support for ablation for Wolff parkinson White Syndrome

[hesterbox]

Would anyone who has had ablation be willing to write responses to my journal that I have written after ablation for Wolff Parkinson White four days ago. I feel rather alone, not knowing anyone who has experienced this and I have no idea what is normal or not, apart from the brief information I was given about ablation by the Drs and the leaflets and online. There isn't much about peoples experiences. It is all generalised.

[denise1583]

I had the ablation for Wolff Parkinson white syndrome about a year and a half ago. They were able to go in and fix the pathway even though it was only millimeters away from my hearts natural pacemaker. There was little to no discomfort from the procedure. I had minor flutters for like a month or so after which went away.  I don't have to take any medications to maintain a regular heartbeat and I am back to running half marathons. Ablation was the best thing my doctor could have suggested. The only thing that isn't my "normal self" (aka pre recognition of WPW) is that I still can't handle a lot of caffeine ever since this whole thing presented itself as a problem. I would highly recommend it.

[achillea]

Thank you for your sensible description of your condition and conclusion!

[achillea]

Thank you for your sensible description of your condition and conclusion!

[ehawa]

Hello, I am 20 years old , I found out I had wpw only last year after having my first episode , from what I can remember, at 10 years old, I would be crying hysterically, never sent to anyone to be checked out , only told to rest and focus on my breathing. Sometimes they would come twice a year or more, stopping as I rested it away with a sharp ache and then normality. Last year however it came more frequently about 5 full blown out times and situations where it would last a few minutes then stop. I have been to the hospital 3 times in an ambulance. The first time they caught my heart beating over 210 bpm and stopped it with medication injected into my arm the other two times after giving me medication for it I went in due to side effects of tiredness, dizziness and shortness of breathe. My appointment for the ablation was on the 11th of Jan , before I went in I had a mini episode which lasted the whole day on the left side of my heart a bit like nsvt it didn't effect my whole heart. The ablation was very uncomfortable, they gave me a sedative but my heart was racing soo fast even though I tried to calm it down , they claimed I moved too much so they only managed to burn two areas when I was wheeled out  one guy said there was a 70% chance it worked the actual doctor then said there was a 50% chance it worked stating that I might need another but under general anaesthetic next time . I knew that it hadnt Worked , on my way home I had the same thing I had the day before surgery on the left side but it is more alarming to me now since I've had surgery , there has been tears and a lot of rest , they don't come on rapidly but I try to stop the situation getting worse by changing position which helps and stops when I lean towards my right side in an up right position  I can't do anything major at all , even going to the toilet started it off, I am getting ringing in my ears burning sensations in my chest, random nerves triggering on my neck arm and under my breasts , I'm just not having a great time and I'm dealing with anxiety to top it of due to the situation. I have been told to make my way to a and e or see my gp (they won't be much help ). I can barely walk due to the insertion into my groin and I'm just trying to stay positive. I know this post is quite old , just letting you know my situation and if it gets better I'll update. Does anyone know what the palps on my left side may be ? Sometimes it makes its way to the centre then stops accompanied at times with dizziness but I think that's just me hyperventilating?

[tom_h]

When I had my ablation for AVRT, I chose an electrophysiologist whon prefers to use general anesthesia for reasons exactly like you mentioned that may have rendered yourprocedure a failure.  If you didn't like your experience, there is no reason why you need to go back to the same electrophysiology group.  I'm sorry you had a bad experience, but don't give up on this.  Give it a couple of months for healing to set in before deciding on the next step.  It is very common to experience short runs of SVT and PVC's here and there during the recovery period.  I think I walked with a limp for a couple of weeks, and had to recover from a very large hematoma which drained down my thigh.  Take it easy for now and I hope your recovery proceeds.

[Lizzie567]

Could be pericarditis. Look it up

[MichelleP_3811]

It sounds like your pathway either regenerated or you may have a second pathway that is not unheard of.  I would say if it is interrupting your life as much as it seems it is I would push to have a second ablation.  Best of luck and keep us posted on how you are doing.

