Went to Dr. Pinski

It has been some time since I have posted on this board. As some of you who know me may remember, in 2005, I underwent 2 ablations, failed cardioversion, 4 failed antiarrythmics (Flec, Rythmol, Tikosyn, Sotolol), and finally Pacemaker Implantation followed by AV Node ablation in August 2005. I had actually seen Dr. Pinski in July of 2005 when AV Node ablation and pacemaker were in discussion and he wanted to put me on Tikosyn and buy me time until a new catheter that Cleveland Clinic was in the final FDA stages of trial was approved, about 3-4 months down the road. Tikosyn failed and after having a near syncopal episode, and desperate to get my life and health back, I chose AV Node ablation/pacemaker implantation, and went back to my old EP. Dr. Pinski warned me that I would be sorry, and I admitted to him in my email that in some ways that I was sorry; in other ways, the effects of the afib on my health, finances, career and personal life had been devastating for everyone around me and I could not wait 3 or 4 months facing total dysfunction during that time.

I have had my ups and downs with many pacemaker adjusts to get me to the place of being able to be athletic and active once again, but for the most part I was doing better. In June 2006 I went off coumadin and was put on Baby Aspirin 81mg, when PM checks showed that my AFib load had dramatically decreased.

In March of 2007, after being off antiarrythmics except a hefty 720mg of Verapamil to suppress many PACs, my AFib increased and I restarted Rythmol, increasing the dose to 300mg TID before feeling better.

Unfortunately, I am one person who feels each and every arrythmia, AV Node ablation or not, and I felt poorly during my AF/AFL episodes. Things calmed down until November of 2007, when my episodes began breaking through once again.

During my December 20th PM interrogation, it showed that I had been in 24/7 afib/flutter since December 15th. I started back on Coumadin after being off of it for 16 months, and began to discuss with my cardiologist what the next steps will be. Options discussed: 1. Live with it if I could tolerate it; 2. Cardiversion and antiarrythmic; 3. 3rd ablative procedure

I have tried to live with the arrythmias to see if that would be an option for me and it is not. Cardioversion is not an option I am choosing because it did not work for me in the past. Antiarrythmics have not been successful, and that left me with contemplating a 3rd procedure.

My cardio wants me to go to Brigham and Womens to see Dr. William Stevenson, and that was certainly one option. But, I decided to contact Dr. Pinski once again by email. He responded immediately and remembered me well, stating that he believed that with the mapping techniques available to him, he could help me.

After a fiew days, I made the decision to transfer my EP care over to him, and emailed him stating that. He emailed me back stating that his coordinator would call me with an appointment. Within 3 days, I was in his office.

That was yesterday. My husband Jim and I went to CC-Weston, an hour away from our home in Delray Beach, FL. I had a PM interrogation scheduled at 1:30P followed by my appointment with Dr. Pinski at 2P. Well, 2P came and I was called back by his nurse, Janet. An EKG was done and still the Medtronic guy had not shown up. Janet requested that my PM be interrogated in the exam room, and during that procedure, Dr. Pinski walked in.

He greeted us and then began to look at the printouts of my PM interrogation and this is where the appointment got impressive. He said my EKG traces were not looking great, but that my Afib had quieted down, with the last episode recorded on Jan. 4th.

I told him that I had continued to be symptomatic after that, and also told hiim that I exercise daily for 60-90 minutes and that I was symptomatic during any exertion at all. It was like a lightbulb went off in his head, and he asked me to stand. Then he said, "Run in place for me". He turned off the rate responsive pacing to see what my natural atrial beat would do and it elevated itself nicely to a high of 138. He turned to me and said, "The pacemaker is not pacing your atria now, this is all you. Keep going." I continued to run until I experienced chest pressure, shortness of breath and dizziness. He said "Stop", and while I rested, across the screen marched PACs, PVCs, atrial tachycardia and he said, "I see what you are feeling. Please continue, do some more." I continued to do this mini-stress test, and sure enough, I went into atrial fibrillation right in front of him. He said, "This is very interesting, Your heart is very irritable, and you have many arrythmias when you exert yourself at all." In addition, my heart rate recovery was sluggish/suppressed and it took about 6-7 minutes to begin to come down below 100.

