Aa
WPW and Left Side and Failed Ablation
Hey there-
I'm a 32 year old female who never knew I had Wolff-Parkinson-White Syndrome until one day I woke up and all of the sudden I felt dizzy and my heart wouldn't relax and I got all sweaty and felt hot and I yelled to my husband who came in and said I just started bobbing around until I fell over.
He brought me into the bedroom where I apparently was not breathing was turning blue and had no pulse. He did a rescue breath on me and I came back.
Anyhow I had an ablation procedure and during that they found out that my defect is on the left side and in the coronary sinus. They tried for 8 hours and did not burn it.
Needless to say I'm on flecainide 100 2x a day and 25 toprol 1x a day. I absolutely hate the side effects from the meds. I have vision disturbances, no appetite, no energy (although even though I was a gym rat, my energy level had been really bad the past year or so leading up to this), chest tightness, and increased anxiety. When I was on a higher level of metroprolol (before I switched to the name brand toprol) I had great bouts with depression and severe cloudy thoughts. Also right now it is hard for me to fall asleep before 4am no matter how exhausted I am.
I have had 2 trips to the ER since coming home from the surgery .Once the day after and once a few nights ago. But I have had a few episodes where the tightness in my chest makes me have my hubby drive me to the ER parking lot just in case.
I wondered if anyone had WPW in the coronary sinus of the heart like me and was lucky enough to have the ablation work? Or how about anyone like me have a failed one and try again and have the 2nd time be the charm? I want to have kids and I don't want to be on the meds even if I didn't want to have kids.
I'm a 32 year old female who never knew I had Wolff-Parkinson-White Syndrome until one day I woke up and all of the sudden I felt dizzy and my heart wouldn't relax and I got all sweaty and felt hot and I yelled to my husband who came in and said I just started bobbing around until I fell over.
He brought me into the bedroom where I apparently was not breathing was turning blue and had no pulse. He did a rescue breath on me and I came back.
Anyhow I had an ablation procedure and during that they found out that my defect is on the left side and in the coronary sinus. They tried for 8 hours and did not burn it.
Needless to say I'm on flecainide 100 2x a day and 25 toprol 1x a day. I absolutely hate the side effects from the meds. I have vision disturbances, no appetite, no energy (although even though I was a gym rat, my energy level had been really bad the past year or so leading up to this), chest tightness, and increased anxiety. When I was on a higher level of metroprolol (before I switched to the name brand toprol) I had great bouts with depression and severe cloudy thoughts. Also right now it is hard for me to fall asleep before 4am no matter how exhausted I am.
I have had 2 trips to the ER since coming home from the surgery .Once the day after and once a few nights ago. But I have had a few episodes where the tightness in my chest makes me have my hubby drive me to the ER parking lot just in case.
I wondered if anyone had WPW in the coronary sinus of the heart like me and was lucky enough to have the ablation work? Or how about anyone like me have a failed one and try again and have the 2nd time be the charm? I want to have kids and I don't want to be on the meds even if I didn't want to have kids.
Just wanted to clarify that the two posts above by "MossTess" are actually from me - ptadvoc8. Not sure how that happened except that my computer is dying and I am posting from the library and somehow someone else must have been logged onto Med Help here and did not log off so when I went to the Med Help forum I automatically thought I was logged in as me since it let me post, and went right ahead and posted...
There are pluses and minuses to both cryo and RF -- cryo is less thrombogenic, the lesions are more controllable and, as you noted, can sometimes be reversed so is often used near the "natural" pacemaker areas of the heart. I believe cryo is also less "painful" both during the procedure and in recovery than RF. However, cryo generally takes quite a bit longer, which adds to procedure times and has a slightly lower overall long-term success rate.
I specifically chose an EP specialist who had the training, experience and technology to do either or both so that I could get the best treatment for my individual case. My procedure was a bit longer than most for a simple left free wall pathway, but my specialist also checked for any hidden pathways and he went back to double check my pathway after he let it "set" for an hour just to make sure it was still NOT conducting.
