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ASD closure with simultaneous SA modification?
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ASD closure with simultaneous SA modification?

I am 23y/o female.  I went through a cath ablation 5/8 for what was thought to be SVT.
However, once in, the EP couldn't locate any SVT.  I went into Atrial Flutter twice which went into Atrial Fibrilation that required electric aversion.  The Aflutter was ablated...However, following the procedure, I suffered a TIA.  
Both Preablation and postablation, I have been extremely symptomatic including: I also go into bouts of complete weakness, extreme sinus tach (~163bpm) sitting or standing, palpitations, migraines, extreme fatigue, horrible night sweats. TEE showed large PFO or small ASD.  
Problems:
1. First cardiologist said I need 2 neurological events before he will close it.
2. Because the first ablation didn't help any symptoms or the sinus tach, one ElectroPhys wants to do a sinus node modification and the other says no, and that I have to either "deal with it" or stay on bloodthinners and beta blockers (which, I cannot because I have hypotension)
3. A third electrophys says I have dysautonomia and that I need to take part in autonomic research studies if "I wish to have more answers"
4. Second cardiologist says "something is really wrong with you, but I can't help you"
5. My insurance won't allow me to see anyone other than 3rd rated cardiologists and doctors alike.
6. My short-term disability is running out, and I have no more answers than I did 7 months ago. I don't have family within 8 states and finally the understanding of my employer is failing.

Who do I trust?  Where do I go from here?  If my insurance won't allow me to see a decent doctor...is there anyone that could/would help me? Can an ASD/PFO be causing many of my symptoms?  Should I allow the SA modification?  Can they do both the ASD/PFO closure and the SA modification at the same time?  In the long run, can ASD/PFO really put me at risk for developing pulmonary hypertension? or weaken my heart?
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773637_tn?1327450515
Dear LisaJane,

It sounds like there is a lot going on here.  Based on the information that you have given, I am not convinced that you have a sinus node abnormality, nor do I think that you need sinoatrial (SA) node modification.  It sounds to me like the atrial flutter, which has now been ablated, was something that was inducible in the cardiac catheterization laboratory (as was the atrial fibrillation, but may not have actually been clinically significant.  Your small ASD/PFO is just that—it’s small, so it can not cause pulmonary hypertension or weaken your heart.  It is unclear what caused your TIA, although it is certainly possible that you had clot formation in your heart in association with the ablation that just happened to cause your symptoms.  Typically, the risk associated with a PFO for a stroke is associated with what is called an atrial septal aneurysm, which is a part of the atrial septum (the wall between the two atria) that is much floppier than usual.  These can certainly be closed with a device, if it is truly felt that you had a TIA associated with this.  

Finally, your symptoms really do sound like dysautonomia, especially if you have a significant drop in blood pressure when you stand up in concert with your sinus tachycardia.  I’m not convinced that you need to undergo numerous studies for dysautonomia diagnosis or therapy, as the therapies for dysautonomia can give quite variable responses and are often hit-or-miss, and it sounds like you need the therapy, anyway.  I will refer you to two websites for this that may be helpful:  Dysautnomia Information Network (www.dinet.org) and Dysautonomia Youth Network of America (www.dynakids.org).  Both of these offer information about the disease, including symptoms, home treatments as well as information about medical treatments, and physicians who see these patients.  One more thing about adult-onset dysautonomia—there is a higher incidence of this being a paraneoplastic occurrence, meaning that it can be associated with cancer, so unless you have had these symptoms for a number of years, it should be further evaluated.
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Thank you for your thorough response. I have had a severe episode of extreme tachycardia maybe twice a year for about 3-years.  Starting in February of this year they started happening weekly out of the blue and by April I was having them every day. When people would see this happening to me, they describe it as though they believed I was dying.  My face would be grayish blue, extremely sweaty, shallow breaths or barely breathing, and I never really spoke or felt capable of responding, but I would always remain consious and always remember the episodes.  If I could lay flat on a cold surface (tile floor or pavement) it would stop in about 3-4 minutes with the conclusion being vomiting. And the whole time, I would be the only person that would be calm, and after it was over, I would play it off out of embarassment.
The TEE bubble study showed bubbles that had passed and that there was blood flow through it without me coughing, or agitation, etc. because they put me unconscious to perform it.  I no longer see that cardiologist because he knew I had a PFO or ASD prior to the TEE and played stupid (as I found from my medical records he knew about it from when the Electro did the Ablation 4 days prior. Both the diagnostic cath and ablation cath went through to the other side of the heart. The Electro called him mid-procedure to inform him of this - it is noted in the medical record) My fear is that perhaps this hole is bigger than he let on out of fear I would take action against his mistake (as he never put me on coumadin until 3 days after the TIA).
During my tilt table, I had what a second cardiologist called a very abnormal reaction.  I did fine when tilted 80* and when I was put flat again to put in the meds, my heart rate soared to sinus tach 153bpm BEFORE they even put the meds in the IV. But here is the thing...my blood pressure while low, didn't drop throughout the tilt.  If anything my diastolic number has always been "high" 95 or 98 and my systolic has always been low 107 or in the 90s.
I'm really worried about the hole because on both sides, my family has a history of sudden death and at an early age...all related to heart issues.
In regards to the dysautonomia, I have tried the increase salt intake, keeping myself hydrated with gatorade or pedialyte every day...and nothing has helped.
In regards to the cancer correlation, my calcitriol levels and lymphocytes were elevated and my catacholamines were mildly elevated but the endocrinologist said that it didn't mean anything because MRI of my brain, abdomen, and pelvis were all clean.
And finally, when you say further evaluated...can you give me a hint as to what type of doctor?
Cardiologists and Neurologists alike tend to not know where to start with dysautonomia, most don't even know what it is...at least in south florida.

Thanks a billion!
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773637_tn?1327450515
Without seeing your study, I don't actually know how large your ASD vs. PFO is, although I would be willing to guess that it is not moderate or large, based on the information that I have here.  

As far as the tilt table results, dysautonomia is sometimes called postural orthostatic tachycardia syndrome, which is associated with a significant tachycardic response with "orthostatic" stress (tilt table, in this case).  You don't necessarily have to drop your blood pressure--not all patients with dysautonomia do.

Therapy for dysautonomia involves much more than hydration and salt supplementation.  Read those websites that I listed for other things you can do at home.  There is also a number of medications that can be used for this, which likely will be useful for you.  Further evaluation for cancer is something that a primary care provider should be able to do to ensure that this is not a paraneoplastic phenomenon.

Finally, as far as finding a provider who understands and treats dysautonomia, again look at the websites that I listed.  I will say that most physicians, including cardiologists and neurologists, don't know what to do with dysautonomia and even feel uncomfortable with it.  It doesn't fit their typical paradigm for disease, can be difficult to treat, and is somewhat "mysterious" to most.  Therefore, you do have to keep looking and may need to travel a bit to find someone who knows what they're doing.
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