[Micmg23]

I had six pathways, I didn t know til I was 19,  had a simple ablations, and problem should be fixed

[tom_h]

Mitral Valve Prolapse or MVP is a structural issue with your heart and I can cautiously say that it does not cause a sudden racing heart.  Are you sure you heard MVP and not SVT?  The latter does most definitely cause tachycardia and is an electrical issue.  Wolff-Parkinson-White syndrome is a form of supraventricular tachycardia aka. SVT. aka PSVT

[sherry73]

long story short i was 9, out of the blue my heart banged, i turned every shade of blue & green, vomiting, pass out ext. finally 3 yrs latter all the doctors diagnosed my problem as mitro valve prolaps (sudden rapid heart beat). well by the time i had my 2nd child i had to be put in a delivery room in ICU & there they discovered that i now have WPW wolf parkinsons white syndrom. i was 20 yrs old  =(... & it just seemed to get worse, well at the age of 36 always had to leave work early due to sudden heart rate, pain. i ended up having to go to hospital over & over & over again so that i could have my heart stopped & restarted back to normal. my heart rate always got up to 247 beats a minute, so they finallly suggested for me to go to utah, university hospital to have a surgery called ablation. so i did & that was october 2010. my heart was then all good with some flutters here & there.. 19 months go by & i go to stand up-my heart banged-i layed on floor & it went back to normal. as time went by it got worse & i was thinking i needed surgery again. i seen dr. he put me on meds said i dont need surgery cause my heart fixes its self now before going into that atack mode that it use to do. but now my heart has totally shifted & i was put on medicine which i find does not work. ya know now anything at all that i do is very very hard to do, i cant even lean over to pick something up without my heart messing with me now or again!! its gottin worse in the last 2 months of the time i seen the dr.  today it banged & the heart rate was fast i was dizzy i ran outside cause i was alone, it corrected its self after about 15 seconds. the time frames are getting longer i just wish to have surgery again!!  =( i'm 39 yrs old, i have 3 beautiful children but....& hate to say this  but I AM SICK & TIRED of this problem.. worrying-being in pain-dealing with this for so many years that i don't want to feel or do this anymore!!!! the older i get the scarier it is as well as gets!!!  is there ANYONE out there that feels the way i do??  i cry but with a smile  thank you for listening  Sherry  

[Martin120196]

Hi my name is martin and I'm 19 from Birmingham  I have  wolff parkinson white syndrome and has had it for 19 years thus can sound scary to new people to the disorder but is quite simple i have been in every worse case senario I will go to deep conversation  with you please call me and i will answer every question possible for you
07941641523 UK mobile  

[hesterbox]

Just realise the drug I had to block the AV node is called adenosine. I had it when my WPW was diagnosed 6 years ago too.

[hesterbox]

Tom, thanks for your encouragement and I think you are right about the age factor :)

[hesterbox]

I had an okay day. Still not a great deal of energy and i didn't go to work.
I've been tired today.

I only had to take Metoprolol for 3 weeks before the ablation.
I had it 6 years ago and it really doesn't agree with me. My cardiologist asked me to put up with it for the 3 weeks to prevent a recurrence of crazy fast heartbeat. I also had to take flecanaide

I was on holiday for two of those weeks, thankfully because i spent much of my time lying on the sofa.
Metoprolol makes me exhausted for about 5 hours of the day while the effects of the day's dose are strongest. It also makes me nauseous and I have most of the common side effects.

I had to stop Flecanaide 2 days before the ablation and i didn't have to take Metoprolol any more after it.

That is maybe causing part of my emotional response to the ablation recovery time because I was so looking foward to having energy again with no Metoprolol.

I normally do 500 skips with a rope every morning as well as 20 minutes stretching and weight exercises.
It is now a month since I've had the energy to do this.

Mostly i'm feeling more patient now although I rather expected to feel lots better today after yesterday's improvement.
I took some homeopathic arnica on the evening of day 4 so i might have another dose. Who knows-it might help.

