Wolff-Parkinson-White Syndrome

It was a ten o’clock on a warm July evening. I had been called from the campfire bowl to the camp office up the hill where I helped a homesick camper and was now on my return trip. If I hurried I could be back in time for the announcements.

I slowed at the bottom of the first hill. Somehow, unlike everyone else, I hadn’t adjusted to the elevation even after two months.

It was dark and I didn’t want to get disoriented. I lined myself up with the pathway, noting the lights along the way. I stared at the first one, the largest, and started running again toward it. Somehow, the closer I got to the light, the smaller it looked. As I was trying to explain to myself how this could be, the light narrowed and dimmed, disappearing from my vision. I felt my heart racing and tried to calm my nerves. But this was different. I wasn’t nervous or that tired, but my heartbeat felt strange.

The lights wouldn’t have gone out before all of the staff was back from campfire. I convinced myself I must have taken longer than I thought so everyone must already be in bed. I turned around, deciding I would ask my roommate about the announcements later.

As I turned, I scratched my face on a tree branch. I couldn’t see anything; it was completely dark. All I could do was hold my hands out in front of me and feel my way along. But something wasn’t right. The open path that had been behind me wasn’t there. There were trees all around me, every way I turned, and I couldn’t get out. I could barely move a foot in any direction. I was tired and confused and my heart continued to beat erratically.

The clinic lights and bathroom lights should have still been on and visible from where I was. Where were those lights? I spun in a few circles trying to find any hint of where I had ended up. Nothing was familiar.

By this point tears were streaming down my face. It didn’t make any sense. I couldn’t get out of the circle of trees holding me in. I made one more effort, pushing with all my strength in each direction. I yelled out to see if anyone was near. It felt as though the sound died inches from my face. What was going on?

I sat down on the bark chip covered ground in failure and closed my eyes. I would sleep here and find my way back in the morning. Or would I?

Then I saw a glimmer of light through my closed eyelids. As I opened my eyes, I looked out across an open landscape of the lake and noticed I was sitting on a bench, not the rough ground I had sat down on.

Shaking, I stood up and turned, sure enough, the light was shining brightly, illuminating the pathway down the hill. As my heart regained a normal beat, I made my way down the open, lighted pathway and joined the staff at the bottom. I had just missed the announcements.

When I shared my story with friends, they told me I was dehydrated and to drink more. So, the next time it happened, I didn’t even think to tell anyone. It wasn’t until a few months later that I was able to put a name to my symptoms. Wolff-Parkinson-White Syndrome. Very few people have ever heard of it, and a few months ago I was the same way. It is valuable to know though, so that if you have symptoms or know someone who does, you don’t wait. I now know what it means and how it affects one’s life as I have experienced what it really means, not just the dictionary definition.

So started the speech my daughter, Ashley, gave at school yesterday. She spoke from experience, having recently been diagnosed with WPW syndrome. We are truly blessed that Ashley discovered her condition in a sports physical before the basketball season started and that, thanks to the miracles of modern medicine, she has it no more.

By Brent Logan

Engineer. Lawyer. WordPress geek. Longboarder. Blood donor. Photographer. More about Brent.

49 comments

  1. Hi All,

    Some news for you, I have been to the hospital a few times over the last couple of years with palpitations after my orginal operation for WPW was a success – (noted above in previous blog). It turns out I have Atrial Fibrillation (paroxsymal, I beleive as only happens now and then, not all the time). I was quite disappointed, as my original ablation to cure WPW was a success, now I have this. As it’s not WPW anymore, I still feel the need to post this as I beleive it is related to either having WPW or the ablation procedure itself.

    I am awaiting to hear back from the Docs about going in for another procedure, I’n not sure what exactly they will do.
    I find Atrial Fibrillation more annnoying than WPW, mainly because it happnens more often and last longer. As far as I know, it is not life threatening, but gives you higher chance of having a stroke. A-Fib commonly occurs in people over 65, which sorta makes me feel like crap as I am 25. I hope the operation will be a success as I avoid excercise, because I know A-Fib will kick in! The Doc said, don’t stop doing a thing and just keep doing things as per normal. Easy for him to say – A-fib is a pain in the butt and sometimes can take hours to disappear!

