Cardiac ablation scheduled for November 8

[Sushi]

Well, let’s see if this has any effect on my Dysautonomia! I’m having it because of Afib, but the EP (one of the best in the US) will be ablating the autonomic ganglia in the heart during the procedure. I am curious, hopeful and yes, I bit nervous as I prepare to fly out of town for this procedure. The EP is well aware that I have Dysautonomia and EDS.

[MikeO]

@SushiI do wish you the best!!!! I am pulling for you....I get the nervousness have been there before. Keep your eye on the end result and take a deep breath when the anxiety kicks in.

Best...

Mike 

[MomtoGiuliana]

Will be thinking of you.  Glad you are getting the best care possible for this!

[Pistol]

I hope all goes well and that you will be a new and improved version of yourself after! Hugs!

[Jyoti]

Best wishes with this, @Sushi   I hope it makes a big difference in your life and we will all be curious to know how it goes.

[Sushi]

Thanks everyone! I’ll keep you posted.

[Sushi]

Update after 5 weeks: I have pretty much returned to my pre-ablation level of energy. It was a huge energy event with travel, missing sleep, general anesthesia and intubation and a host of potent drugs. Aside from hoping to treat arrhythmias (Afib and flutter), I was very interested to see how cardiac ablation might affect my Dysautonomia as they ablated the autonomic ganglia in the heart. My interim report is: no arrhythmias so far (I was having them daily) AND, I am able to stand up for about 3 times as long before my BP starts to drop—I have not had to suddenly sit down since the ablation.

This is very interesting and while a couple of EPs are doing ablations specifically for Dysautonomia, I’m not sure whether they have been able to arrange insurance coverage. But, for anyone who is considering an ablation for arrhythmias, this is good information to keep in mind and ask about.

[MikeO]

56 minutes ago, Sushi said:

My interim report is: no arrhythmias so far (I was having them daily) AND, I am able to stand up for about 3 times as long before my BP starts to drop—I have not had to suddenly sit down since the ablation.

@SushiI am so happy to read you have made progress! I hope your progress continues. I so worry about you.

[MomtoGiuliana]

Thank you for sharing.  Glad you are doing better since the procedure.

[Jyoti]

@Sushi--this is really hopeful news!  I am very happy for you and hope that the improvements hold.  Wouldn't that be cool?

[Sushi]

2 hours ago, Jyoti said:

@Sushi--this is really hopeful news!  I am very happy for you and hope that the improvements hold.  Wouldn't that be cool?

Yes, very cool and also might possibility point to new ways to treat some forms of Dysautonomia.

[Jyoti]

11 hours ago, Sushi said:

might possibility point to new ways to treat some forms of Dysautonomia.

Which is totally exciting!  

[Sushi]

Update after 7 months: I passed a milestone yesterday! Big box stores have always been my nemesis—just couldn’t walk from one end to the other without needing to sit down due to OI. I am working on a landscaping project in my yard and went to Home Depot with the contractor yesterday, with an attitude of “Let’s give it a try!” To my surprise I was able to walk the store and even stand around for about 45 minutes with no problem. Also, I haven’t had to stop meal prep and sit down in ages. So far so good! I wish this treatment option were more widely available. They are talking about clinical trials though.

[Jyoti]

That's fantastic @Sushi.  So very happy to hear it.  For you and also as a point of data and inspiration for others.  Thanks for the update.

[Fernfairy]

@SushiI am so happy to have found this board and you. Your successes give me hope! I wish you well. 

[Pistol]

@Sushi - wonderful! Congratulations! What a feat! I would pee my pants having to even enter a home depot without a wheel chair or walker, and would not dream about standing ANYWHERE for 45 minutes! I am so happy for your improvement, you deserve it!

[Sushi]

4 hours ago, Pistol said:

I would pee my pants having to even enter a home depot without a wheel chair or walker, and would not dream about standing ANYWHERE for 45 minutes!

Yes, it is awesome. My hope is that the research on this becomes more widely known among the specialists who treat dysautonomia. I don't think that many know about it now. It has been a topic for the last two years at the annual Heart Rhythm Society conference each May and was apparently one of the hot topics this year. The Heart Rhythm Society is the professional organization for electrophysiologists but dysautonomia doctors in other specialties may not be aware of it, and many electrophysiologists don't keep up with research. So it might be interesting to mention it to your doctors as a topic to watch. 

