Family Determined to Prove Dr's Wrong?

Hello, I am wondering if you all can give me some advice. Like I have posted before, I am new to the pacemaker club. April 3rd is when I had my PM implanted after being diagnosed with Mobitz 2. I have never had any health problems before and the Dr's do not know why this happened. My boyfriend and his family (MAJOR health nuts) are determined to prove that the Dr's were wrong and that I should have had a second opinion while I was in the hospital. (Even though my Dr asked everyone he could in the hospital what an explanation could possibly be..) My boyfriend's chiropractor wants to talk to me and tell me I could have damaged a part of my spine that connects to my heart and that the Drs actually misdiagnosed me...
My question is, how likely is it that I was misdiagnosed? And I feel a little irritated they are going so far to "fix me" and get the pacemaker out of me (him and his family). He doesn't seem to care that it bothers me when he brings it up to other people for their opinions..
Am I crazy for being upset? I know he cares and is just trying to help but I feel like it is a bit too much?

Thanks for any advice.

15 Comments

6 months

by rolson - 2015-05-13 01:05:43

I have had mine for 6 months and am finally feeling mostly normal. I had no idea I had a problem. I thought it was just anxious feelings and stress about my old job. I was wrong and had to have a PM. You are the boss! Don't let anyone make you feel bad or different. If they are not supportive then they are not good for you and with a heart issue, of any kind, you need support. Give yourself time. I kept thinking I was back to normal but as time went on I felt better and didn't really know how far from "Normal" I had gone until about 2 weeks ago. Be gentle with yourself and insist others are gentle with you too. Learn the phrase "Time will tell" and say it often cause it will.

Get a new boyfriend / family !

by IAN MC - 2015-05-13 04:05:23

Hi Fun Size First of all; welcome to the PM club !

Fairly important questions are :-

- How are you feeling ?

- Did you have symptoms before and have they gone now ?

- I assume that you had a low heart rate before because of the Mobitz 2 . I hope that your pacemaker has resolved this ?

- Are your boyfriends' family "health nuts" or are they just " nuts "? How long have they studied cardiology ??

- Have you asked the family to explain to you the effects on your health of having the PM removed if the Drs just happen to be right with their diagnosis ?

As for chiropractors ; their opinions about most things are of zero value . Here in the UK all the evidence to justify their occupation was examined and the conclusion was that they may occasionally help patients with persistent lower back pain but otherwise, they practise witchcraft.

Chiropractors persist in propagating the nonsense that most illnesses are caused by mis-alignment of the spine . To suggest that your second degree heart block and symptoms and ECG traces are probably being caused by your spine is stupidity beyond belief !

Chiropractors should carry a health warning in my view !

Doctors don't implant pacemakers just for the hell of it ; they spend years and years in training and whilst mis-diagnosis of heart block is possible it is highly unlikely !

It is 99.99999 % certain that you need a pacemaker and that you were not mis-diagnosed ! Although the crazy people that surround you are "trying to help " they are doing just the opposite I.M.H.O.

Best of luck

Ian


Agree with Ian...

by 0300hours - 2015-05-13 06:05:36

...not about dumping the boyfriend, but about doctors almost certainly being right. It is unlikely that you'd have received a PM without clinical evidence of need, especially with the current climate of tight-fisted insurance companies who demand evidence before payment. There may have been concerned that you would progress to a complete heart block.

Looking back, had you experienced any periods of light-headedness or dizziness or other symptoms that you just brushed off or ignored? As far as reasons, who knows. You could search some reliable websites for more info to reassure yourself and others. Look for peer reviewed medical journal articles. Sometimes the abstract and conclusions are available without purchasing the article.

We have names for stars millions of miles away, but what goes on in the human body is sometimes a mystery. The wonder is that, with all the things that can go wrong, we generally keep on going for a long time. Relax and be grateful that they caught it before you got into big trouble.

If your boyfriend is right...

by Theknotguy - 2015-05-13 07:05:21

If your boyfriend is right you've gone through a lot of trouble for nothing.