    I think the flip flop feeling might be a symptom of Atrial Flutter, but I have no confirmation of this and once again, Doc didn’t seem concerned with it. I have talked to many people I know with no history of heart probs and they get a flutter or flip flop now and then. I think mine occurs on a more regular basis because of the A-fib. I have bouts of about two or three weeks where the flutters happen at least every day, then the good period starts, when I dont have a flutter at all for about another two to three weeks.

    Those worried about going in for the operation – don’t be. Wouldnt you rather the satisfaction to know WPW is gone than have to live with the worry? Of course there’s a chance it might not get cured, but hey! – you gave it a shot!

    My surgery for the A-fib is elective. I am choosing to get this done because it is annoying and I want to play sport, play the drums, love my girlfriend and eventually have kids without the worry in the back of my head all the time.

    I will write again after the operation and keep you up to date. Good luck to you all.

    Peace

    Keith

    P.S Congratulations SAM!

    P.S.S Colleen, I will be praying for your son also!

  2. I was diagnosed with WPW 5 years ago and only have the occasional episode. Does anyone else experience just fluttering? I hate having this label. I needed some things done for other health concerns, but no doctor will deal with it because of the WPW…arg.

  3. Thanks Keith, best of luck to you. I agree that piece of mind is important so having the op is a good idea.
    I feel great now 6 months on after the op, I had the odd flutter up to 3 months after but all gone now; fingers crossed.

    SHerri I too had just occasional fluttering, I think thats part and parcel of WPW :( (depending on type of WPW).

    Take care folks

  4. I was diagnosed with wpw when i was 7 years old. Three years on I was finally operated on in 1984. Back then it was open heart surgery and the operation took 8 hours. I now have the palpitations back and i’m awaiting surgery in the next few months. the drs are still not sure if its wpw back again or maybe something else. I feel tired and sick all the time. before i had the surgery i was annorexic and very unwell.
    it was very interesting to read other stories and good luck to everyone.
    Nicole, swan hill Australia

  5. I love the comments on this post. Those of you who have been diagnosed with WPW are a very supportive community.

    Because this post is now more than two years old, it’s time for an update. Ashley’s diagnosis and treatment went fairly well and her past WPW syndrome does not limit her activity. Although she had some complications after the RF ablation, she spent last school year working in an orphanage in the central region of the Dominican Republic some distance away from the nearest hospital. This summer, she’s on a mission trip in Nepal.

    Good luck to all in your treatments!

  6. I was just recently diagnosed with WPW. I only have one episode of palpitations prior to this and that was two years ago which just subside so I kind of just ignore it, I’m actually a nurse working in Neuro ICU, and while on my shift just all of a sudden I felt the palpitations since I’m at work and curious of my heart rate I attached myself to the monitor, scared the hell out of me HR on the 240s, my co-workers even panicked when they saw it, given a shot of adenosine and break my SVT, but then after that they did an EKG showed I have WPW … I’m 35 yrs old, I’m opting for ablation, for me though my symptoms is not frequent I’ll take the risk of cardiac ablation rather than take the risk of having future episodes, you don’t know when the attack is going to happen but I could be driving and kill myself or I could kill somebody by causing an accident… to be honest I’m really scared myself to have the procedure having seen some serious complications before when used to worked in cardiac unit but I got myself a good doctor and prayers from family and friends… going for ablation soon… I’ll update soon after my procedure is done.

  7. I was diagnosed with WPW in February of 2005 at the age of 27. I had previously complained of a racing heart beat from time to time and the doctors had always blamed it on anxiety. I was told that my heart had been beating perfectly normally, just too fast. Well, I’ll admit that I did have some anxiety issues and I saw a therapist weekly for a few years to address those. The reduction in my anxiety issues did help things out, but I still occasionally would have bouts of a racing heart. These episodes would generally last less than two minutes. They started and stopped as though a switch had been flipped. I understand that this sudden start and stop of the racing heart beat is fairly charecteristic of WPW.

