Aa
Aa
A
A
A
Close
967168 tn?1477584489

I'm really angry

Sorry this is a rant; I hope some of you will understand what I'm going through right now.

I remember my EP sitting on the side of my bed, shaken over my surgery - tears in his eyes because he almost lost me during surgery shaking his head telling me I SCARED his team....him drawing me a picture of the heart showing me where he did my surgery and talked about the lower thin back part of my heart and not being able to ablate more because it was too dangerous....

I've spent a year telling others that and thinking that's what he did and come to find out that's not even the place he ablated!

I'm angry at him for not telling me the truth and wondering why, what purpose did he have for telling me this and questioning everything he told me in the 6 months I saw him. I'm wondering about everything now and I will need to start over for a search in finding answers.  Why can't doctors just be honest, straightforward and tell patients what's really going on?

Someone pointed this out - my PVCs originate from the RVOT; which anatomically sits beside the HIS bundle in the right ventricle just below the pulmonic valve and no where near the bottom part of the heart. (hope I copied this correctly)

This is what my EP wrote in his report:

"The pvc's were that of a left bundle inferior axis with a notched QRS complex across the precordial leads in a transition between V3 & V4, consistent with a right ventricular free wall outflow tract site.  It was also positive in both lead V1 and aVL consistent again with a more posterior site within the RV outflow tract. The PVC's were mapped to a location that existed in the posterior to free wall area of the RVOT."

What did I miss? this has been in my journal for a year and I never even realized the discrepancy; maybe I've missed something else too?

Did he somehow miss something on my MRI for ARVD and my cardiologist was right - if it walks and quacks like a duck it's usually a duck was right that it is ARVD? Maybe ARVD is really my problem since alot of my symptoms are relating to cardiomyopathy; or is it HCM?  I got a confirmation from the founder of Brugada that he was 99.0% positive no on Brugada, so I don't believe it's that.

I'm angry because I've spent a year believing my 4 children were safe from anything genetic because I trusted a doctor again.  I'm just really bummed that I have to start looking for a good doctor who takes my insurance again all over and start at the beginning and try to figure out who to trust.
Best Answer
995271 tn?1463924259
Hi Lisa, I thought the only sure-fire way to diagnose ARVD is through biopsy.  

Any other way depends on meeting a bunch of criteria, as you probably know.  It's going to be prone to assumptions, opinions, guessing, making judgment calls.  If one of the criteria is borderline you will end up in limbo as you'll get a different answer depending on who you ask.
17 Responses
Sort by: Helpful Oldest Newest
967168 tn?1477584489
I found some great info on HCM and explains things in easy to read detail:

http://www.cardiomyopathy.org/assets/files/BHF_HCM_FINAL_28_Sept_09.pdf

everyone please read this information - 1 out of 500 people are affected by one form of it and it's extremely easy for doctors such as mine to misdiagnose
Helpful - 0
967168 tn?1477584489
I'm finding out more and more that my doctors didn't tell me.  I finally got my cardiac cath results back; been fighting with them a year.  I'm going to have to find a way to get all my hospital records - they charge $1 page @ 282 pages! that doesn't include the price for the films

5 days of no sodium loading or extra water and I am starting to feel almost completely normal...alittle fatigue, small sob; some feet/ankle swelling, but I haven't noticed anymore of my abdominal swelling going down, but it may take time for that (could be GYN related).

I'm reading on diastolic dysfunction and finding all kinds of info, but not what causes the pressure to be elevated, any clue?

here's the results - 8/28/2009 Cardiac Catherization (ablation was  8/26/2009)

Hemodynamic assessments demonstrates mild systemic hypertension and moderately elevated LVEDP.