After this, we talked for a bit, and he said that he wanted to do a Treadmill Stress Test, not for the purpose of looking at ischemia as the issue, but to study further how my heart breaks into arrythmias during stress. This will give him an idea of where to go for the ablation. He said that he will map for the atrial fibrillation and flutter, but also for the PACs and PVCs as well. While he of course did not promise that he could make my heart perfect, he believes he can make me significantly better but removing my atrial arrythmias. He put me on a mild beta blocker (I have asthma) to see if that will help with the ectopics, and I will see him in one month. At that time, we will go ahead and schedule the ablation for a couple of weeks after that (he is booked up for the next 45 days), if I am willing.

My husband and I left feeling VERY impressed. No one has ever listened to my symptoms and tested it out in the way he did, and he has given us hope that several things can happen:
1) I can get relieve from the atrial fib/flutter/PACs
2) I can get off of Coumadin
3) I can lower my dose of Verapamil from 720mg/day to a more reasonable level or get off of it completely, using a stand alone BP med for my hypertension
4) He can get my heart running as optimally as possible with my pacemaker, and in the future will be able to manage all of my pacemaker needs well.

We made the right choice going back to him; he has such vast knowledge of the entire electrophysiolgical scope, from atrial arrythmics to ventricular arrythmias and the techniques used to treat them to the intricacies of the pacemaker and how to fine tune to for peak performance.

I see my cardiologist next week and I will tell him that I will stay in FL with Dr. Pinski for the procedure rather than travel to Boston.

All in all, it was an uplifting appointment. He treated me and my husband with respect and he spoke with me during the PM check technically about what was happening with my heart, as he could see that I have educated myself well through the years and know my condition, pacemaker and issues well. He did not in any way make me feel badly re: the AV Node ablation/PM or in any way say, "I told you so." It doesn't help me to look back either; I need to focus on the future working with what I have left.

I am hopeful once again.

Have a great day!!!

A superb story, both detailed and touching, it contains a portrait of a great clinician. All the best of luck to you!

Barbara,

Thanks for sharing this sequel with us. In 2005 I followed your story with great interest, feeling so disappointed when you opted for the AV node ablation. But as you said, no need to look back now. However, your post will provide invaluable information for those individuals who may be advised by a physician to go the same route.

I share your thoughts regarding Dr. Pinski. He is well qualified to help you with your heart and pacemaker problems. Please do keep us posted as to your progress.

Best wishes and many blessings,

Marian

Pinski is the best. I have been to a lot of different cardiologists and EP's and when you are with him you know YOU are THE most important person to him at that moment.

Barbara, you know you are in good hands with Dr. Pinski. Best of luck!

Marian,
I do believe that a pacemaker was needed, in my case. My heart rates were soaring above 250 and dropping to 30 or less; I couldn't have waited 3-4 months with symptoms like that, to see if a 3rd ablation would have been helpful. At the time, Dr. Pinksi said that he would have never put in a pacemaker and meds weren't working, so all I saw ahead was more hospitals, and life as a very ill person. I had already lost my job due to the past 6 hospitalizations, almost lost my life after a complication after a TEE, and the stress and toll this all was having on my family and me was incredible, from a physical, financial and emotional viewpoint.

My cardiologist at the time, who I trusted was really wanting me to have a PM and stated that it would not protect me from cardiomyopathy without the AV Node ablation. Finally, my EP stated that there was a 25% chance that a 3rd ablation would help me. With these odds, I made my decision. I did the best that I could, given what I had at the time. That is all that we humans can do.

I regret that I am pacemaker dependent, but sometimes the AV Node ablation IS the way to go. I don't want anyone considering this procedure to have the bias that if that is their choice after much research and consideration for their circumstance, that there is something wrong about that choice. Sometimes, I feel that there is a very negative bias here that is put out there that makes a person who is trying to make a decision feel unsupported unless they are wanting to keep having procedures until they find their "cure". I think that Maze and mini-maze procedures are choices that while they are available as an option, are radical choices for some. I will not seek these out; for me the risk for complications is not one that I am willing to live with. However, those considering such an operation are positively supported because the promise given is a cure. Why not support a person who has exhausted all that they can, given their financial, physical and familial needs to choose whatever treatment that they feel they can live with in the end, even if it means that their life will be altered as mine was.