If your boyfriend is wrong, you could be dead.

What does he want?

the only thing that needs fixed

by Tracey_E - 2015-05-13 08:05:46

is the boyfriend and his attitude. There is only one fix for a slow heart rate, and that's a pacemaker. Not telling you how to run your life, but can you picture having kids with a family like that?? It's one thing to offer helpful advice, it's another to go on about it and overrule your wishes and your privacy. Not cool.

You could probably classify me as a health nut and I have a chiropractor who is fantastic. I do feel that you can control a lot of your health by natural means- diet, exercise, alternative medicine- so I don't agree with Ian that they are all nonsense. If you look at the nerves in the body, they run through the spine so it makes sense that if part of the spine is pinching those nerves, they will affect your health. I went for back pain, was shocked at the changes that happened after. Within two months of seeing the chiropractor, I had huge improvement in allergies, migraines, years of chronic sinusitis was gone and my hormones were normal. I haven't had a prescription for any of those in over 10 years. However!!! This has nothing to do with my heart. Electrical cardiac problems are totally different. I definitely need my pacemaker as much now as I did the first time I walked into the chiropractors office.

Electrical problems often just happen at random. Did you ever have a newer tv that suddenly died but the 20 year old one in the next room is still going strong? Sometimes they are brought on by medication, infection, surgery, genetic predisposition, but most of us have no idea why it happened to us. Plumbing problems can be prevented by eating right and exercising. Electrical problems are often a fluke.

It's your health, your body. If you want their opinion, you'll ask for it. They need to back off and you have a right to be upset if they don't.

Response...thank you guys

by LittlestEaton - 2015-05-13 11:05:11

IAN: Fairly important questions are :-

- How are you feeling ? I feel fine for the most part. Incision area is still sore and sometimes my heart beats are uncomfortable but I have read that is to be expected. Sleep on the other hand, completely different. My body just won't do it like before.

- Did you have symptoms before and have they gone now ? Not any symptoms that I can recall, other than only a handful of times I felt vertigo. Very dizzy.

- I assume that you had a low heart rate before because of the Mobitz 2 . I hope that your pacemaker has resolved this ? I hope so, but I can't tell because I didn't feel different before... this entire experience is new to me.

- Are your boyfriends' family "health nuts" or are they just " nuts "? How long have they studied cardiology ?? They are health coaches, and while I agree with most of the things they say about the body and staying healthy, this one topic they want to talk about - and constantly say the Drs were wrong, makes me a little irritated.
No history of cardiology education- if I wanted to start a fight, I could use that. haha. But I do not.

- Have you asked the family to explain to you the effects on your health of having the PM removed if the Drs just happen to be right with their diagnosis ?No, but I like where you are going with this point.. :) I wonder what they would say.
I use to go to the chiropractor to get adjusted and help my with my headaches. It worked fine, but I just feel like suggesting that my spine is the cause of this is a little whacky.

My relationship with him and his family is wonderful. It's a very healthy and great relationship...but this one topic and their actions is a real issue to me. I have voiced my opinion on the matter, but I feel maybe the only way to really get this to stop is for me to be a little blunt and rude about it. And maybe I am scared what his reaction will be, maybe even scared that with the PM he thinks I am different.

0300-thank you for the advice on the medical journals, that is a wonderful idea. It is not that I want there to be something wrong with me, but if there is a slight chance that they were wrong and a chiropractor is right....geeze what the hell are we going to the hospital for, you know? I hope this is not the case.. lol

TraceyE- That is exactly what my Dr said, about the electrical problems being random. Although this answer was not good enough for the family. I am not a very difficult person, but some just need to know exactly what is going on, how and why it has happened.
I am glad I am not "crazy" in feeling upset about this.