    Anyway, in February ’05, my regular doctor gave me an EKG that showed the WPW. He told me at the time that it was nothing for me to worry about and described it more as a characteristic than a problem. Three years later I went back to my doctor for a regular check-up and he did another EKG. This time the WPW showed a bit more strongly and my doctor was still quite sure that it wasn’t a “problem.” Well, I’m a commercially licensed pilot and I intend to soon pursue a career in that field. When I turn 35 (only four years from now), I’ll have to start taking EKG’s for the FAA. So of course this is something that I was going to have to deal with at some point and explain to them. Better sooner rather than later right?

    I contacted that Aircraft Owners and Pilots Assoc and asked them what they know about WPW. They suggested that it is indeed something that the FAA requires notification of (I hadn’t previously disclosed it because of my doctor’s insistance that it wasn’t a problem). When I sent a letter to the FAA they asked that I visit a cardiologist for thorough testing. The first cardiologist that I was sent to was a “plumber” and not an “electrician” so that doctor referred me to another friend of his. This EP guy specialed in electrical abnormalities of the heart and was quite sure that I should have the extra pathway in my heart ablated.

    To be honest in the back of my mind I was hoping he’d recommend the ablation. It meant that the whole thing would be over and done with. I was told that if the operation was successful that the procedure was absolutely considered to be a complete cure. I scheduled the procedure for two weeks or so after the initial appointment.

    Well, yesterday was the big day, August 1st 2008. I think the worst part of the whole thing was the fact that I got zero sleep the night before and then couldn’t eat all day. I registered at the hospital at 1:00 in the afternoon and went in to be prepped at around 1:40 or so. They gave me an IV with a saline solution and checked my vitals. The procedure started on time at about 3:00 and lasted about an hour and a half. When they inserted the catheters in my groin it hurt no more than the IV did. Really no big deal. And I didn’t feel a single thing as they ran the catheters up to my heart. Honestly, it was nothing and I was wide awake, though they had given me something to help me relax.

    After inserting the catheters the doctor “paced” my heart speeding it up for brief intervals and attempting to recreate the goofy rhythms that I had experienced before. I was worried about this part thinking that it would be really stressful. It wasn’t. Sure my heart sped up, but nothing that I hadn’t ever felt before. Heck, I was feeling some anxiety anyway so it seemed normal that my heart should be speeding up. At one point I heard the doctor say, “There! That’s tachycardia.” and he asked, “Does that feel familiar?” You bet it did. That was the exact sensation that I had been having during my episodes. I let him know that he was spot on. I’m quite sure that he didn’t need my feedback in order to be sure. He knew from the results that he had on the screen already anyway.

    The next part was the only part that was painful at all. I heard that doctor say, “Ablate………Stop.” The time of the ablation was at most 3 seconds. The pain was maybe a four out of ten with ten being the worst. The broken toe that I had a few years back was much worse. I told the doctor, “That hurt a little bit” and he had one of the nurses give me a bit more sedative. In total I think they probably ablated maybe six times or so and never for more than a few seconds. I remember complaining a total of two or three times total and each time they gave me just a little bit more sedative. Again, I say that I complained about the pain, but it wasn’t bad. I didn’t jump or say, “Ouch.” I just mentioned it to them each time like they had asked me to. And the pain was only during the actual ablation. It stopped the second the doctor said stop. I don’t remember the doctor announcing that he was done, but I do remember them pulling the catheters out (which didn’t feel like much of anything at all). The next thing I remember was being wheeled back into my hospital room where my mom and girlfriend were waiting. A few minutes later they did an EKG for me and the doctor told me that it was the first normal EKG of my life.

    Today is the day after and my groin is a bit sore where they inserted the catheters, but nothing terrible. I’m able to move about just fine and am just trying to take it easy to be sure that things heal up nicely. My chest feels pretty darned normal, maybe a bit of discomfort there when I stop to think about it, right in the spot where the ablation pain was during the procedure. My doctor tells me that I’ll be able to run a marathon in a week if I want. Thanks, I’ll pass, but it’s good to know that I’ll be back up to speed. One month from now I’ll be having a follow-up EKG done to verify that the WPW is gone for good. The doctor said that based on the way that the procedure went he has very strong expectations that the WPW will never come back.

    One of the things that I found disappointing on the web in general was the lack of descriptions of the procedure by actual patients. I wanted to know what it felt like to undergo the procedure. It’s the only surgery I’ve ever had so I had no idea what to expect. I hope that this description helps someone out a bit with alleviating anxiety before having it done. Any questions about it at all that I didn’t answer here?

