Aa
Apparantly Im just crazy
So I went back to my old EP doctor today for a three month follow up. When he came in our convo started good...talking about kids,my nursing school grades etc. Then he asked if my PVCs have been bothering me. I said yes and he asked to to elaborate. I told him about the pain/discomfort I have been experiencing as well as dizziness, etc. I then proceded to ask questions about my condition like where the exact spot was that was causing this and if I would be eligiable for an ablation. He said that I would NEVER need an ablation and despite my 20,000 PVCs a day I would NEVER get cariomyopathy. He was also rolling his eyes with every question.I then mentioned what we are learning in nursing school about PVCs and he got real angry and said "well maybe I should just go to nursing school then" then he like flipped out and told me that "maybe you are going into the wrong feild, you know too much and are too consumed with medical knowledge" and then told me "If you want a second opinion go get one" and walked out! By the time I left I was crying so hard I could barely see to drive home. He really hurt my feelings and I really got upset when he passed judgement on me for being educated about my condition and wanting to ask questions. I will NEVER go back there again so I guess now I have no heart doctor and he was the only EP in the area. Does anyone know if a cardio can preform the same duties as an EP?
OMG! I would have been crying too! That is really unbelievable! I would consider filing a complaint against him! There is absolutely NOTHING wrong with you having knowledge about your condition and it sounds like you should be in med school not nursing school...Maybe you can take over his practice and have a little compassion for those who seek answers and don't just sit back and do nothing to improve their health. I hope doctors read this forum and see how some in their profession are so unprofessional. I'm so sorry you had to endure that type of abuse and I personally would drive across the country before my insurance or me gave him another dime! Hang in there... you've done nothing wrong!
i cannot believe your story about the EP! I had a similar experience but not nearly as bad with a cardiologist who just kept blowing me off and making it sound like everything was in my head. I very quickly switched to another doctor. I now have a cardiologist and an EP doctor, both of which i love. This technique could work well for you because the cardiologist could monitor your concerns about the cardiomyopathy and could also just follow you in general. Once you reach the threshold that he thinks maybe an ablation may be necessary, then you could take on the task of finding an EP. I really think getting a regular cardiologist that you like and trust should be your first task. Also, one way to find another EP would be to contact your insurance company and ask them for a list of EPs that are covered under your plan. I am sure they have more than just the one, although they may be farther away from you. Again, you could see the EP only when necessary and could be managed by your regular cardiologist. Also, once you are in with an EP you could be managed over the phone for questions that come up between appointments. Good luck to you. I know that it is a very frustrating thing to go through.
I wish I could find real concrete evidence of what percentage of people with pvc's develop certain things like cardiomyopathy or the % of people who have pvc's that are malignant, I would start a spread sheet & journal and do some research on here of people that have these things vs the ones who don't.
When I was first told last year, I started researching because I wanted to know why, how, when etc and figure out what was wrong with me. All I've found are contradictions - few places give concrete numbers.
Ive read most pvc's are benign, but have seen anywhere from 1% - 5% are malignant, different research show different amounts. I haven't seen anything that show a percentage on who developes cardiomyopathy from pvc's, just that it's "very rare".
And I would think one of the community leaders - Momto3 , Jerry, Itdood etc could answer how to get a sticky, any of you know? I wish there was a question & answer thread up top that the doctors here answered to help alleviate some of the concerns that have been asked over & over - that would help new members alot. Not that it should include being able to ask questions, just some of the common questions we members ask and their answers.
When I was first told last year, I started researching because I wanted to know why, how, when etc and figure out what was wrong with me. All I've found are contradictions - few places give concrete numbers.
Ive read most pvc's are benign, but have seen anywhere from 1% - 5% are malignant, different research show different amounts. I haven't seen anything that show a percentage on who developes cardiomyopathy from pvc's, just that it's "very rare".
And I would think one of the community leaders - Momto3 , Jerry, Itdood etc could answer how to get a sticky, any of you know? I wish there was a question & answer thread up top that the doctors here answered to help alleviate some of the concerns that have been asked over & over - that would help new members alot. Not that it should include being able to ask questions, just some of the common questions we members ask and their answers.
Thats a great idea! I think this is an area where it may be biased but I think it might be helpful to use the group of people on here as a sample population of people with PVCs...and hey, it's worth a try! IDK how it could be put at the top, so maybe you know a way to do that? I would gladly participate!
"I wonder how they really know that it is rare?" I think it's alot more prevelant than they let on; just as they say pvc's are NOT life threatening LOL I've read pvc's supposedly have to be years on end to cause cardiomyopathy, but my EP told me above 20% daily and it could cause CM in a relatively short period of time. (just reading 1 old post here there were 4 people in that post dx with CM from pvc's)
Maybe we should put a poll up and see? Hmmm let's form some questions to ask - but remember we may only get results from the heart ryhthm section, so it would need to be put in the heart disease community also.
something like this:
Question - Do you have cardiomyopathy? If yes, what caused it?
#1 - Genetics
#2 - Heart Disease
#3 - Idiopathic
#4 - PVC induced (arrythmia-induced cardiomyopathy)
I don't know all to include, but something like that would work...can we sticky it up top?
Maybe we should put a poll up and see? Hmmm let's form some questions to ask - but remember we may only get results from the heart ryhthm section, so it would need to be put in the heart disease community also.
something like this:
Question - Do you have cardiomyopathy? If yes, what caused it?
#1 - Genetics
#2 - Heart Disease
#3 - Idiopathic
#4 - PVC induced (arrythmia-induced cardiomyopathy)
I don't know all to include, but something like that would work...can we sticky it up top?