AngrySparrow- Honestly, I would feel so much better if I felt a difference with the P... but even before I had no idea something was wrong with my heart. That is the only problem I have with this. Although, obviously me passing out due to my heart stopping IS a problem, I just never noticed the issue before then, and that is their main reason for thinking the Drs were wrong. It's like it's impossible for this to be random and come from nowhere. I am not a Dr, and most of the things they told me in the hospital I had forgotten because I had a head injury due to the passing out. This gives me no advantage when speaking to the family because I don't know what the Dr told me and I won't know more until my Cardiologist appt. So until then, I am just rolling my eyes waiting for them to shutup about it.
I am sorry about your Mother-in-law...honestly that sounds like my grandmother. -_-
His mother isn't like that, but very vocal about her opnions.
Thank you everyone for your advice. :)

Mobitz II

by WillieG - 2015-05-13 12:05:13

Dear Fun, Like you, I was diagnosed with Mobitz II last June and woke up after an EP study rather surprised that I had a PM! I was totally healthy and the only symptoms I had were a strong, uncomfortable heart beat when biking up steep hills. I had trouble with getting the settings correct as I felt no different after the PM and still had the blocks, now documented my the monitor I used ( can see rate cut in half from 150 to 75 for about 30 secs). I never felt dizzy and continued to bike during these episodes. Had settings changed at a different location as I was pacing 69% ventricular for something that only happened once a month for 30 seconds. After that change I had zero pacing for 7 months. I actually considered having the PM removed as I could not understand this "unpredictable Mobitz II" advancing when I felt great! Also, most PM people have bradycardia and I have an average HR of 92, with it often being over 100 just walking around the house. My EP said tachycardia and heart block don't go together which made me even more skeptical about needing a PM that was doing nothing for months. Then boom, last week of March, the blocks returned and each week at a lower HR. It was uncomfortable to even take a walk around the neighborhood and was impossible to play racquetball or bike. They scheduled me for a treadmill test with the pacer rep and changed my settings and I became active again! The EP told me to compare my heart to frayed wiring. Hard to fathom when you aren't experiencing any symptoms. But very easy to understand when the condition advanced. It is something that doesn't always have a cause nor do they know when and how it will advance. So hang tight and your life will improve!

I had trouble sleeping on my right side for 2 weeks and left side for 3 weeks as it felt like a dull knife was digging in my chest. This improved with pillows and now I rarely feel it. As Don R says, "you can't buy a tincture of time" at a pharmacy so try to be patient and times heals many issues. The mental were the hardest for me as I didn't feel I needed the PM.

Good luck!

Can't Help Chiming In

by Creaky - 2015-05-14 02:05:54

I am a health care professional and agree very much with Ian for too many reasons to discuss here. I do recognize that some chiropractors can be sometimes seem helpful when misalignment of the spine happens to be related to a problem.Moving on from that though-Your Doc is almost certainly correct. Mobitz can develop very randomly. My example- I am a very active (now 78 y.o.) hiker and skier who had no health issues at all. I am also a "health nut" as regards diet and exercise. For no apparent reason 5 years ago I started having syncope (passing out). Fortunately these all occurred at home and not when I was hanging off a cliff or driving 70 mph. As has been mentioned, these electrical problems can begin at any age and with no prior warning. In fact, even though my pacemaker now assures me my heart won't stop beating, my % dependence on it keeps increasing.
Don't be intimidated by the inlaws. I have no doubt you needed the PM.
Re the inlaws, there have been many valid opinions already stated in this thread. here's one more- how much will they interfere with how you bring up any kids you may have? These issues do only tend to get worse with time and are better addressed early on.
Creaky

Thank You

by LittlestEaton - 2015-05-14 11:05:05

Thank you all for your advice. Everyday I hear him make these comments about how I don't need the PM. It bothers me so much because while I agree it would be wonderful not to need this, there is no way he could possibly know what I need in my heart or not. I have learned so much with these messages alone, and It makes me feel better knowing others have been diagnosed with no previous health issues. (not that I am happy people have health issues, but that I am not alone)
I am anxious for my first Cardiologist appointment, and he is only anxious for me to speak to his Chiro...I don't get it? How do you compare someone who spent years upon years learning about the heart and it's functions to someone who specializes in back and neck pain. (Not that I don't like chiros..they have helped me, but I just can't compare in this situation)
I just feel more frustrated anytime he opens his mouth about it, and it makes me wonder how we will be if any other health issues arise.

