone but I still have the atrial fibrillation. Just to give you an idea, when my heart starts racing it is for a good 8-10 hours before it goes back to a normal rhythm and leaves me feeling exhausted, out of breath., and I have no concentration.

    About 8 days later I felt my vision blur and felt kind of ill. Then my hand started to go pretty numb. I went to the hospital and they determined I had a TIA (mini-stroke) possibly due to the surgery. I saw a neurologist and had all kinds of tests done including blood work, MRI, MRA, cat scan, TEE (they put a tube down your throat to get a better look at your heart) etc. Things looked fine, lots of blood flow no clots. My cholesterol made my doctor jealous it was so good. So not much happened for a good number of months. I moved in that time and while flying home from visiting family, my heart once again started racing. Since I was flying home and taking connector flights I had no time to get it looked at. It raced for a good 8 hours. After that, I noticed a significant increase in the skipping beat episodes, I would have some lasting a minute or so. I went to a cardiologist in my new state and basically had to start from scratch. After having a heart monitor on for a month, it was determined my heart was skipping beats but I was told it was nothing to worry about. Beta-blockers knock me out so that wasn't an option.

    Then, this month my heart started racing again at about 189 bpm and lasted a good 10 hours. I was then diagnosed with Paroxysmal atrial fibrillation; still no more sign of the WPW. Now, I need to see a specialist and determine my options. I was given the impression that it was not dangerous but how can my heart racing for such long periods of time not be dangerous? This is the fourth time my heart has raced over a span of a year. What do you think my options will be and how at risk am I? Anyone else have this situation?

     
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    Old 05-11-2007, 06:25 PM   #2
    andreanna
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    Re: Had WPW and ablation surgery but heart still races.

    Im sorry your having issues. My husband had WPW sometimes his heart is 100-120 nothing big he doesnt even notice and frankly he drinks too many energy drink to get accurate measures now anyway. He is 18 years out of WPW ablation.

    I on the other hand have SVT. I just had an EP study and ablation ( unfinished do to complications and odd anatomy of my heart). Your heart at 180something is not normal....but at only 2 episodes a year I your cardiologist probably wont suggest another ablation unless it is something serious. The skipped beats could be from the ablation I have heard that is normal and can last months even up to a year or more. Im glad yoru getting checked. Im sure it is frustrating but better safe you know.

    I hear you about beta blockers I have tried those and some other meds and everything has horrible effects on me. Depression sleep all day and no energy. I am soo lost at what to do now.

    Good Luck

     
    Old 05-11-2007, 07:29 PM   #3
    crazz2323
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    Re: Had WPW and ablation surgery but heart still races.

    Thanks. It has been a big pain. So many tests and doctor's visits. I'm glad your husband hardly notices them but my beats were more noticable and they skipped a lot so it felt very irregular not just going fast. I actually had 4 episodes of racing for long periods of time (8-10 hrs) and many small episodes (last a min or less) through out the year. My skipped beats and racing heart happened before any surgery so the only thing I have noticed is an increase in the frequency of them post surgery. I was wondering if I am being mis-diagnosed. I'm not sure if Paroxysmal atrial fibrillation is correct. Is the racing/skipping beats for prolonged periods of time 8-10 hrs a symptom of Paroxysmal atrial fibrillation or is that another similar condition?

    Quote:
    Originally Posted by andreanna View Post
    Im sorry your having issues. My husband had WPW sometimes his heart is 100-120 nothing big he doesnt even notice and frankly he drinks too many energy drink to get accurate measures now anyway. He is 18 years out of WPW ablation.

    I on the other hand have SVT. I just had an EP study and ablation ( unfinished do to complications and odd anatomy of my heart). Your heart at 180something is not normal....but at only 2 episodes a year I your cardiologist probably wont suggest another ablation unless it is something serious. The skipped beats could be from the ablation I have heard that is normal and can last months even up to a year or more. Im glad yoru getting checked. Im sure it is frustrating but better safe you know.

    I hear you about beta blockers I have tried those and some other meds and everything has horrible effects on me. Depression sleep all day and no energy. I am soo lost at what to do now.

