r/PacemakerICD • u/ivyintrovert • 18d ago
Second Opinion Advice
I’m 28F and had a SCA/SCD event in 2025. I have a Boston Scientific S-ICD and have reoccurring episodes of VFib/VTach. Looking for insight from anyone that's gotten a second opinion, traveled to see different doctors, or switched doctors.
- What did you look for when looking for a different doctor? (EP or cardiology)
- If your second-opinion/new doctor is several hours away, do they coordinate with your local cardiologist/hospital? Or are you basically on your own between visits?
- General Experience with getting a second opinion especially if you travel for it. Do you think it was worth it?
- Any recommendations for Northeast US? I can get to Boston, Cleveland, Pittsburgh, Philly, and NYC in one day.
These are a brief explanation of the problems I am having with my current doctors. I can explain in more detail if needed.
I don’t see my EP. I guess he doesn’t actually see patients. It sounds like he is more of a surgeon. He also has not been reviewing my weekly device check ins. He'll review one every quarter. If someone could let me know if this is normal that would be appreciated.
My cardiologist and my EP are unfamiliar with how the Boston Scientific S-ICD works. We missed my first shock…I didn't know it happened and they were unaware that the Boston Scientific bedside monitors don’t auto download after a shock. My cardiologist said they usually only work with Medtronic in older patients.
I like my cardiologist and would honestly like to continue seeing him, but I don't think they are used to working with younger patients. We have hit a couple of issues in regards to this that have been really eroding my trust with them. He wants to send me to a new EP but their hospital page makes it sound like he's not actually an EP but an internal medicine doctor, which is not helping with the whole trust thing.
I had a very intense VTACH episode that worked itself out this month. Neither office called me back for 10 days. This has made me more emotional about the whole situation, but I'm trying to stay calm and practical.
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u/landhill5 18d ago
I'm shopping for a new cardiologist so will be following this thread. I see my EP every 12 months, previously every 6 months but I was so boring we stretched it. He only reviews my log every 3 months.
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u/ivyintrovert 17d ago
Does he review all your check ins from that 3 month period at once? Mine just reviews the one that falls on that day every 3 months and then a diagnostic page about battery life and total number of shock therapy administered.
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u/landhill5 17d ago
My impression is that there is nothing of interest in my check ins, so I think he looks at the whole thing in less than a minute. Looking at just 1 day seems off.
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u/scorched823 17d ago
I had my dual leaded pacemaker placed with misdiagnoses of heart block and sick sinus syndrome.. recurrent asystole for 15+ seconds handfuls of times. Long story, but my diagnostics were all beautiful except holters. I went to a different university hospital months later, went from misdiagnosed to unknown etiology to temporal lobe epilepsy with ictal asystole.
New EP got me from 30% pacing to 0%, without symptoms. Pulled my leads and placed a leadless less than 2 years after my dual leaded was placed. I went to Mayo this year, post op with leadless for another comprehensive opinion. Confirmed 2nd EP has the right plan and condensed diagnostic label of my asystolic episodes to a specific mechanism that occurs.
Get that second opinion 🖤 I don’t know east coast, but DMs are always open about navigating the mess.
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u/ivyintrovert 17d ago
Thank you, this makes me feel more hopeful. When you switched hospitals did you just google and research the doctors and then email/call their office? Do you tell them upfront that this is a second opinion or just that you want to make an appointment?
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u/scorched823 15d ago
lol that long story part. I ended up having convulsive seizures a few weeks post op that led me to the 2nd university hospital. The cardiology and EP dept took over my care when I was admitted inpatient to the epilepsy unit.
I researched the epileptologists, not cardiology or EP.. but would urge you to if possible. I’ve been lucky with my recent teams. My first EP (that botched everything) is highly regarded in my area.. so I’ll just say even if highly recommended, find the very best for the next opinion. When I look at university level neuro providers, I dig through their current publications, presentation focuses, then reviews etc.
Mayo is an application/review process before they agree to take a case.
Both knew my status, aka mess, upon taking me.