I've used natural remedies, good nutrution and exercise as health strategies all my adult life.
I only take allopathic medicines when I really have to. I'm grateful for it then.

[ebisky]

Hi,

I had an ablation for WPW almost a year ago. The first week after the surgery I was mainly feeling kind of out of it I think due to the beta blockers I was put on. Those can take a few weeks to start working proper and for your body to get used to the symptoms, so I'm not sure if that has something to do w/your issues. I also remember my inner thigh being sore due to the insertion site. They also inserted a catheter into my neck, but that didn't hurt much. Neither did my thigh, but it was tender for a week or so.

Besides that, I was getting PVC's quite regularly, but I think that was mainly due to my mood and anxiety related to the ablation. I think the surgery made the PVC's more sensitive to occurring, but I was getting them before the surgery as well. About 4 months after the surgery I was no longer getting any PVC episodes and haven't to this day either.

Haven't had any WPW symptom since the surgery. I still have the WPW signature on an EKG due to my rare situation (which I made a post here about), but no WPW symptoms to date. I did only get WPW episodes once or twice a year prior to the surgery, but coming up on a year after the surgery and nothing yet. I think after the 2 year mark of no symptoms I'll fully resolve any doubts I had/have about the procedure and put all this behind me.

I think in the coming weeks and months you'll start to feel better. I think a large part of an ablation is coming to terms with the idea that the thing(wpw) that could harm you is now gone/fixed.

[tom_h]

That sounds like decent progress.  Take it slow and steady.  I was 59 at the time, so just a couple of years older than you when I had it done.  We don't snap back as quickly as we would do when we were kids.  ...slow and steady does it.........

[hesterbox]

I went for a little walk to our local shop. It is only minutes away. I pushed my granddaughter in her stroller which was great as it was like a disguised walker. I was still rather slow but I enjoyed it.
I'll try and get out for another walk today.

I sat at the bench and did some dishes.
I made a quick easy pasta casserole for tea.
Changed Blossom's nappies a couple of times. Walked up and down with her a bit when she was crying.
Sat on the floor and played with her.
My other son her uncle calls it 'stealing baby energy'-it is certainly therapeutic. :)

I had a lie down on the sofa and a bit of a nap in the afternoon.
In the evening I moved quite fast when I realised one of our cats had caught a fledgling thrush. I got it off him and took it outside-down and up two flights of steps, herded the 3 cats back indoors. Phew. But I felt okay so that was a good test.
I felt more than ready for bed at 9.00pm but stayed up a bit later with my daughter-in-law. I was a bit light headed briefly, a couple of times after that and the chest ache got worse. I went to bed about 11pm and had a good sleep.
I woke up and got up for a wee while around 2.00am when my husband came home from work.
Then I had a good sound sleep until about 7.00am and woke up feeling more comfortable and with a sense of even more energy. YAY!
But I am not going to go to work today.
I'm a bit heart  achy and my groin is a little achy today too.

[demps123]

Good to hear! What sort of activity have you started doing? are you just doing some light walking or something around the house?

I think i will give myself a good week of rest before i do anything. Such as going back to work.

[hesterbox]

I had a much better day :)

[hesterbox]

Thank you everyone. I feel more positive today. I am going to do a bit of activity and plenty of resting.

[MichelleP_3811]

I did not have a transceptal puncture but I did have a few instances for the following week or so where I felt a sudden stabbing pain in my chest.  I only had maybe about 3 that were very short lived.  I surmise it had something to do with the burns.  The biggest concern would be if you had a high sustained rate of a fast beat for more and a second or two.  The fact that you state you had afib makes me wonder if your episode was related to that as opposed to your wpw.  My hope for you is that with some distance and a chance for your heart to rest up that any afib would not reoccur along with being cured of the wpw.  Take care.