    Good Luck

     
    Old 05-12-2007, 10:07 AM   #4
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    Re: Had WPW and ablation surgery but heart still races.

    Please note I'm not a doctor...just a ordinary person giving u my opinion ...It sounds like u were misdiagnosed...140 bpm doesn't sound like atrial fib. i thought atrial fib. gets really high...like in the mid 200.. to 300 bpm...and before your surgery...those weird beats that you were getting...I get those all the time...and so does my dad..where u feel like u need to take a quick breath in...maybe u had a case of wpw causing svt episodes...or even inapproaite sinus tachycardia which your heart rate goes up for several hours...when the episodes started before surgery...did it feel like your heart slowly got faster and faster....and gradually came down back to normal rhythm?
    Also... now when u get those skipped beats..what do they feel like? like a string of skipped beats lasting a minute...feels out of rhythm and alittle fast?
    I get those all the time for years...thought it could possibly be wpw..or svt...i'm not sure...

     
    Old 05-12-2007, 11:08 AM   #5
    andreanna
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    Re: Had WPW and ablation surgery but heart still races.

    I am not sure what it can be. But anytime you have a pulse above normal especially 130 and up for an extended period of time I would see a DR. It is much easier to diagnose if they catch it in an episode. I have SVT. MY longest episode was a little over 4 hours and then a few minutes after it stopped it came back at over 200 BPM for about 10 minutes and stopped on its own. Most of my episodes last about 1-2 hours never 8 hours. If my heart raced at its SVT level for 8 hours I would definitely pass out.

    I dont know exactly was PAF is so I cant offer an opinion on that. Have you looked up the info on it and seen if your symptoms are similar. In any case you make sure you DR takes you serious. Im sorry I cant help more.

     
    Old 05-12-2007, 11:37 AM   #6
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    Re: Had WPW and ablation surgery but heart still races.

    this is a laymans (but fairly well read) advice and opinion.

    first, there is a huge difference between a-fib and a-tach. tachycardia is simply a rapid heart rate ( I think the limit is 160 or so) a-fib is a (for lack of a better description) a non beat. fibrillation is an unsynchronised and erratic and generally rapid beating of the heart and comes in two flavors; atrial and ventricular.

    with WPW, it is possible for the bundle of Kent (the extra nerve pathway) to allow an a-fib to be transimitted to the ventricles and cause v-fib. V-fib is extremely dangerous and, as my doc told me, unless you are standing next to somebody that can help, cause near immediate death.

    the normal av junction does not allow the transmittal of the a-fib impulses to be passed to the ventricles to become v-fib.

    anyway, since the docs have ruled out a second (or more) bundle of Kent, it would appear the WPW has been treated and is not the problem or of concern.

    (btw WPW is one of the causes of what is termed SVT (or supraventricular tachycardia which merely means a tachycardia (rapid heart rate) that is cause by something outside of the ventricles of the heart)

    PAF is simply when you experience episodes of a-fib that convert to normal sinus rhythm spontaneously.

    continuous a-fib would be considered chronic a-fib.

    anyway, it would seem since you continue to have a-fib, or even other arrythmias, I would continue to seek a dx. It took me through 8 or so doctors before my WPW was ever diagnosed. When I asked the doc who finally dealt with it, I asked him why all the other docs did not see this. His response was a bit saddening but apparently true. He said, "because you went to the wrong doctors". That says a lot to me but apparently it was the truth.

    Keep looking and if neccessary, do not be afraid to go to another doctor. Depending where you live, there are some very good cardiac treatment centers that are known to be very knowledgable. You may seek treatment from one of them.
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    Old 06-03-2007, 06:30 AM   #7
    crazz2323
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    Re: Had WPW and ablation surgery but heart still races.

    When my episodes start it's pretty instant. It seems to just jump to the much faster irregular heart rate and stay there for many hours. Then, all of a sudden, it's back to normal. I did have WPW but now that that is gone I still get these episodes. When I get the skipped beats it sometimes feels like muscle spasms in my chest, other times it gives me an urge to take a deep breath and/or put my hand on my chest to feel what is going on. I don't really get dizzy or feel like I will pass out or anything. I could ignore them until the big one hits and it races for many hours. Sometimes, the skipped beats only last a few beats and it feels just like my heart went out of rhythm and a little fast for those few beats. I heard WPW is hard to diagnose in some people if they don't catch it on an EKG. I hope you figure it out. I was getting minor skipped beats now and then for years until it just started racing one day. When my heart races for hours it is not a consistent racing but irregular. I am seeing a specialist at the end of July.