The coronary circulation is co-dominant.  There was no angiographic evidence for CAD. (that's the only thing they told me previously)

Aortic Pressure (S/D/M) 120/70/90
Left Ventricle (s/edp) 120/34

There was also an ECG that accompanied it during the procedure -

8/28/2009     EKG (pic is in my profile)
Vent Rate:          60
PR Interval         134
QRSD                 96  
QT/QTc             430/430  
P/QRS/T Axes   56/70/42

notes: Electronic Atrial Pacemaker; Low Voltage QRS;  borderline ECG when compared with ECG of 8/27/2009; electronic atrial pacemaker has replaced sinus ryhthm

I find it interesting that I had a borderline ecg when they told me everything was fine and released me from the hospital the day after this was done. Electronic Atrial pacemaker has replaced sinus ryhthm...never read that before.

After I had the cath done, they implanted my PM/ICD.
Helpful - 0
967168 tn?1477584489
Here's some info on VT and HCM - I thought I had read it; but it doesn't point to what causes the VT episodes.

http://www.webmd.com/heart-disease/tc/hypertrophic-cardiomyopathy-symptoms

"Sudden death may occur from the onset of ventricular tachycardia or other dangerous arrhythmias. A genetic factor appears to influence which people with hypertrophic cardiomyopathy are more prone to sudden death. Other risk factors for sudden death include severe obstruction of the left ventricle, multiple fainting (syncope) episodes, recurring episodes of ventricular tachycardia, and an abnormal drop in blood pressure during exercise."
Helpful - 0
967168 tn?1477584489
The easy part to answer is - my MRI said inconclusive for ARVD; so we ruled that out because the measurements were no where needed for that and nothing was seen on it [why it said inconclusive when nothing was seen I have no clue - why not just say negative]

My VT was caught on all my tests BUT when I send a request specifically for the EKG strips accompanying my tests; they will not send them.   The only thing I have to go by are the reports from my doctors and what they tell me, I may call the hospital and if they can send just the EKG strip from surgery.

I know very little about HCM and been reading/talking others who have it - the HCMA [www. 4 hcm. org - no spaces] has alot of info.  Pvc's; palpitations and VT seem to be very prevelant; but then so does AFib; SoB, CP; lightheadeness and fainting .

My echo said I have concentric LVH and my cardiac cath said I have non ischemic cardiomyopathy 40% ef; which my doctor could not explain to me and said since I didn't have high bp or symptoms at that point we would watch it.  Hypertrophic cardiomyopathy (HCM) and CLVH are basically the same thing.  CLVH simply means that the left ventricle has hypertrophied, and it's "concentric" meaning all throughout, instead of one place being thick, the whole thing is.

Undiagnosed HCM with saltloading and meds to raise bp could certainly account for many of my symptoms and could cause me to develop DCM & heart failure; there's a ton of posts about this on the expert forum.

I won't know for sure unless I get to a dr who knows about HCM to rule it out - I've read that it can go on for years without a correct dx because doctors often mistake it for other things.

Soooo many questions still, why didn't they look into HCM/LVH, if they didn't know what caused my HR/BP to tank and they've never heard of a patient doing that, why didn't they look into it further or test for something else, could they have tested for HCM when they did the cardiac MRI? no mention of HCM/LVH in the test, why didn't they do a biopsy when I had 3 procedures done in 1 week; why didn't they do a different test when my pulmonic valve was not visualized; why no other genetic testing once they ruled out ARVD; why no tests or follow up when I complained in Jan & April 2010 of painfully swelled feet/legs and they noted +2 edema & pitting in LE's

I can't fathom why my EP would tell me he ablated one spot and describe in detail plus draw a picture where it was and then now to find out his report says something completely different. If it weren't for someone talking to me about this, I would have never picked up on it and started to question things - even if it turns out to be something completely different that's ok - at least I'm starting to find answers now.
Helpful - 0
1124887 tn?1313754891
Hello,

First, I must say, I have no idea how an EP works, the closest I've ever been to an EP is being kicked out of his office with a message that he was going to take legal actions against my PCP for referring me there, I had absolutely nothing to do there.