Despite the fact that I had a great experience, I have found recovery much more slow than I expected. I, too, had some mild chest pain for a few days, especially when lying down and have had some occasional palpitations, as well as a wide variation in heart rate and some fatigue. However, I'm "elderly" so that is maybe to be expected! Also, my doctor said it takes between 3 and 6 months for the heart to heal and for them to say with any certainty that the ablation was a success, so the fact that you are back doing some running sounds wonderful. Best wishes on your speedy recovery!
I specifically chose an EP specialist who had the training, experience and technology to do either or both so that I could get the best treatment for my individual case. My procedure was a bit longer than most for a simple left free wall pathway, but my specialist also checked for any hidden pathways and he went back to double check my pathway after he let it "set" for an hour just to make sure it was still NOT conducting.
Despite the fact that I had a great experience, I have found recovery much more slow than I expected. I, too, had some mild chest pain for a few days, especially when lying down and have had some occasional palpitations, as well as a wide variation in heart rate and some fatigue. However, I'm "elderly" so that is maybe to be expected! Also, my doctor said it takes between 3 and 6 months for the heart to heal and for them to say with any certainty that the ablation was a success, so the fact that you are back doing some running sounds wonderful. Best wishes on your speedy recovery!
Hi,
I'm so sorry you have had such a frightening and challenging experience with your WPW. I also have WPW with a left-sided accessory pathway and on 17 September of this year (just a few weeks ago) had a cryoablation procedure at Mayo Clinic in MN. Although I am still recovering (for some of us it is a longer process than for others!) and we won't know for sure whether or not is was a success for several more months, my cardio seemed very positive about my procedure and I, too, felt that for the most part, it went extremely well, so despite being something of a skeptic about ablations, I am cautiously optimistic that I may have a successful long term outcome.
My accessory pathway was "left free wall" and was much simpler to deal with than what yours sounds like, and while I am not familiar with all the particulars, I am aware that the coronary sinus is a very tricky area to ablate. I would definitely suggest giving the Heart Rhythm Center at Mayo Clinic in Rochester MN a call to discuss your situation. After being told various things about my condition by different specialists (many of which were conflicting) I "self-referred" to Mayo and am COMPLETELY glad that I did. On my initial call, I spoke to one of the nurses at the Rhythm Clinic and gave her my basic info. She checked with their specialists and then had me send all my records so the specialists could study them. After looking at my records they decided which of their specialist EPs would be best for my case then they got back to me and told me they could consult with me, do some tests and discuss whether or not ablation was an option.
I can't say enough good things about Mayo Clinic! I showed up at the clinic on a Tuesday morning and spent all that day and the next day having consults and tests. After a lengthy, informative, respectful and compassionate consult with my EP specialist, I went in the next day, a Thursday morning, for my ablation. The quality of care was absolutely outstanding, the technology available was top notch and the kindness and caring attitude of ALL the staff was remarkable.
There are other facilities that I am sure are equally as good, but the thing that made Mayo a good fit for me was that they are committed to delivering "patient centered" care -- I wanted cryo, not RF so they said if they could safely and successfully use that method, they would definitely accommodate me. I wanted a retrograde aortic approach to the left atrium (rather than a transeptal puncture) so they said if they could successfully and safely do it that way, they would. My specialist spent a great deal of time discussing with me what I wanted and needed from this procedure, also talked about alternatives to ablation and shared his concerns and opinions on my condition in particular, as well as his knowledge and experience with WPW in general. When I left his exam room I was completely confident for the first time in over 20 years that I could finally just leave it in my doctor's hands because I trusted his knowledge, his ethics and the Mayo facility to do what was in my best interest.
I have taken Toprol for over 10 years and found it to be the drug I have tolerated best. I am still on it until at least 3 months post ablation procedure, but hope to taper off if my ablation was successful. While I realize how frustrating and exhausting having WPW arrhythmia can be, I would urge you to keep trying to find treatment that works well for you -- keep asking, keep researching and keep hoping -- just remember to take time to "LIVE", too! And, if there's nothing they can do now, that could easily change -- when I was first diagnosed, open heart surgery was the only "cure" for WPW. In the last 20 years advances in ablation technology have come a long way, so there is always hope.