    Quote:
    Originally Posted by ww23river View Post
    Please note I'm not a doctor...just a ordinary person giving u my opinion ...It sounds like u were misdiagnosed...140 bpm doesn't sound like atrial fib. i thought atrial fib. gets really high...like in the mid 200.. to 300 bpm...and before your surgery...those weird beats that you were getting...I get those all the time...and so does my dad..where u feel like u need to take a quick breath in...maybe u had a case of wpw causing svt episodes...or even inapproaite sinus tachycardia which your heart rate goes up for several hours...when the episodes started before surgery...did it feel like your heart slowly got faster and faster....and gradually came down back to normal rhythm?
    Also... now when u get those skipped beats..what do they feel like? like a string of skipped beats lasting a minute...feels out of rhythm and alittle fast?
    I get those all the time for years...thought it could possibly be wpw..or svt...i'm not sure...

     
    Old 06-03-2007, 01:54 PM   #8
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    Re: Had WPW and ablation surgery but heart still races.

    I just wanted to let you know that I had the PVI surgery at the Cleveland Clinic...I had undergone an ablation that went wrong and made the Afib worse, then to Cleveland for the PVI...my heart beats faster than it used to and I feel that my health is diminished compared to the old me, however, I do not have the Afib episodes that used to last from 4 to 8 hours. Please ask me any questions regarding your situation, we seem to mirror the symptoms.::

     
    Old 06-03-2007, 03:28 PM   #9
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    Re: Had WPW and ablation surgery but heart still races.

    Crazz, has your doctor recommended another EP study or 2nd ablation?

     
    Old 06-03-2007, 11:46 PM   #10
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    Re: Had WPW and ablation surgery but heart still races.

    crazz,

    had a similar experience. experienced PSVT for years with no dx. One doc told me to just cut out the occasional soda i would drink. finally got a dx of psvt after calling 911. They found an accessory tract, but if I remember correctly, it was similar to, but not quite WPW.

    my episodes were triggered by physical movements like bending over too fast like to tie my show etc etc. It would usually hover in the 260bpm range for about 30 - 40 mins and then suddenly go back to normal. When it was done i felt like i had ran a marathon in a half an hour. really took a lot out of me.

    had an RF ablation and i hate to be a downer, but im pretty sure it ruined my life. (at least thus far). Im still waiting to "recover" from this... I have constant pvc's that wern't there before, chest pain and a whole freakish range of new health problems that magically started the day after my ablation. Now im depressed, extremely fatigued, and feel pretty much worthless. Ive seen tons of docs and they all say the same thing... " Its anxiety, take this pill" Well, maybe it is anxiety, but if thats the case, I still blame that on the ablation. After all, i woke up in the middle of the freakin procedure and saw pools of my own blood on the floor, tried to move because i was out of it and just got yelled at be almost every person in the room! that had to do a number on my mental state hahaha...


    hate to be a debbie downer, i wish you luck my friend. i hope stuff turns out well for you.


    oh and just a side note, if you ever have a bout of svt (im not sure about the a-fib) for more than you are comfortable with, there is an amazing drug called adenosine. its a single 6 or 12 cc shot (depends on your physical size and also needs IV access) it basically blocks the ability of the sinus and AV nodes to transmit an electrical signal for a short period of time and it essentially resets your heart. sort of like a chemical version of the shocker paddles. Its hell to go through it, (if an adenosine shot isnt a near death experience, i don't know what is) but the instant relief you get from it when its done working is well worth it in my opinion. Also, not all ambulances will carry it and the ER i was in that day had a very limited supply. I used it all! If the situation calls for it and you have the right medical staff present, i would at least inquire about it. Hopefully you wont ever need it!

