Collateral Damage: A Patient, a New Procedure and the Learning Curve

This post from an atrial fibrillation support group:

“I had an ablation at Johns Hopkins this past week and am very upset at the outcome. I haven’t had any [afib] symptoms but experienced severe shortness of breath.  After xrays and tests it was discovered that the phrenic nerve was damaged and I now have parylasis of the right diaphragm. I have a continuous dry cough and such SOB I can’t lay down to sleep. I can’t even sniffle.

“I’m told if it doesn’t resolve in 24-48 hrs [which it didn’t] that it may take 3 months to a year to recover and that is not guaranteed.. I’m very dissappointed and confused. I’m also on amiodarone and worry about lung involvement with a weakened respiratory system. I was released after 4 days and an appointment for 3 months from now. I don’t know where to start to figure out what I need to do now to make this better.”

That’s what happens when you get clipped at a teaching hospital—the bum’s rush. This was supposed to be a safe and minimally invasive outpatient sort of procedure, and here you are at home after an unexpected 4 day stay at the hospital; wounded, scared and confused, with more questions than answers and hardly able to breath.

The person who caused this situation is Dr. Hugh Grosvenor Calkins, who is,  according to the victim of this story,  the best doctor at the best facility in the land. That is what they would have you believe, and that is what most of us do believe. People want to believe it, and once you’ve put your life into the doc’s hands, you have got to believe it.

As for the complication, Dr. Calkins has reassured you that he himself did the procedure and that it was a very rare thing that happened in your case, so rare that he didn’t think it worth mentioning. And actually, when you think about it, it’s sort of your fault because your anatomy is different than everyone else’s. Your atrium is smaller than a normal person’s, or the walls of your heart are thinner.

“I was informed of many side effects but not that one. When I asked why I wasn’t informed I was told it is rare.

“Also talking to the radiologist and Drs. and looking at the ct scans and TEE results I have an abnormal heart anatomy. Things are not where they are supposed to be. 

It makes you feel bad somehow, that America’s Best Hospital has deemed that you have odd body organs.

Maybe Hugh Calkins is behind in his journal reading, otherwise he would have seen that phrenic nerve injury is “a well-described complication of AF,” and he would have read about “currently available tools to avoid the complication.”

Or maybe a doctor who was training for his fellowship in electrophysiology did the job. After all, that’s what they do at a teaching hospital, and the head of the EP lab at Johns Hopkins is on record as saying that for ablation procedures at Hopkins, “the attending shows up to be there during the burn.”

What did you expect?

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editing:

“I have so many questions, I do not know if you can help me or not. I was in WHC for 4 weeks. My right diaphragm is paralyzed from an afib ablation. I have been on oxygen since the procedure. I have not worked in 5 months (I have exhausted all my leave, borrowed some from friends and soon I will be back on leave without pay for the rest of my absence ~ however long that is)

I have to see a lot of doctors and take a lot of medicine and the bills just keep coming. ” http://www.dailystrength.org/home/messages/inbox/24345001/std

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Hello – Does anyone have pulmonary vein stenosis from ablation procedures? If so, did you have any symptoms and what did your doctor say about the outcome. On my last (3rd ablation) they found one vein narrowed about 50%. He explained this is a result from previous ablations and if it got any worse then I could get a stent. Any information is appreciated.
Posted on 05/16/13, 02:41 pm

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I read excerpts from your book online the night before my second ablation on 4/19/2011. The first question for the staff on my arrival was who exactly was going to be performing the procedure. I expressed my desire for only my EP to be the one and not students to work on me. I intend to buy a copy of the book for myself so I may read it in its entirety.

On 4/19/2011, I had my second ablation and woke from the procedure not feeling quite right. I had a sense of impending doom, my chest was very heavy, was having some shortness of breath and weakness. My blood pressure was slowly dropping and I could feel pain throughout my body. My mom and my husband were there with me. I kept telling them they need to talk to someone as something is not right, to get help, that something was very wrong. They tried to calm me the best they could and told me I should try to rest while they alerted the nursing staff. I advised them that I was afraid to close my eyes for fear I may die. The last time I looked at my blood pressure reading, it read 50/23. At that time, I was pretty sure I was dying. After some time, a nurse came in and asked me if I was short of breath and they put me on oxygen with non rebreather mask and a stat echocardiogram was ordered. I had a moderate sized pericardial effusion circumferential to the entire heart which had already collapsed my right ventricle and became cardiac tamponade. My heart could barely move to pump blood to my body. I was immediately taken back to the procedure room for a stat pericardiocentsis. Cardiac tamponade is universally fatal if not treated with pericardiocentsis to relieve the pressure. The tamponade was caused by a perforation of my atria during the ablation/burning process from what I told.

I was very lucky. The injury to my heart was not permanent and the perforation sealed up on its own and my life was saved. I was very fortunate that it was a fast bleed or I may have actually been home from the hospital when the effusion became so big that it tamponaded my heart and my husband would have had to call 911 if I managed to survive the ride to the ER. What happened to your wife is devastating and I am so sorry you both had to go through that.

I take ablation decision making very seriously. I believe that a person has to truly weigh the benefits vs the risks. I learned the risks are very real possibilities. The risk of complication is published to be very low, unless you are one of those unfortunate small numbers. I was one of the small numbers and will never look at the procedure as a “simple procedure” the same again. While I was waiting for help to arrive in the recovery area, so many thoughts were going through my mind…my daughter was set to graduate high school June of that year, my son was getting married in July and I laid there and wondered if I was going to die and devastate those loved ones around me that had so much happiness and future ahead of them…

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My first ablation was necessary because my heart was in atrial flutter and would not convert with iv meds and was out for over 4 days. Then 8 months later, afib out of the blue so second ablation at a local hospital – I really did not think it was a big deal. This one was a disaster – did not work and I still had to pay. 3rd ablation at Duke, I think this one worked but doc had to touch up previous ablations and informed me I had pv stenosis from my second ablation. I failed all meds except for the very toxic which we not recommended to me because I am 52. I do wish I had done more homework and research prior to having my second ablation. When you are in the throws of bad afib episodes, ablation seems like the obvious choice however it is not a decision to take lightly and I wanted to make that point.

http://www.dailystrength.org/c/Atrial_Fibrillation_AFib/forum/16454534-catheter-ablation-afib-safe

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I’ve had 4 failed ablations, currently on Dronadarone. A pacemaker has been suggested but I’m worried about it being non-reversible… http://www.health-friends.org/discussion/132

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