I may never have my cure; I am willing to try once again, because my arrhythmias are negatively impacting me more now and the life that I want to have, for me and for my family. But I won't have procedure after procedure either and may have to accept that I will have to live with things, if this 3rd procedure is not successful. Dr. Pinski is a "think outside the box" kind of guy, so I trust that he will exhaust all resources in his attempt to help me, so I am hopeful.

On a positive side, the PM kept me out of the hospital all these years, kept my ventricles healthy, and allowed my cardiologist to have better control over treating my very severe symptoms. Quality of life is alway my consideration, and overall, my quality did improve. I was able to work and provide for my family, and pursue life rather than continue in the neverending revolving hospital door.

So, the bottom line is that all choices are available to utilize and each person needs to make it his/her responsibility to get educated and knowledgeable and with the knowledge they have at that moment in time, make the best decision possible for them, without regret, now or in the future.

I will live with my choices, and will move forward as I research the situation. I believe that Pinski offers a new technique, a new perspective and new knowledge base that was not available to me before. I look towards the future with cautious optimism for a better life ahead.

That is my perspective of my situation.

Barbara,

My my, such as exposition to defend your previous decision, which may or may not have been the best. I was not trying to be non-supportive.

You are now in very good hands with Dr. Pinski. Please do not turn my well meaning post into an argument.

Thanks.

Marian

Barbara--None of us walks in the other's shoes. You made your decision based on your life experience and medical advice at that time. Who knows? If you had not made your choice with such severe symptoms, you might not even be a candidate for ablation at this time. Best of luck with your procedure. May you attain and bask in NSR!

Louise

Marian,
Certainly, I was not attempting to pick a fight. I was reacting to the idea that others might read of my experience and see me as a poster child for why AV Node ablations are to be avoided at all costs. It just isn't as simple as that or as black and white. I want each person to be supported to get all the information that they need before making such a drastic decision and then once it is made, get feedback from others that helps them live with the decision in a positive way.

I do appreciate your supportive intentions and apologize if it seemed otherwise. I of course know that you are happy with your choice in working with Dr. Pinski, and are having much deserved success.

My statements also were not necessarily aimed at you personally, but at the idea that multiple ablations and surgeries are okay, as long as one is seeking that cure, but a different decision is a mistake. We are all doing the best that we can to figure out this path, and there is not certain or right way.

Yes, I am sensitive because I have received very little support through the years for my decision and hesitated to post onto the BB to avoid more responses that would make me feel more saddened than I already feel for the loss of my heart to beat on it's own.

I will continue to post my journey with Dr. Pinski, as a tool for others seeking their own answers.

Thanks again for your time in responding to my experience.

I think we all need to be aware also that it is often difficult to ascertain the "tone" of what someone is saying in an email, as we can only read what one is saying. We often assign our own impression of what was MEANT, which isn't always correct.

To me, I thought Barbara sounded like she was trying to explain her decision - although it certainly would be understandable to feel overly sensitive when you are dealing with a chronic condition. I think we can all relate to that!

Glad to hear that Dr. Pinski is so highly regarded - and it's not just Dr. Natale, who is rather far from New York (where I live). While I am not in the position to consider an ablation at this point (I haven't even tried any anti-arrythmics yet), I am "taking notes"

Good luck Barbara. Never give up hope

~ Barb H.

Barbara, What a story... My best goes out to you. You deserve a cure. Dr. Pinski sounds like a real caring doctor and someone looking out for your well being. Best of luck to you and I will certainly be following your progress. Again my best. Steve Daley

HI Barbara,

I remember you well, and all that you have been through. Our stories are quite similar and I am so glad you decided to go back to Dr. Pinski. He is a Gem of a Man and a Dr with great knowledge and integrity.

I have not seen him lately, mainly because of the 5 hour each way trip, but also because I am doing extemely well. AV Node Ablation, 2 pacers, aand my PVI Ablation behind me, absolutely no AFIB and feeling a lot younger than my 67 years, all thanks to him

I hope the ending to your story turns out like mine has to this point. I am still on Coumadin, and still taking Tikosyn, but my life is back, and I am doing so well, and doing much more than I have in years. Only problem is because of the great medical costs past and future, I just can't retire. Oh well, better to live and work, than not work and be gone.

God Bless. I pray that this will be your answer.

Bob G Ocala