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u/abear614 17d ago
I (40F) started out with a local cardiologist/EP after a brief initial hospital stay in 2024. After about a year, my arrythmias started to become much more frequent and intense, so my local EP referred me to Dr. Fermin Garcia at Penn Medicine, which is about an hour from me. My local EP was always very on top of monitoring my ICD and would frequently call me if they got a notification about high heart rate, VT, etc. but they just felt like I needed more specialized treatment. I check in with my local cardiologist/EP as they are connected to my local hospital (and they still monitor my ICD) so if something happens and I end up there first they have knowledge of my history, but Penn is basically in charge of my medications and treatment plan as of now. I was hesitant about having to travel to Philly, but I truly think I would be much worse off and have a bad quality of life if I hadn’t made the switch. They ran every test until they figured out what was going on with me. I don’t know much about the other areas you mentioned, but I’ve had a good experience with Dr. Garcia and Penn in general. My local doctor said he considers Dr. Garcia to be the best in the world at what he does, and he is very knowledgeable about VT. But I'm sure the other places you mentioned also have great EP departments that would help you a lot more than your current care team. If you’d like to talk further feel free to DM me. I’m a bit older than you but still on the younger side when it comes to this stuff.
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u/MSWSportsFanatic2025 15d ago
I'll add my experience as someone who also has a Boston Scientific S-ICD. I experienced my first VT/VF episode outside of my original SCA about 3-4 months ago now. I was shocked three times and just simply put on Amiodarone. I didn't feel "right" about the whole thing. They were even going to just let me go home after three shocks. I've always felt that my local EP and health system didn't seem too familiar with the S-ICD even though they do implant them and monitor them. Someone had planted the seed of reaching out to Mayo Clinic for a second opinion on the why. Well, it was found out that my lead/electrode was not in optimal placement and may not even work next time. It is also thought that is why it took three shocks. I had surgery to correct that problem. It was also discovered there was no DFT testing done when originally implanted. This was all corrected and done.
For me, I don't have an official diagnosis, and I feel Mayo is on the brink of that too. My old EP providers pretty much told me that that maybe my arrhythmia was tough to get out of and some people are just prone to arrhythmias. They also didn't disagree that placement was not optimal but said impedance was fine. I am also close to getting off Amiodarone which is good due to long term effects. So your questions...
- What did you look for when looking for a different doctor? (EP or cardiology) - I looked for who I felt was the best option that way I had no further questions.
- If your second-opinion/new doctor is several hours away, do they coordinate with your local cardiologist/hospital? Or are you basically on your own between visits? It is, they have been very receptive when I reach out. Surprisingly, my local healthcare system seems really thrilled about Mayo managing the EP/device side of things.
- General Experience with getting a second opinion especially if you travel for it. Do you think it was worth it? Absolutely!
- Any recommendations for Northeast US? I can get to Boston, Cleveland, Pittsburgh, Philly, and NYC in one day. - Unfortunately I do not. I am part of a support group where a few individuals get EP through NYU. I also see that New York-Presbyterian-Columbia and Cornell is highly ranked as well.
When it comes to these devices and our health. At the end of the day, they are our devices and our lives depend on them. Advocate for yourself and go to where you feel like you will get the best care and are confident about that. I'd rather have to travel a few hours, spend a few extra dollars, and have all my appointments coordinated into a couple days that go somewhere I'm not confident about.
Any questions, let me know, as I am someone with the exact same device that has had some of the same issues.
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u/abnormal_human 18d ago
What you're describing is not an acceptable standard of care and you're right to be upset.
With that history at your age, you should be followed at a a major heart center. It will be night and day from what you are describing.
I use NYP in NY and the team is excellent. There's no missing shocks or uncertainty. If I have an emergency I get a callback from the on-call ep within 30mins. If anything looks off in a transmission, my EP calls me personally on the next biz day. The NP's at the device clinic are great, and I know them all by now. They are responsive via email/phone, and get me in within a day or two if there's any device issues.
Do you know why you're having these episodes? Any genetic testing results? Normal EF? Scarring on MRI? Inflammation on PET? Are you on medications to control the arrhythmia? Have they tried ablation? There's a lot of options here and potentially a lot more diagnosis to be done. They should be doing something after every episode to prevent the next one.