Second, there are several things that don't make sense here. You mention LV hypertrophy, which (of course) is possible, but it should not explain your PVCs, because they origin from your right ventricle. They are conducted with a LBBB, which means your right ventricle is activated before the left one.

Then again, we don't know if the are the PVCs on your EKG that causes your VT. You could ask for an EKG reading of your VT (and post it here) but it's a bit worthless. None of us are qualified to say something specific about your VT anyway, so you should really find a doctor you trust and give him the EKG readings.

You mention ARVD. It should not affect your LV (and you mention a reduced EF from 55-60% to 40%). There are diagnostic criteria for ARVD, you can read them here:

http://www.arvd.com/diagnosis_crit.html

The only thing I'm sure of, is that this doesn't happen "out of the blue". Another fact is that RVOT ectopics (in a structurally normal heart) usually are completely benign, so there probably are some structural changes. If I could recommend one thing, it would be to get a complete echocardiography of your RV, where the pulmonary artery outflow tract is clearly visible.

Best wishes =)
Helpful - 0
967168 tn?1477584489
I found a doctor through the HCMA and going to call this week to make an appointment for a consult and eval. yay!

In the meantime I am 99% positive I do have concentric HCM; and possilby CHF.   I've talked to a few others from the HCMA and my ICD forum.  I'm still shaking my head at the pieces of the puzzle going together and wish that I had someone else look at my results earlier instead of trusting my doctors.

The ones I talk to about my symptoms & the way they're worsening think I should go be seen right now, but I can't do that to my family. I am already over $6,000 in medical debt that my insurance didn't cover that I've been paying off slowly.  The small business we own has lost about 40% of it's customers due the economy the past year and I had to cut my pay by 1/2, sometimes more so I was no longer eligible for health insurance and cobra was $1000 a month just for me lol  at least the PCIP is $653 which is about what I make per month.

why can't anything ever be easy
Helpful - 0
967168 tn?1477584489
thank you Jerry I am going to read that right now; I will let you know what I find out and thanks for the thoughts and prayers I really appreciate them
Helpful - 0
612551 tn?1450022175
COMMUNITY LEADER
I have not used the Cleveland Clinic but looked and think this link will get you were you can ask about it online: http://my.clevelandclinic.org/heart/default.aspx where I assumed you want a heart specialist.  The details of the discussion between you and itdood are way over my head, so I stopped trying to understand... still I understand you are suffering and my prayers and thoughts are with you.

As I may have mentioned I have a friend/colleague who used the CC services and I can ask him for suggestion if you would like to know what he thinks.  He was/is medicare covered but I think he had to pay for the CC services out-of-pocket and considered it worth it.  The discussion was about AFib, albeit he has several other complications.  In my case it is just AFib, oh yes, I'm losing my hearing and the eyes can't be far behind but then I've earned it - age, the universal fatal disease as a good friend here on this Community once put it to me.  
Helpful - 0
967168 tn?1477584489
oh wow I found this thread http://www.medhelp.org/posts/Heart-Disease/-Symptoms-of-HCM/show/1226506 about symptoms of HCM and I found this interesting:  "If a person with HCM were to take nitroglycerin, the symptoms would worsen and the nitroglycerin could even cause a catastrophic deterioration in the person's condition"

which is exactly what happened to me during my TTT after they gave me a dose of nitro
Helpful - 0
967168 tn?1477584489
I'm still trying to find enough info on HCM; I have read it's a bit different when it's concentric.  I'm arming myself with everything I can so when I go to the cardio; I'll know what I want to ask.

Its scares me to think that I listened to what they had to say and I've been striving for their 7-10g of sodium daily and this maybe have done more damage than good if it is HCM.