I will try your Dr. if the Cleveland Clinic will not see me, I only live 3 hours from Louisville. I am trying to get help through their finacial assistance program because they do not accept my insurance and there is no way I can pay cash. I am waiting on the finacial rep to return my call...so we will see how it goes:)
I find it funny how every doctor says that PVC induced cardiomyopathy is so rare, yet I have ran across several people who have had this happen. I wonder how they really know that it is rare?
Thank you BTW, and I am determined not to let this EP prevent me from getting the medical help that I know that I need/deserve.
Good luck with your ablation, I will be thinking of you Monday! Please keep me posted!
I find it funny how every doctor says that PVC induced cardiomyopathy is so rare, yet I have ran across several people who have had this happen. I wonder how they really know that it is rare?
Thank you BTW, and I am determined not to let this EP prevent me from getting the medical help that I know that I need/deserve.
Good luck with your ablation, I will be thinking of you Monday! Please keep me posted!
I guess maybe the reason he doesn't want to consider ablation is because the number is reduced with the beta blocker? I was at 20% of my total beats in Jan, now I am at 1-3% or about 1000(very rare)- 3000 a day, but I still have the symptoms associated with them. I don't understand how he could say that I will never need and ablation and never develop cardiomyopathy? I think he was just annoyed and trying to shut me up! Of the people that I have talked with that get these high numbers coming from the left ventricle, at least 4 out of the 10 I have came across have developed cardiomyopathy....that seems like a likely senerio for me given my numbers and area are around the same. I am still trying to get into the Cleveland Clinic under their financial assistance program....I am not getting my hopes up though. For now I am stuck waiting to see if I develop cardiomyopathy. My numbers seem like they are on the rise even with the BB so I am scared that the BB was only a temporary relief.
no there is no one else on this side of the river(I live on the Illinois side of St. Loius) I tried a refferal line for Barnes Jewish Hospital in St. Loius but they do not have an EP that takes my insurance. So I am stuck:(
I cannot believe how unsympatheic and unprofessional that doctor is. WOW! I agree w/ Lisa. My PVC's started years ago, 500 plus a day, then 1000 plus, now 5 years later thay have been 40,000 plus for probably months. My EP is in Louisville, KY, Dr. John Mandrola. He is very well respected in this area and pretty much all he does is ablations, pacemakers, ICD's and has done them here since the early 90's. He will see you. I don't know how far away you are, but I know it does take a while to get in.
So, here I am, I have mild cardiomyopathy from my frequent PVC's and my EP says this is rare, but is definitely possible w/ 25,000 plus PVC's a day prolonged over a period of time.
I hope you are able to find a good EP. I was going to go to the Cleveland Clinic if my 2nd opinion couldn't help. We'll see, ablation Monday....
I wish you luck. You will get some answers. So sorry this has happened to you.
So, here I am, I have mild cardiomyopathy from my frequent PVC's and my EP says this is rare, but is definitely possible w/ 25,000 plus PVC's a day prolonged over a period of time.
I hope you are able to find a good EP. I was going to go to the Cleveland Clinic if my 2nd opinion couldn't help. We'll see, ablation Monday....
I wish you luck. You will get some answers. So sorry this has happened to you.
oh wow I'm sorry you had to go through this, the level of care from that dr sounds horrible. I would def get a 2nd opinion and an EP is the one to do ablations unless a cardio has both degrees I believe
Remember most dr's will treat 6,000 - 8,000 pvcs with meds, unless there's other problems. You'll find many posts from the medhelp drs here that have said normally anything above 15% - 20% of your 24 rate is consideration for surgery.
20,000 pvc's in a 24 hr period on a normal HR of 100,000 is 20% of your total 24 hr - which is considerably high and most ep's would look at surgery - there are some drs who do ablations for less than you're having.
Both my cardiologists & ep's told me my increasing number pvc's could lead to cardiomyopathy, as I posted before there's no guarantee and no guarantees that what you have won't lead to something else; they can't know. None of my dr's ever suspected I would have a malignant form of pvc's even from the amount I had or any of my testing.
Did I start out with over 50,000 pvc's? No, I started with an occassional thump in my chest, sob etc - I would rather see someone err on the side of over reacting to pvc's than to go through what I've gone through the past year, so keep your chin up and find another dr who will take your needs seriously and one that you trust in.
Remember most dr's will treat 6,000 - 8,000 pvcs with meds, unless there's other problems. You'll find many posts from the medhelp drs here that have said normally anything above 15% - 20% of your 24 rate is consideration for surgery.
20,000 pvc's in a 24 hr period on a normal HR of 100,000 is 20% of your total 24 hr - which is considerably high and most ep's would look at surgery - there are some drs who do ablations for less than you're having.
Both my cardiologists & ep's told me my increasing number pvc's could lead to cardiomyopathy, as I posted before there's no guarantee and no guarantees that what you have won't lead to something else; they can't know. None of my dr's ever suspected I would have a malignant form of pvc's even from the amount I had or any of my testing.
Did I start out with over 50,000 pvc's? No, I started with an occassional thump in my chest, sob etc - I would rather see someone err on the side of over reacting to pvc's than to go through what I've gone through the past year, so keep your chin up and find another dr who will take your needs seriously and one that you trust in.
Hi, I totally sympathize with you. I had very symptomatic PVC's for 2 years before I could get someone to take them seriously. 20,000 is really low as far as quantity, but if you are having symptoms, I think you need to find a doctor who is more sympatheitc to you and is willing to try some treatment modalities to make you more comfortable (even if you really are not a condidate for ablation). Unfortunately EP is EP and not cardiology. Is there really no one else in your area?
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