Dysautonomia, POTS or EDS and Nissen?

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Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 4/29/2014 11:59 AM (GMT -6)   
Just curious if anyone else here is also dealing with Dysautonomia, POTS, and/or EDS?

I'm curious about any particular insights about dealing with the symptoms and effects from these other issues along with the journey of fundoplication. Still waiting on my surgical consult, and I plan to discuss my other medical issues there, but it would be nice to have someone else to talk to.

Thanks!

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 4/29/2014 5:32 PM (GMT -6)   
Welcome to the forum, Brianela.

Your surgeon does indeed need to know about your complicated comorbidities. The EDS might be the big one, although dysautonomia is an umbrella term that covers a lot of problems.

I have some autonomic dysfunctions that cause me to get suddenly overheated and seriously high blood pressure. Mine was caused by a bunch of crushed vertebrae, 2 in my neck. What sort you have will determine if they will have to give you special treatment.

Ehlers-Danlos is important if you have periodontitis or mitral valve prolapse because they will have to give you antibiotics. They will also want some heart tests. I'd had a heart attack, so had to have a stress test even though I had had no heart problems for years.

Take with you as much information, test results, imaging disks, any reports, list of allergies, medications you take.

It's possible, if your conditions are bad, they could refuse you as a patient. No use worrying about it though. You wouldn't have been recommended for this surgery if you didn't need it and obviously couldn't tolerate it.

Best wishes. Keep in touch. We aren't doctors, just patients, but we can sympathize and hopefully reduce your anxiety by caring.

Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 4/30/2014 8:21 AM (GMT -6)   
Thanks Alcie!

I have not had EDS confirmed, but I do have mitral valve prolapse, and many other symptoms. I've visited a rheumatologist who suspects it is likely, but I have been unable to get the genetic testing to confirm. I'll definitely be bringing it up to my surgeon, and I'm prepared to be disqualified based on that. Hopefully it may still be possible!

I also have autoimmune symptoms but have not been able to pin anything down (positive elevated ANA levels, but testing normal so far for lyme, lupus, thyroid, and rheumatoid arthritis). My major concern is that not knowing what is causing my Dysautonomia may be a hindrance to making a decision about the surgery. I've gone years trying to find an underlying cause so far with little solid information.

Another thing I worry about is whether I'll be able to get non-pill versions of my regular meds. I take meds for my blood pressure, heart rate, nervous system, asthma, allergies, and vitamins that keep me going on top of my PPIs. I'd be a mess if I couldn't take them for any length of time!

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 4/30/2014 4:14 PM (GMT -6)   
Ah! So you don't have a medical diagnosis for some of your conditions. I'm pretty sure your surgeon will require you to get signed off by a cardiologist and maybe by some other specialists.

As for medications, a lot of them can be chewed, crushed, capsules opened and sprinkled on applesauce. there are liquid vitamins, but you may be able to do without them for the short time it's hard to swallow pills.

Do you have a list of your allergies? If there are any medicines or chemicals like the stuff I can't take, you will need to have that with you when you see the surgeon. I have two typed pages of my sensitivities in my purse at all times. Your cardiologist can tell you what to do about the BP meds.

There are many sorts of dysautonomia. You need to tell the surgeon what you have to do, if anything about it. When I get a blood pressure spike at home I have to get up and move. If it stays high for a couple of hours I need medication. If I were in the hospital I would have to be monitored often and have medication prescribed on hand because my problem can become life-threatening very rapidly. Have you been diagnosed with any particular problems?

Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 5/1/2014 8:52 AM (GMT -6)   
Yes, I've been diagnosed with mitral valve prolapse, neurocardiogenic syncope, inappropriate sinus tachycardia, orthostatic hypotension and POTS. Normally my BP is super low, but I've been on Florinef for a few years now and it's made my BP too high, so I'm on an ACE inhibitor to counter that.
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