  8. I have just recently been diagnosed with WPWS and im having the operation in a week… Still struggling to comprehend what is going on as it is all happening so fast. Any pointers??

  9. Hello everyone,

    My son wants to join the military. He was diagnosed with WPW last year and is now 17 years old. His ablation did not work and has to take medication for the rest of his life; however, he has been medically cleared to participate in sports and has been playing varsity baksetball at his high school for 2 years with no problems. Does anyone know if WPW is an exclusionary condition for the military?

  10. I was diagnosed with wpw around age 10 am now 22 and have had basically 2 episodes a year and it seems i usually would get an episode around that time of the month does this have anything to do with hormones i had a baby 8 months ago and within the last couple months before birth i got an episode, i was so terrified about the baby but it did not effect him but my hormones were crazy at that time (with the baby coming and all). also how bad is it smoking with wpw i know its bad anyway and i kicked the habit my whole preg. but recently have had a couple here and there

  11. It’s so nice to finally find a site where you can connect with other people who have gone through this. So here’s my story…

    I remember getting episodes as young as 7 yrs old. I would get them frequent, usually lasting several seconds to a couple of minutes. Intensely fast heart rate, pain/pressure in my chest, and a dizzy-like feeling were my symptoms. I was so young and would get them so often, so to me this was normal. If my mom and I would mention it to the doctors it was not taken seriously. When I was in the 6th grade I missed a whole day of school, I had an episode that begun in the morning and lasted hours. One doctor in my teens thought I was having panic attacks. This doctor however did send me to a cardiologist and they sent me home with a holter monitor. This monitor was worn for about a day. Of course it showed nothing. You usually have to be in a episode for a ECG/EKG to pick it up.

    Fast forward to my early twenties… I was at work one day and a episode started. I was working in a dental office and hooked myself up to one of the blood pressure/heart rate cuffs. My heart rate was at over 200 BPM. Oh, I forgot to mention that with all my other episodes, what would usually stop the fast heart rate would be to lie down. Somehow the vertical to horizontal change would knock it out. Usually though… With the episode I was having at work laying down was not working. I quickly drove myself to urgent care. Crazy right?

    Finally, I had an answer to what was going on all these years. They referred to it as SVT or supraventricular tachycardia which is the most common arrhythmia associated with WPW syndrome. The doctors at urgent care immediately put my on beta-blocker medications and referred me to a cardiologist. The specialist suggested the catheter-ablation procedure and I opted for it. I think it has been one of the best decision I have ever made. The procedure itself I think took about 6 hours. It varies for everyone because it depends on how fast they can locate the pathways that are causing it. They made incisions through my groin and neck. I was in the hospital overnight and went home the day after surgery. I missed about a week from work.

    Overall, the procedure worked wonderfully for me. I was getting the episodes often and they were lasting longer. It was interfering my life quite a bit. I’m so happy that I chose to do it. I am 28 now. They surgery was done in April 2006, I was 22 years old. I have gotten little tiny episodes every now and then. But they are so quick and gone in a flash and I usually don’t even need to lay down to knock it out. I also sporadically get the skipped beats, but again its so rare. Nothing to what I was use to pre procedure. Another thing I forgot to mention is that these episodes basically appear from nowhere or you could be doing really normal activities. I could be sitting calmly reading a book and it could start. I did read from another commenter that standing up could trigger it. This is true for me. Really though, it was like I could be doing something so normal and it would start.

    Well this was my story and hope that it may help someone. Thank you. :)

  12. My daughter has just turned 6 and has been diagnosed with WPW. She is so full of energy, to look at her you would never know she had this condition. She had been complaining of chest pain, a strange feeling in her heart and a stinging sensation in her throat. During an episode I also noticed a little dry cough (as if she was clearing her throat). At first the doctor said it sounded like indigestion but when it didn’t go away he referred us to a specialist. The cardio did an ECG — the result showed WPW right away. He also did an echo and said her heart is healthy with no murmur. He has arranged for my daughter to have a Holter monitor fitted for 48 hours.

  13. Sonja, that must be scary for you. 6! We hope it turns out well for your daughter. We are fortunate to live at a time where WPW can be detected and treated.

