Left Ventricle Lead turned off-Qyestion

[tstrickland]

At 51 years old, I have viral DCM, Severe Left Ventricular Dysfunction, LBBB, Moderate Mitral Regurg., ascending aortic aneurysm of 4.2, and an EF of 20% at time of pacemaker/Defibrillator insertion in Feb. 2007 that took 5 hours due to difficult placement of leads & rehospitalization 2 days later due to "viral" infection. I am on all optimal meds have quit smoking and done everything they told me to do; watch sodium, etc. and am Not overweight, but still having symptoms.
EF went up to 39% after pacemaker. Recently,Due to overstimulation of phrenic nerve they turned off lead to Left ventricle. Now EF down to 31% and continuing symptoms of heart failure. My vital signs are all normal. My cardiologist/EP will not consider going back in to adjust/move pacemaker or leads.  My question is where do I go from here? What can be done now? Is the Pacemaker/Defibrillator doing me any good now with the Left Ventricular Lead turned off? Should I seek out another opinion from one who specializes in my condition, if so please help?
Thanks for your honesty.

[CCF-M.D.-PPB]

The very important questions is whether the Bi-Ventricular pacemaker helped you with your symptoms.  The improvement in the ejection fraction is not so important.  If there was significant improvement in your symptoms with the Bi-V pacemaker, then it might be worth going back to have the lead repositioned.  If there was no improvement in sympomts, just ejection fraction, then there really is no reason to do anything especially, that the last procedure was difficult and there is always some risk to it.  This is not a simple decision, however, and a more thorough evaluation might be necessary to offer you the best set of options.  The other important question is:  now that the LV lead is turned off, does the RV lead do any pacing?  Continuous RV pacing is not preferred in HF.  Your device should be set to back-up pacing unless there is significant conduction disease.  I am sure your electrophysiologist has that programmed so.  As far as the defibillator is concerned, think of it as an airbag.  It is only needed during an emergency, such as when the heart starts beating really fast, too fast to maintain adequate blood pressure.  The Defibrillator, therefore, is very necessary in your condition.  Your condition is quite complex and as I said earlier may require a second thorough opinion to give you better answers.

[Momto3]

Great question!

My dad is dealing with the same issue.  The doctor had difficulty getting the last lead in a place where it would not agitate the phrenic nerve.  The lead has been adjusted (via external machines) a couple of times, but my dad can still feel the abdominal twitches. The doctor can turn down the stimulation, or if it becomes too bothersome, he can turn it off.  So far, he has been hanging in there trying to deal with the odd sensations.  The ICD was inserted in November 2006.  

My dad had a regular pacemaker, but because of new studies and the possiblity of SCD (because of his history and low EF), the doctor replaced the old unit with a new pacer and ICD. He should find out in a couple of months if the new equipment is having any positive effect on the EF.

I hope your doctor is able to adjust the lead so that the sensations may be more tolerable.  Best of luck!

[tstrickland]

Thanks for letting me know there are others.

The EP doctor has changed the settings 3 times already BEFORE they turned off the lead during their Pacemaker interrogation procedures.  

I really don't know what my next step needs to be. Any answers or suggestions from the experts or others would be appreciated.

My question is where do I go from here? What can be done now? Is the Pacemaker/Defibrillator doing me any good now with the Left Ventricular Lead turned off? Should I seek out another opinion from one who specializes in my condition, if so please help?


Thanks

[Alisa W]

I am glad to see your question posted! My mother-in-law is having the same problem.  They turned her lead off about a year ago now.  They went back in and tried to use a different placement but nothing worked. She is concerned about "overworking" one part of her heart now that she is on one lead.

[pizzazz]

A related discussion, leaving icd off accidentally after cardiac ablation was started.