I'm so sorry you have had such a frightening and challenging experience with your WPW. I also have WPW with a left-sided accessory pathway and on 17 September of this year (just a few weeks ago) had a cryoablation procedure at Mayo Clinic in MN. Although I am still recovering (for some of us it is a longer process than for others!) and we won't know for sure whether or not is was a success for several more months, my cardio seemed very positive about my procedure and I, too, felt that for the most part, it went extremely well, so despite being something of a skeptic about ablations, I am cautiously optimistic that I may have a successful long term outcome.
My accessory pathway was "left free wall" and was much simpler to deal with than what yours sounds like, and while I am not familiar with all the particulars, I am aware that the coronary sinus is a very tricky area to ablate. I would definitely suggest giving the Heart Rhythm Center at Mayo Clinic in Rochester MN a call to discuss your situation. After being told various things about my condition by different specialists (many of which were conflicting) I "self-referred" to Mayo and am COMPLETELY glad that I did. On my initial call, I spoke to one of the nurses at the Rhythm Clinic and gave her my basic info. She checked with their specialists and then had me send all my records so the specialists could study them. After looking at my records they decided which of their specialist EPs would be best for my case then they got back to me and told me they could consult with me, do some tests and discuss whether or not ablation was an option.
I can't say enough good things about Mayo Clinic! I showed up at the clinic on a Tuesday morning and spent all that day and the next day having consults and tests. After a lengthy, informative, respectful and compassionate consult with my EP specialist, I went in the next day, a Thursday morning, for my ablation. The quality of care was absolutely outstanding, the technology available was top notch and the kindness and caring attitude of ALL the staff was remarkable.
There are other facilities that I am sure are equally as good, but the thing that made Mayo a good fit for me was that they are committed to delivering "patient centered" care -- I wanted cryo, not RF so they said if they could safely and successfully use that method, they would definitely accommodate me. I wanted a retrograde aortic approach to the left atrium (rather than a transeptal puncture) so they said if they could successfully and safely do it that way, they would. My specialist spent a great deal of time discussing with me what I wanted and needed from this procedure, also talked about alternatives to ablation and shared his concerns and opinions on my condition in particular, as well as his knowledge and experience with WPW in general. When I left his exam room I was completely confident for the first time in over 20 years that I could finally just leave it in my doctor's hands because I trusted his knowledge, his ethics and the Mayo facility to do what was in my best interest.
I have taken Toprol for over 10 years and found it to be the drug I have tolerated best. I am still on it until at least 3 months post ablation procedure, but hope to taper off if my ablation was successful. While I realize how frustrating and exhausting having WPW arrhythmia can be, I would urge you to keep trying to find treatment that works well for you -- keep asking, keep researching and keep hoping -- just remember to take time to "LIVE", too! And, if there's nothing they can do now, that could easily change -- when I was first diagnosed, open heart surgery was the only "cure" for WPW. In the last 20 years advances in ablation technology have come a long way, so there is always hope.
"my dreams and depression and confusion is way better on Toprol"
hi, you probably know this but I'll mention it anyway: the difference in effect is likely because the Toprol, being time released, achieves a lower Peak Plasma Concentration than does the metoprolol.
So, you might mimic those pharmacokinetics somewhat by taking the metoprolol with say... a big meal. Fat in a meal slows down transit time even more.
Or have you checked if you can take two half-doses per day, to reduce PPC?
Also, which metoprolol are you taking, succinate or tartrate?
hi, you probably know this but I'll mention it anyway: the difference in effect is likely because the Toprol, being time released, achieves a lower Peak Plasma Concentration than does the metoprolol.
So, you might mimic those pharmacokinetics somewhat by taking the metoprolol with say... a big meal. Fat in a meal slows down transit time even more.
Or have you checked if you can take two half-doses per day, to reduce PPC?
Also, which metoprolol are you taking, succinate or tartrate?
"I have unhappy dreams every night"
Jerry, I'd read one person saying that melatonin helped them sleep peacefully through the night. I think it was on, of all places, some Oprah forum. Well, you never know.
Jerry, I'd read one person saying that melatonin helped them sleep peacefully through the night. I think it was on, of all places, some Oprah forum. Well, you never know.
I just had ablation for a variation of WPW. I was burned on the left side only. I am not sure of my outcome yet, sometimes I feel great, other times very bad. I don't know about a second ablation.