My sob has gotten progressively worse where I noticed about a month or 6 weeks ago problems when I lay flat, with some weird coughing spells if I do lay on my back.  My doctors did note in Jan & March 2010, increasing edema in my feet & legs, but it's is so severe now, some days I can't tell I have toes; and my feet/ankle area are numb and painful alot of the time to where I can't walk and I noticed some increasing abdominal swelling.

thanks itdood; I'm going to ask for a genetics test to be done also - I want to find out what it wrong and get it corrected or cured
Helpful - 0
995271 tn?1463924259
I thought the same thing about your EP study, would have been an opportunity to get a biopsy.  It's a shame they missed it then.    it is what it is.

HCM seems to be one of those criteria-based diagnoses too.  The best I can tell from the research is that it's wait and see.  An echo every few months to chart any progressions would be a good idea.  If there's any progression then it's medication.

From what I understand HCM can develop either due to pressure issues or genetics.  There's a genetic test but it's not very accurate.  If you couple the genetic test with imaging and other studies, detection accuracy goes up.
Helpful - 0
967168 tn?1477584489
I chuckled your your comment :P  

I just don't understand the medical profession; we as patients trust them and I've had more than my share of seemingly good doctors overlook, coverup, hold things like this that we should be told and then I am made to pay for one of my doctor's incompetence because I didn't find out for 2 1/2 years about an EKG that first showed my problem - statute of limitations is 2 years and no attny will take my case.

I shudder when I think what's going to happen to my medical care once the new plans go into effect; I lost my insurance 4+ months ago and got on the state's medical pool but I'm still waiting to be able to be seen for 2 more months because of the 6 month rule of non insurance.  Luckily with my medical problems they already told me I would be accepted but FL has one of the highest rates lol $653 monthly so I guess that will be a great diet plan rotfl

Thanks Jerry you always put a new perspective on things; can you tell me how I get my info to CC or who I talk to about sending? I have 90% of my medical records and can get the rest.

Helpful - 0
967168 tn?1477584489
Thanks =)  Does Dr Natale deal with CM? if so can you please pm me his info; I'll see if he's on my plan
Helpful - 0
612551 tn?1450022175
COMMUNITY LEADER
Very sorry to read of you difficulty... and I thought the behavior you describe was the province of politicians, not medical doctors.  Either way we are the losers.  

I have thought about changing Cardiologist, but being on Medicare now I'm not sure I can find one to take me.  This too is going to get worse.  

The Cleveland Clinic will provide advice for a fee if you have medical tests and diagnosis you can send them.  I think their advice is reasonable at that level, hundreds rather than thousands of dollars.  I do not know this personally but I have a colleague and fellow AFib'er who was satisfied with what he got that way from CC.

Wishing some real good news and success and SOON!
Helpful - 0
996946 tn?1503249112
Hi Lisa...sorry for all you've had to go through.  I wish you could go to my Dr.,  he's in Austin, Tx. and is supposed to be one of the very best, Dr. Andre Natale.  If you decide to check into it, send me a PM and I'll send you his phone #.
Helpful - 0
967168 tn?1477584489
Itdood, thanks thats what I thought too; and someone in the heart disease community said also when I asked about HCM.

Another question about my EP/Cardiologist is why didn't they do a biopsy when they suspected ARVD and the MRI was inconclusive - they had 3 days after my ablation to do this while I was in the hospital.   I had a Cardiac Cath and PM/ICD implant - they could have done it then or kept me and did the procedure separately, I don't understand it.

If I understand correctly, my dx is Concentric Left Ventricular Hypertrophy - if so I could handle them telling me that - I don't have HBP due to ANS problems and if it is HCM, they overlooked such a tiny detail they have years of experience 20+ because of this.  I'm told alot of doctors miss this because they're unfamiliar with genetics, and it's an easy thing to overlook.

now it's back to research CLVH/HCM and Aortic valve stenosis so I can be informed what to ask the new doctors...any input is greatly appreciated
Helpful - 0
Have an Answer?

You are reading content posted in the Heart Rhythm Community

Top Arrhythmias Answerers
1807132 tn?1318743597
Chicago, IL
1423357 tn?1511085442
Central, MA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
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.