[tom_h]

Well give a few more days, and stay with us at least while you recover.  Hope it feels better soon!  I think here in the US, left sided studies are primarily achieved by the transseptal puncture. Recoverees often report brief stabbing pain afterwards.

[hesterbox]

Thank you.It is really helpful just to read your replies. I feel less alone.

The cardiologists in my home town are not very accessible unless I'm in hospital and because WPW is fairly rare  there isn't anyone here who I can talk to who has a lot of experience. [In hospital I always ended up being a curiosity that the students woukd observe  : )  ]

When I went back to hospital the night that I got home, they did more ECGs, blood tests, monitored my blood pressure, oxygen, took blood samples and had me on a halter for about 6 hours.

I saw 2 cardiologists.
One said my admission ECG looked a little bit different to norm and he wondered if there were some singed cells that had woken back up.
He was not my on duty cardiologist, so really just checked as a courtesy because he diagnosed my WPW 7 years ago. He also referred me for the ablation a month ago, after a bout of fast atrial fibrillation that lasted about 4 hours with my heartrate up to 300 beats pm,  but mostly well over 200 bpm.

The on- duty cardiologist checked the pressure in my neck and then did an echocardiogram with a portable machine.
He said everything looked fine and my heartbeat was steady. He said to remember that I'd had catheters and burning in my heart and it needed time to recover.
So now I just don't know how much time before I should expect to feel good. And I think that I can't really ask the Drs for any more help or advice because they say I'm okay.
Yesterday I had some stabbing pains in the chest area but I just thought 'oh well-more wierd symptoms' and they went away.

I wondered about the left side issue but before I had the procedure they said if it was on the left side they would go through an artery instead of the vein and I'm not really sure how they do this.
I was in the theatre for about 3 and a half hours which doesn't seem comparatively long. The Dr said it took a while to successfully burn the accessory pathway and it certainly felt like it did.
I think I will ask for a copy of my notes when they get to the Dr. Then I will have a better understanding of what was done.

[tom_h]

As Michelle pointed out I was one of those rare few that avoided the transseptal puncture by threading the catheter through the overlapping closure that hadn't sealed up.  Perhaps it accounted for my seemingly fast recovery.

[tom_h]

It's a shame that you didn't find us sooner, because there are many of us here that have undergone the procedure and could have offered support.  I read your journal, but decided to answer you here in the event that others will find this thread in the future.

I was 59 at the time of my ablation for AVRT.  My SVT was very similar to yours and was initially suspected to be WPW, but turned out to be Circus Movement Tachycardia, a high rate, self sustaining type of SVT.

After the procedure, I was sent home the same day.  I'd say I felt fatigued for 4 or 5 days afterwards, and felt a little breathless if I climbed stairs, or walked up the driveway to fetch the mail from the box.  I did go back to work on the fifth day, and was able to drive the 50 miles each way. I skate a lot, and by the tenth day, I did some very light warmup laps with my son pacing me to keep me from going any faster.  I can tell you that I didn't feel my normal self.  After that, I continued to improve.  I'd say it took perhaps a month to really feel like my former self.

My leg:  They used both sides, but the right side was used the most.  I had a large hematoma which drained into my thigh and look horrible for nearly there weeks before slowly disappearing.  It got as far as my knee, and was sore to the touch.  I limped noticeably for 2 weeks following the procedure.  I'd say that hurt the most.  Oh...being a male, and having general anesthesia, I was catheterized.   It was removed prior to me leaving the hospital.  The seering pain upon peeing for the next few days was something else, but it finally got better too.

Heartache:  I felt this as well.  I was an intense ache in my heart that would cause me to pause until it.subsided.  My wife would look worried as I bent over a little and instinctively clutched my chest until it subsided.  Ibuprofen helped immensely during the recovery period.  I ad 17 burns for my ablation.

I had a bunch of PVC's during that period, and to this day continue to have occasional bursts of SVT which thankfully drop out after 5-12 beats.  I have not had any sustained runs though and can push myself to failure without any SVT.   My cardiologist gave me a stress test 6 months afterwards, jokingly welcoming me ontto his "pain train".  I managed 13 or 14 minutes on the standard test before finally punching out, panting in a pool of sweat.  No SVT though!