You said they did not burn. I know of one person who did also not get burned because they thought it would give her a pacemaker. My understanding is burns are not reversible. However, with "cryoablation" sites can be tested first with light freezing. This might make for more fine tuned ablation, less burns in healthy areas. They temporarily freeze you to see if that spot is good to ablate or not. I would have liked access to that newer technology. Was not an option for me, but you may have access.
I also have tightness in my chest, with me, from ablation. I don't lay on my back. That makes it worse. I lay on my right side only. Eases the tightness, allows for more satisfying breaths. Elbows out and away.
I, pre ablation, did light running every second day, while taking atenolol. It was harder than without atenolol, and it brought on svt but during the run my heart was in harmony with me. Running, after breaking through some kind of physiological barrier, had the effect of giving me about a two day buffer against svt. I could take less meds. I have started light running again the past few days and would say it has had a positive effect. It also relieves stress.
This has been my experience, but I would not presume it certain to help you. Although I hope it does to at least some extent. Talk to your doc.
My thoughts are with you,
G
You said they did not burn. I know of one person who did also not get burned because they thought it would give her a pacemaker. My understanding is burns are not reversible. However, with "cryoablation" sites can be tested first with light freezing. This might make for more fine tuned ablation, less burns in healthy areas. They temporarily freeze you to see if that spot is good to ablate or not. I would have liked access to that newer technology. Was not an option for me, but you may have access.
I also have tightness in my chest, with me, from ablation. I don't lay on my back. That makes it worse. I lay on my right side only. Eases the tightness, allows for more satisfying breaths. Elbows out and away.
I, pre ablation, did light running every second day, while taking atenolol. It was harder than without atenolol, and it brought on svt but during the run my heart was in harmony with me. Running, after breaking through some kind of physiological barrier, had the effect of giving me about a two day buffer against svt. I could take less meds. I have started light running again the past few days and would say it has had a positive effect. It also relieves stress.
This has been my experience, but I would not presume it certain to help you. Although I hope it does to at least some extent. Talk to your doc.
My thoughts are with you,
G
Hi-
Thanks for the nice words!
One thing I wanted to ask if you is if you ever thought about trying Toprol xl (name brand) instead of Metoprolol? I know they are supposed to be one in the same, but my dad found that they actually have different release mechanisms! I was able to tolerate Toprol better and my dreams and depression and confusion is way better on Toprol. One problem, its way more expensive...but I'm going to try to afford it no matter what just because of how much better it is.
Thanks for the nice words!
One thing I wanted to ask if you is if you ever thought about trying Toprol xl (name brand) instead of Metoprolol? I know they are supposed to be one in the same, but my dad found that they actually have different release mechanisms! I was able to tolerate Toprol better and my dreams and depression and confusion is way better on Toprol. One problem, its way more expensive...but I'm going to try to afford it no matter what just because of how much better it is.
COMMUNITY LEADER
My sympathy to you and your husband, it is real hard to even read about someone so young has serious heart problems. The good side is you should have the physical strength to deal with surgery/ablation/treatment... if you just can keep an optimistic can-do attitude.
I also understand WPW does respond to ablation, if the doc can find the right spot, it seems. In any case it seems like you should give ablation another try if the doctor has any optimism it will help/work.
I take heavy dose Metoprolol, 100 mg twice a day, to lower my AFib driven HR. I think I have gotten used to it, and my tiredness is not as bad as it was. I have unhappy dreams every night, however, and I think the BB is part of the driver of that. I do get sleep, however and just try not to think about the coming dream mess when trying to go to sleep.
I also understand WPW does respond to ablation, if the doc can find the right spot, it seems. In any case it seems like you should give ablation another try if the doctor has any optimism it will help/work.
I take heavy dose Metoprolol, 100 mg twice a day, to lower my AFib driven HR. I think I have gotten used to it, and my tiredness is not as bad as it was. I have unhappy dreams every night, however, and I think the BB is part of the driver of that. I do get sleep, however and just try not to think about the coming dream mess when trying to go to sleep.
Have an Answer?
You are reading content posted in the Heart Rhythm Community
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