  14. My husband was diagnosed in his 30s with WPW after his second full marathon. It was by chance during a company-offered health check for employees through ECG they discovered abnormal wave pattern. He was offered ablation by the first cardiologist. Sought a second opinion and decided that he didn’t want an ablation as the second cardiologist told him it may grow back again or he may need a heart pacer if it goes awry. It’s been 8 years now and he is still alright, not on any medication. I suppose I will get his cholesterol checked and advice him to revisit a cardiologist which he hasn’t done in at least 8 years. He still runs his treadmill daily of approximately 4 km and does some weight exercise. I wouldn’t advise others to be like him though but it is an individual choice.

  15. Angel, I’m glad to hear your husband is doing well. You’re right about treatment being an individual’s choice. I would recommend talking to a professional more often than once every eight years, though. Good luck!

  16. I was diagnosed aged 22 and had an Ablation proceedure in 1991. 22 years on I’m still having daily episodes of missed beats / racing heart. I’m told that WPW no longer shows on my ECG. Saw my doctor again yesterday and was advised that I have to accept that its just how my heart works and that I just have to “live with it”! Its not going to kill me and so the UK NHS won’t offer any more treatment. He also told me that 10 years ago, the consultant said that there was a small possibility that the ablation hadn’t competely destroyed the accessory pathway, but even knowing this, there will be no more treatment for me. I’m at my wits end living with this – has anyone experienced anything similar or can give me advice?

  17. Teresa, that sounds uncomfortable/scary. I’m not a doctor (and don’t play one on my blog). I’m not sure i’d suggest getting medical advice on a blog. If I were you, I’d be tempted to get a second doctor’s opinion. And maybe some advice on how to work within your health system. Good luck!

  18. Hello :)

    First of all sorry for my English – I’m from Poland. :) I understand what I read, worse with writing… ;) On the polish Internet forums I can’t find any information…

    I’m looking for people with WPW syndrome and information: Can we fly?! :( In small Poland flying is not so common…

    I am 27 years old woman and I have WPW syndrome. All the time I take medications: propafenonum 150 mg x3. I get a episode of supraventricular tachycardia about once a year – end at the time and stop on its own. I don’t have any other diseases.

    I scheduled a flight to Turkey (from Poland flight takes 3 hours). Do people with WPW categorically can’t fly a plane? I’m getting conflicting information and I’m very scared. : (

    I read that conditions pressurized cabin not have much effect on the heart. Elsewhere, wrote that as a result of less oxygen, heart rate increases and creates a rhythm disturbance. Maybe then I can get the SVT?

    The guidelines also give different information. One wrote that “well-controlled supraventricular arrhytmias – unrestricted”, in the second case: “Cardiovasculat Contraindications to commercial airline flight: Uncontrolled ventricular or supraventricular tachycardia.” :(

    Should I cancel trip? Doctors give conflicting information …

    Thanks in advance… greetings :)

  19. No need to apologize for your English. It’s very good.

    I wish I could give you advice, but I can’t. That’s going to have to come from your doctor, the one who is treating you for WPW.

    The problem with getting medical advice over the Internet is none of us really know your medical history.

    Good luck!

  20. I understand. Anyway thank you for the quick reply :)

    I know that doctor’s opinion is the most important. My doctor doesn’t know… So I just was looking for people with WPW syndrome who fly and there are no complications… and I can’t find. Sometimes I feel that I’m the only one have WPW syndrome… :) I’m looking for the English-language guidelines too. Probably I have to give up the trip…

    Thank you again and best regards :)

  21. I was finally diagnosed with WPW in 1998, 2 months before my first grandson was born, when I was 38. The Years and episodes of fast heartbeat had become more and more pronounced by my late 30’s, and I began having periodic episodes of passing out, fainting. Now that I finally had a name for what was happening, I had the radio ablation surgery in 1998 right before my grandson was born. Funny, though, all my life with WPW I always had low blood pressure, even thru 2 pregnancies, and now that I’m 55, it’s stratospheric. I’ve also had 3+ strokes (my neurologist can’t tell how many from the brain scans, but she says there’ve definitely been more than 3). HPB post WPW — I wonder if it’s common, and how many folks with WPW have also had strokes post WPW correction?

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