Help wanted (Score so far related)

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msnobody
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Re: Help wanted (Score so far related)

Post by msnobody »

Jersey Girl wrote:
Wed Dec 27, 2023 6:55 pm
msnobody wrote:
Wed Dec 27, 2023 11:44 am
Has anyone ever mentioned trying an ablation? Not so sure it is as effective on chronic a fib, though.
I'm not surprised you asked about ablation. Sounds good, right? Probably not for me. I'll explain.

When I first started researching ablation I noticed a pattern. Patients (more often than not) would have one ablation, then another, then another and sometimes a 4th. After the 3rd (or the rare 4th) the next step was a pacemaker. I attribute that to the heart's ability to remodel itself. So you have a few screwy sinus nodes and zap them. The heart remodels and you can get more newly grown screwy sinus nodes.

My problem isn't electrical which is the ONLY form of afib that docs here in the US are familiar with. It's vagally mediated. How can you tell mine is vagally mediated? It only happens after I've eaten so that involves the stomach/digestive system. All the ablations in the world aren't going to fix this for me. And ablation won't fix my stomach or the real culprit...my vagus nerve.

In fact, ablation could make things significantly worse for me by damage to the vagus nerve:

Effect of Atrial Fibrillation Ablation on Gastric Motility
https://www.ahajournals.org/doi/10.1161 ... 114.002508

That research paper is dated what, 2014? It makes a connection between the ablation, damage to vagus nerve, and damage to gastric functioning. But it still doesn't look like it's aware of the gastric/cardiac syndrome part. Probably because it wasn't aware of it.

If you look up what I have on pub med, last I looked there was ONE research paper (fairly current) on it.

If you look up what I have on the UK version of pub med, there are TONS of papers on it.

I sent that one paper to my cardio folks before an appointment so they could read and understand it from a medical standpoint and quite frankly, so they knew I wasn't accessing crackpots from the UK. He walked into the next appointment with it in his hand.

And he thanked me.

That's when he explained the different approaches to research opportunities between the US and the UK.
So, I take it as a no as not having been offered.
The LORD your God has chosen you to be a people for his treasured possession... The LORD set his love on you and chose you... The LORD has brought you out with a mighty hand and redeemed you from the house of slavery. Deut. 7
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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

msnobody wrote:
Thu Dec 28, 2023 2:13 am
Jersey Girl wrote:
Wed Dec 27, 2023 6:55 pm
I'm not surprised you asked about ablation. Sounds good, right? Probably not for me. I'll explain.

When I first started researching ablation I noticed a pattern. Patients (more often than not) would have one ablation, then another, then another and sometimes a 4th. After the 3rd (or the rare 4th) the next step was a pacemaker. I attribute that to the heart's ability to remodel itself. So you have a few screwy sinus nodes and zap them. The heart remodels and you can get more newly grown screwy sinus nodes.

My problem isn't electrical which is the ONLY form of afib that docs here in the US are familiar with. It's vagally mediated. How can you tell mine is vagally mediated? It only happens after I've eaten so that involves the stomach/digestive system. All the ablations in the world aren't going to fix this for me. And ablation won't fix my stomach or the real culprit...my vagus nerve.

In fact, ablation could make things significantly worse for me by damage to the vagus nerve:

Effect of Atrial Fibrillation Ablation on Gastric Motility
https://www.ahajournals.org/doi/10.1161 ... 114.002508

That research paper is dated what, 2014? It makes a connection between the ablation, damage to vagus nerve, and damage to gastric functioning. But it still doesn't look like it's aware of the gastric/cardiac syndrome part. Probably because it wasn't aware of it.

If you look up what I have on pub med, last I looked there was ONE research paper (fairly current) on it.

If you look up what I have on the UK version of pub med, there are TONS of papers on it.

I sent that one paper to my cardio folks before an appointment so they could read and understand it from a medical standpoint and quite frankly, so they knew I wasn't accessing crackpots from the UK. He walked into the next appointment with it in his hand.

And he thanked me.

That's when he explained the different approaches to research opportunities between the US and the UK.
So, I take it as a no as not having been offered.
That's a no. The closest I got was when my cardiologist wanted to raise the dosage of the beta blocker she initially put me on (after I showed her what an increase did to me) and she asked if I wanted to talk to an EP about ablation and I said, "yes". That's the UK educated EP who after hearing my history in about 5 minutes and seeing the same documentation that I showed the cardiologist...immediately took me off the beta blocker. He never said a word about ablation from that point on nor did his NP that I saw.