     
    Old 06-04-2007, 04:30 AM   #11
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    Re: Had WPW and ablation surgery but heart still races.

    kslager...I feel that my ablation, no I should say that I know my ablation made a bad situation worse...I went from occasional episodes of A-fib to daily episodes.. .I did have the PVI which helped but I am also down. I am sorry you woke up during the ablation...I also woke up as they were using the paddles...I felt like I was hit by a mack truck...I know that I have some residual anxiety because of the trauma. I am sorry for your sadness.

    PVI did stop the constant Afib so you may want to look in that direction...I to had the episodes that started with a sudden change in movement, chocolate also was a trigger.

    Try a thirty day event monitor...and then go to the BEST cardiologist and EP that your insurance will pay for as you know these surgeries are so new that you need to see the best.

     
    Old 06-04-2007, 05:44 AM   #12
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    Re: Had WPW and ablation surgery but heart still races.

    The complexity of the subject is a bit over my head, but let me just toss in an observation from two of my friends who have gone through Hell with A-fib, flutter, PVC's, fainting, panic, runs to the E/R, tachycardias going on for DAYS, and several painful cardioversions.

    Both have done very well with the drug SOTALOL. Might be worth trying if others fail.

     
    Old 06-05-2007, 07:12 AM   #13
    crazz2323
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    Re: Had WPW and ablation surgery but heart still races.

    Wow! Some crazy stories from everyone! With my ablation surgery I woke up once during the procedure myself but it was just enough to feel my heart race really fast. It was probably when they were triggering my problem. Oh, and I do remember being conscious enough to know they were finishing up but I was in and out of consciousness for hours. My procedure took 5 hours they told me! I don't think I have any trauma but I do distinctly remember the feeling of my heart rate going way up. No pain though, and the worst was having to lay still on my back for hours in the hospital bed afterwards. I was so stiff; I just wanted to move a little. I feel my surgeon was very knowledgeable and did a good job. However, I always felt like I was still 20 years old before these problems, now I donít feel quite as healthy. I went to Vassar and had my surgery in NY. Unfortunately, I have since moved to NC and have to wait 2 months to see the specialist in Duke. I had the option for a different hospital but I heard many good thinks about Duke and after reading these posts, I am glad for the wait. I did have a stress test done recently and that was all normal. My heart doctor here says the specialist may try drugs first or may recommend another ablation. Before my first surgery, I was given the option of drugs for the rest of my life or surgery. Well, I donít feel too comfortable taking drugs for a long period of time and figure the long-term side effects will eventually screw something else up so I opted for surgery. If I am given the option again, I may opt for another ablation. Just wondering if a second ablation will cause more problems.
    Oh and thanks maggie123, if I have any more questions Iíll ask

     
    Old 06-05-2007, 02:15 PM   #14
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    Re: Had WPW and ablation surgery but heart still races.

    Quote:
    Originally Posted by kslager View Post

    After all, i woke up in the middle of the freakin procedure and saw pools of my own blood on the floor, tried to move because i was out of it and just got yelled at be almost every person in the room! that had to do a number on my mental state hahaha...
    !
    Pools of blood?? What were they doing that cause pools of blood?

    Where was your insertion site?
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    Old 06-05-2007, 06:51 PM   #15
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    Re: Had WPW and ablation surgery but heart still races.

    THis is to Craazz2323...do you still have irregular heart beats.?..how long does it last. I don't want to make it seem like I know anymore than the average Afib sufferer, because everyone's situation is a bit different, I have just researched the heck out of this and have had great success with the PVI surgery, it has stopped the long episodes and I only take toprol when I feel that my heart is feeling heavy or "squeezes", also, I sometimes have the pins and needles feeling after exercise, and with that, if it is sustained, I will take a toprol. I would say that ablation is highly successful with symptoms of tachy, but not so great with IRREGULAR heart beats...they come from the pulmonary veins that need to be cauterized and that involves pulomnary vein isolation surgery. Note...my resting heart rate has gone from 55 (resting) to 85 (average) resting...that is a common side-effect that the Cardiologist had no knowlege of, but was happy to learn about it when I faxed the info from the Oxford Jounal of Medicine. Alot of info is just a click away!!!

     
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