[Sarah Tee]

That’s so great, @Sushi. I really miss being able to cook for myself like I used to. I live in a small country town and have to follow some dietary limitations because of bowel surgery, so takeaways and prepared meals that I can eat are hard to come by. Didn’t matter back when I was healthier, because we get nice produce and I could whip up a meal.

So it’s winderful to hear you are able to cook without taking lots of breaks.

If your EP is open to the idea, you could write to Dysautonomia International and suggest him to talk about ablation on a webinar. Ditto maybe DINET could host him? There have been quite a few distinguished speakers so far, so your EP would be in good company.

 

 

[Sushi]

7 hours ago, Sarah Tee said:

So it’s winderful to hear you are able to cook without taking lots of breaks.

It is huge! I am not even thinking about strategies for meal prep now—I just do it. I do wear compression knee socks and after a hot bath I have limited standing ability but it is so much better. There isn’t yet data on whether this boon will wear off but I am hopeful. My EP is a world leader in ablation for arrhythmias and that is his focus, so I am not sure he would be able to open up his time and energy to Dysautonomia patients, though he is very aware of the problem—particularly since so many post-Covid patients develop POTS and he is seeing this in his patient population. I have a followup with him in about a month and will tell him how much this ablation has helped my OI. When I talked him about it beforehand, he was dubious that it would make much difference as I have a pacemaker which prevents the vasovagal syncope that is usually goes together with bradycardia, so my improvement may cause him to rethink.

If he did get involved it would have an impact as he is one of a handful of elite level ablationists and has a significant voice in the EP community. But, he is already overcommitted and his expertise is in the clinical and research aspects of ablation for patients with really complex arrhythmias who have failed earlier treatments. 

[Sarah Tee]

@Sushi, I really hope it doesn’t wear off.

I can understand your EP would not want to be overwhelmed with dysautonomia patients. Forgive me for being so overenthusiastic. I get carried away sometimes.

There is so much unmet need in all medical areas, not just dysautonomia. I imagine many many people with heart disorders are waiting for ablations.

[Sushi]

15 minutes ago, Sarah Tee said:

I can understand your EP would not want to be overwhelmed with dysautonomia patients. Forgive me for being so overenthusiastic. I get carried away sometimes.

There is so much unmet need in all medical areas, not just dysautonomia. I imagine many many people with heart disorders are waiting for ablations

It is a good idea, and I’d like to support it too, it is just that in some fields doctors have become micro-specialized to meet a certain critical need. My EP only does research and practice with arrhythmias and does not see patients for medical management of them—only procedures in the EP lab. He is an Interventional Electrophysiologist and his waiting list is long as people come to him from all over the world for ablations—I waited six months. He is totally dedicated and caring, though due to need, he only sees patients who can be helped with procedures like ablation or implantation of a Watchman. He heads an arrhythmia institute with about 15 EPs, 6 EP labs and 24 patient beds. Excellent, excellent care but limited to certain conditions.

He readily adapts to research and clinical experience though and was well aware that my history of Dysautonomia and mitral valve prolapse and regurgitation made my treatment more complicated. I went to him because he did have experience treating patients with this history and I knew that it was an important consideration for an ablation. So I am sure that he will be very interested in my improvement in OI, though I doubt that he could expand his practice to include Dysautonomia patients who don’t have conditions like Afib.

[Sarah Tee]

@Sushi, that is so interesting. I am glad you got to see someone so knowledgeable and skilled. And it’s always a bit of a thrill to meet someone who is at the top of their profession.

[Sushi]

3 minutes ago, Sarah Tee said:

@Sushi, that is so interesting. I am glad you got to see someone so knowledgeable and skilled. And it’s always a bit of a thrill to meet someone who is at the top of their profession.

It is interesting how the medical model is changing. With this doctor, you don’t go for a diagnosis—you already have it and either your cardiologist or you yourself have done the research to discover that he is at the top of the field. I did my own research (through a patient forum) and self-referred. Probably the majority of his patients have had failed treatment in the past so are seeking a doctor with proven expertise. I find it sad that many patients are in systems where they can’t choose their doctor because, for those of us with Dysautonomia, we really need our medical care to factor in all the wild cards that Dysautonomia brings.