A Second Opinion

  Hi everyone, I had an appointment with a second EP yesterday. He was outstanding in terms of the time he took, questions he asked and how thoroughly he had reviewed my medical history in advance. He is my best friends close friend and he said my history was quite interesting, ha ha ha, I was  glad I could help.

  First, he ordered a PET scan to check for Cardiac Sarcadosis. For those who do not want to read my other posts I had pulmonary Sarcadosis in my 30's that "Spontaneously Resolved" only I have since learned that in 20% to 30% of patients it never completely goes away.

  He also ordered a stress test. He said my chances for Cardiac Sarcoidosis was 20% and underlying heart disease 5%, or so due to my exercise tolerance.

  Personality, I put my chances of Cardiac Sarcoidosis as higher because I had pulmonary Sarcoidosis in my 30's and since 2010, I have had electrical  problems first with a RBBB that resulted in 2 Cardiac MRI's that were negative and then my AV failure; which this doctor seemed certain was really an issue in the HIS bundle rather than the AV node if he had to guess. I hope I am wrong. 

  My first doctor wanted to do a 3rd Cardiac MRI 3 months after my implantation and his take on my 2010 & 2013 MRIs that were both negative was that "we need to get someone that can read this one."

  The second EP said given my history of Sarcoidosis his hospital probably would have put in a PM/Defibrillator rather than just a PM. He very tactfully explained that in alternate he might have done a Cardiac MRI before proceeding with the PM as well. 

 After my appointment, I couldn't help remembering how I sat for 12 hours waiting for my EP the day I was implanted while another Cardiologist dismissed my questions throughout that day as was the case the previous day. She thought she was quite bright; yet in my field, I explain possiblities very throughly, especially if the issues are significant and obvious and no one explained to me we can ether a.  proceed with a PM now, or b. test for Cardiac Sarcoidosis first and then proceed with whatever is optimal, so I think I may be smarter than she is. 

  During my hospital stay every doctor I saw (at least 6) wanted to discuss my Sarcoidosis history as soon as consultations began with each of them, so it's not like she was unaware of my past history.

  All that said, I really like my new Doctor and we also discussed my concerns about LV remodeling. He kept telling me how good my questions were and said that was an issue to discuss; yet not until Sarcoidosis and heart disease were ruled out. 

  I am taking my wife to Florida tomorrow for 10 days and I am going to find a lap pool to swim in every single day to get myself in shape again. Then I will return home for these various tests; which have already been scheduled as of this afternoon.

  That's my update! 👍
 

5 Comments

Excellent progress

by Gemita - 2020-01-23 05:37:13

Hi Johnny,

So pleased you have been referred for some essential tests to determine whether you have Sarcoidosis or other problems with the function of your heart. The PET scan sounds a good move, very sensitive, even superior to MRI for detecting systemic disease we were told.

You obviously impressed your EP with your knowledge on HIS bundle pacing and he seemed genuinely pleased that you had done your homework!  Most good doctors today are happy for us to take an active role in our treatment, although unfortunately there are still a few doctors around who might prefer us to leave it all to them!!   At least that has been my personal experience.

Yes until Sarcoidosis and any other heart problems are firmly ruled out it is premature to consider HIS bundle pacing.  I can remember some years ago sitting in the Cath Lab waiting for an electrophysiology study for my arrhythmias.  A doctor came hurriedly into the waiting area and told a patient beside me that his MRI was positive for Sarcoidosis and that his ablation for atrial fibrillation had been cancelled since it was unlikely to succeed.   MRI found that Sarcoidosis was the cause of his atrial fibrillation and the best treatment for Sarcoidosis would be medical (mainly steroids) not surgical. In the end he was relieved he hadnt gone through unnecessary surgery.  Let us hope your tests are completely negative though Johnny and you can continue to move forward.

Have an enjoyable time in Florida with your wife - sounds just what we all need.

LV remodelling, AFib and RV apical pacing

by crustyg - 2020-01-23 06:35:05

Just to add to your (justifiable) concerns, Johnny, I'm currently hitting the literature for research showing the impact of RV apical pacing (seems to produce LV remodelling, as measured by reduced LVEF %age when patients are followed up for 12months or more).

It's not clear in my mind whether this affects everyone (doesn't *seem* to be such an issue for the CHB patients, who start out with a healthy myocardium), but the evidence appears strong - still reading and thinking about the data.

Equally, there's good evidence that excessive RV pacing leads to AFib more often than RA pacing in those who have reasonable/effective AV-node conduction.

IMHO, any EP doc who dismisses concerns about LV remodelling caused by RV apical pacing is out of date.  And probably heading for litigation.

I wouldn't wish sarcoidosis on anyone.  Not fun.  One of my chums has it quite badly in his lungs and he's run into all the usual steriod-therapy complications - but at least he can breathe again.  And yes, cardiac MRI *before* PM is the best approach, but that's hindsight.

Glad to hear that you're adopting such a positive attitude - I salute you!

Crustyg

by Gemita - 2020-01-23 07:25:28

RV apical pacing seems to have been replaced by RV septal pacing for us newcomers, or is this more or less the same area ? Hopefully RV septal pacing is an improvement on apical pacing, although not as good as HIS bundle pacing.  Have you found out anything positive about RV septal pacing ?  I think Johnny has high right placement too.  I have high right septal pacing and so has my husband (according to our discharge papers).  Would be interested to know what you discover when you have time. Many thanks.  I will question our cardiologists/EPs too although a bit late now

RV Pacing sites

by AgentX86 - 2020-01-24 15:24:08

This an interesting discussion. A little web searching found the below article which has a good diagram of the different lead placement locations for RV pacing.

<http://www.innovationsincrm.com/cardiac-rhythm-management/articles-2018/may/1229-right-ventricular-septal-pacing>

Interesting Discussion

by Johnny63 - 2020-01-24 15:40:11

  This is an interesting and important discussion. Thank you all for your input. I will read that article when I have the chance, this knowledge will help me when I communicate with my Doctors.

  I would be interested in whatever your research indicates Crustyg...Have a great weekend everyone!  

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I'm 44, active and have had my device for two years. I love it as I can run again and enjoy working out without feeling like I'm an old man.