When I get to go in again to that office, I will be sure to ask about ablation and see what he says. He's hard to get an appointment with but I do want to follow up with him this coming year. His write up says he's also educated in cardiology. So he's like the best of both worlds I think, plus he knows about the type I have.
We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
msnobody
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Re: Help wanted (Score so far related)

Post by msnobody »

Are you taking a PPI?
The LORD your God has chosen you to be a people for his treasured possession... The LORD set his love on you and chose you... The LORD has brought you out with a mighty hand and redeemed you from the house of slavery. Deut. 7
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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

msnobody wrote:
Thu Dec 28, 2023 3:36 am
Are you taking a PPI?
No and I don't ever intend to. I reject them due to their ability to cause fairly rapid and significant bone loss.

I do take famotidine twice daily and sometimes the Walmart version of Tums.
We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
msnobody
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Re: Help wanted (Score so far related)

Post by msnobody »

So, mid-January you may have more information. Breathe, Jersey, breathe.
The LORD your God has chosen you to be a people for his treasured possession... The LORD set his love on you and chose you... The LORD has brought you out with a mighty hand and redeemed you from the house of slavery. Deut. 7
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High Spy
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Re: Help wanted (Score so far related)

Post by High Spy »

Jersey Girl wrote:
Thu Dec 28, 2023 3:46 am
msnobody wrote:
Thu Dec 28, 2023 3:36 am
Are you taking a PPI?
No and I don't ever intend to. I reject them due to their ability to cause fairly rapid and significant bone loss.

I do take famotidine twice daily and sometimes the Walmart version of Tums.
Image

https://www.amazon.com/gp/product/B00IO5F9WC

I find Acid Gone vastly superior to Tums and use then in combination with Pantoprazole, which goes by the brand name Protonix.

They say to compare with Gaviscon, but spy finds Gaviscon detestable, yet likes Acid Gone.

Thanks for sharing your story, may God be with you.

. . . * . . . . . . . . **
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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

msnobody wrote:
Thu Dec 28, 2023 4:11 am
So, mid-January you may have more information. Breathe, Jersey, breathe.
I'm doing pretty well on the waiting part. I got busy with practical hands-on tasks and it really helps! As always prayer! :D
We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

High Spy wrote:
Thu Dec 28, 2023 4:16 am
Jersey Girl wrote:
Thu Dec 28, 2023 3:46 am
No and I don't ever intend to. I reject them due to their ability to cause fairly rapid and significant bone loss.

I do take famotidine twice daily and sometimes the Walmart version of Tums.
Image

https://www.amazon.com/gp/product/B00IO5F9WC

I find Acid Gone vastly superior to Tums and use then in combination with Pantoprazole, which goes by the brand name Protonix.

They say to compare with Gaviscon, but spy finds Gaviscon detestable, yet likes Acid Gone.

Thanks for sharing your story, may God be with you.

. . . * . . . . . . . . **
Thank you so much, Spy. He is!
We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
msnobody
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Re: Help wanted (Score so far related)

Post by msnobody »

I went back and read from the opening post page. I didn’t realize that you posted much of the problem in the opening post, but it’s right there. I guess I had just forgotten. It is ashamed that you were wanting scoping procedures in August and it will come to fruition in January. Seems like a long wait time.
The LORD your God has chosen you to be a people for his treasured possession... The LORD set his love on you and chose you... The LORD has brought you out with a mighty hand and redeemed you from the house of slavery. Deut. 7
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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

msnobody wrote:
Thu Dec 28, 2023 12:24 pm
I went back and read from the opening post page. I didn’t realize that you posted much of the problem in the opening post, but it’s right there. I guess I had just forgotten. It is ashamed that you were wanting scoping procedures in August and it will come to fruition in January. Seems like a long wait time.
It's been about 5 months wait time. One good thing* about the long wait is that I've had ample time to knock myself out thinking over every single outcome scenario under the sun to finally reach the point of accepting that it's out of my hands. It's in His hands. And so am I. :)

Recap:

1. Full adult blood panel (normal)
2. CT scan (nothing of concern)

The scopes is mid-Jan.

*I always find the "one good thing". :)
We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
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