Actually..

by LittlestEaton - 2015-05-14 11:05:18

Can you guys give me some insight on what my first appointment will be like? What will I be able to learn?

appointment

by Tracey_E - 2015-05-15 08:05:53

The follow up appointments are usually quick and easy. They will probably interrogate the pm, which they probably already did while you were still in the hospital, no big deal. They'll look at the incision. Sometimes they'll do a quick ekg. Make sure to write down your questions because it's so easy to get amnesia when we get there. You can also ask for a copy of the pm interrogation report. It will tell you a lot about how you are using the pm, things like percentage pacing and estimated battery life.

You are smart to think ahead and consider how he will handle future health issues. And then there's raising kids. It's so important to start off on the same page and with mutual respect for each others opinions.

"MYOB"

by knb123 - 2015-05-16 06:05:04

Hi FunSize! When Ann Landers was alive and writing her nationally syndicated advice column, she would often tell a letter writer: "MYOB." In other words, "Mind your own business." That is what your boyfriend and his parents should be doing. Being health coaches hardly qualifies them to weigh-in on your health status. If they have graduated from medical school, completed residencies and fellowships and seen hundreds of patients, maybe then they would be qualified to do so...but even then, all it would be is their OPINION. Meanwhile, they should shut the **** up.

I don't know you (or them), so admittedly I am not qualified to express MY opinion when it comes to your personal life...but their behavior would constitute a major red flag to me. Do you really need that kind of intervention in your life? I think not.

Stick to your guns...continue to ask questions...and make your own informed decisions.

You can do this.

One more thing...

by knb123 - 2015-05-16 07:05:58

I wasn't sure what Mobitz II was, so after responding to you, I googled it. I see that you and I have similar conditions...only mine is considered "level 3," or complete heart block.

To doctors I am a "model" patient in that I take care of myself, don't ignore symptoms, and follow advice to the letter. My PCP and I had been tracking my blood pressure for some time (because I have a family history of hypertension); we'd hoped to control it through diet and exercise. But when my BP spiked one day and my pulse rate was 37, she immediately knew I had developed an electrical problem with my heart. The doctors at my teaching hospital were basically scratching their heads because I didn't fit the profile of a patient with a complete heart block: I exercised regularly, took no meds, didn't smoke, etc. They concluded that mine was a random case.

The more I read about heart block, the more I learn that it can happen randomly. Again, I don't mean to give you unsolicited advice but your boyfriend and his parents need to zip it and respect your right to make decisions about your own body.

Thank you for your support! :)

by LittlestEaton - 2015-05-17 03:05:51

TraceyE thank you for the input on what to expect. That really makes me feel a little better that I will be able to understand more about what my PM is doing. And, I have already started with the question list. I have come to realize I have a horrible memory after the head trauma...so I have to write everything down.

knb- Not unsolicited advice at all. I asked the questions and I am happy with everyones responses. I very much appreciate you all taking the time to reply to my post. I am surprised to hear that a random case such as yours can lead to "complete" heart block. Although, many were surprised mine was random as well. The body does strange things, that's for sure.
I still do as much research as I can but I have come to notice I am reading a lot of the same things now, not learning much of anything new anymore.

I guess I will just have to see what happens next.

One more thing..

by Creaky - 2015-05-17 09:05:48

Hindsight- My very first episode of dizziness occurred when starting down from a mountain summit after a 5 mile climb.
I recall seeing a study that showed a higher incidence of arrythmias occurring in athletes participating in endurance activities such as distance running, hiking, etc

Creaky.

You know you're wired when...

You always have something close to your heart.

Member Quotes

My pacemaker has ultimately saved mine and my unborn child’s life for which I am thankful.