So I would suggest to you to give it some time.  Your heart has undergone trauma having been burned, and most likely internally pierced to reach the left side.  Unlessvsomethingnis very wrong, I think you will begin to see improvement soon.  If you physician says it's ok, I'd get out and do some walking and other activities to et your heart "working" again.

Good luck, and we're here all the time.

[MichelleP_3811]

The flutter and skipping feeling is likely ectopic beats.  A lot of people get them after an ablation but they should calm down after a while.  For everyone that time is different.  It is likely though you won't ever get rid of them and can be prone to them flaring up.  Mine were actually the cause of me falling into my fast beat for avnrt.  As I stated I had a bad bout of them 5 weeks post ablation.  After three months they settled down but it has taken a year for me to truly stop noticing them so much.  I think if you do experience them a lot try to not over exert yourself too much.  I continued to do my cardio routine and pushing myself too much may have delayed them calming down.  But they are a separate issue from the svt.  I wish someone had told me I had had them prior to having the ablation done but they are even less harmless than the svt so you don't need to worry about them too much.  Try to watch what you eat, over exerting yourself, and stressing out.  And again, hopefully with a little distance you will start to feel better soon.  Take care.

[MichelleP_3811]

The fact that you had your ablation on the left side, do you know if they had to puncture a hole to get over there.  There is some spot that is typically open that the doctor can thread through to get to the left side of the heart but for some it is closed up and the doctor has to puncture it to get through.  This I would think would may make recovery for WPW more difficult.  I personally was tired/short of breath for a couple of days but 5 weeks out experienced a super bad bout of pvcs and pacs that made me feel very sick.  Some people get them pretty bad after an ablation but they should calm down after a while but in general it can take a good 3 months to see good results.  Your scar line needs to form a bit so it could be why you had an episode.  I had a had a handful of short bursts of some sort of a fast beat since my ablation but I don't sense it is the same as my avnrt.  If you continue to have them then speak to your doctor.  As for feeling super tired I partly wonder if it is due to a puncture or how long they worked on you.  Revving up your heart as much as they do in an ablation can tire out the heart.  With a bit of time and distance your heart should regain strength.  But do give it time.  The heart is very resilient and can do some pretty good healing but the process is very slow.  That said, if anything is happening that is concerning to you do not hesitate to contact the doctor.  They have your case history and have a lot of experience to know if what you are feeling is normal or not. Hang in there, stay strong but try not to over do it for a while.  I do hope you feel better soon.  Take care.

[hesterbox]

I gad at least one episode of fast heartbeat and went back to hospital my first night home.
I am now often very aware of my heartbeat and i seems to flutter and skip sometimes.
I have a burny ache in my chest.

I had a lot of sedative during the procedure because I was initially scared and then the catheter insertion and the burning was painful.
At the end of the procedure I had a drug that blocks the sinus node momentarily so that they could check if the extra pathway was inactivated.
When I had a bleed at the catheter insertion site later I had another drug becuase the nurse put pressure on the vagus nerve when pressing on the bleed site in my groin and they had to put something in my line when my heart slowed right down and I passed out.
I am quite sensitive to drugs so your explanation makes sense.  
I'm only about 4 days past the procedure so I will just have to be patient and see what comes.

[Skippy80]

lacking in energy could be related to the stress this is causing you

have you been having a normal heart rhythm since or episodes of PVC/PAC/Tachy etc

Your lacing in energy could also be the drugs they used on you, sometimes they knock you the F out and other times they just make you drowsy deepening on the doctor and their methods. That could still be a factor in you feeling tired etc

the comfortability..well that would be personal to you. I would say if you are still feeling this way 7 - 10 days later then perhaps organize an appointment or a phone call to the doctor. Most literature i have read normally says about a week until you can resume normal activities