8 doctors and 0 answers

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. Neuro Doc 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?

[halbashes]

It sounds like you need to visit another Cardiologist.  Do you live in the USA?  Have you tried applying for something like Medicaid?

Did the Neurologist that diagnosed you with Dysautonomia give you a Tilt Table Test?  Did he/she offer you any kind of treatment?

[LisaJaneC]

Yes, I live in Florida.  I know absolutely nothing about medicaid but I doubt I qualify.  The electrophysiologist said it was dysautonomia. The treatment offered was to ablate the sinus node.  Even though research says it either doesn't work, doesn't last, or makes things worse.

[Heiferly]

I would start making phone calls to the autonomic cardiologists at Mayo, Vanderbilt, and Cleveland Clinic.  Explain your history and tell them what insurance you have, and that you are doubtful that your insurance will pay for you to be seen there but that you have not been able to get adequate treatment through the providers your insurance is funneling you to, and that you are afraid to go through with another ablation as recommended currently.  They will in all likelihood give you the phone number to their financial department to discuss payment options; you may be surprised to find that they are willing to work something out with you.   Please note:  for dysautonomia, you really want to be seen at Mayo in Minnesota if at all possible (not one of their other locations).  

There are links to the major hospital dysautonomia centers' websites here:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

I will try to think of more suggestions for you.  I truly think you would benefit the most from being seen at one of the big name hospitals where the specialists have seen many cases like yours.  Which hospital are your current docs working out of?

[LisaJaneC]

Thank you so much Heiferly!

I've been in contact with Mayo and Cleveland.  The Cleveland Clinic in Florida (Where I live) said there is nothing at that location that offers Dysautonomia treatment.  I am currently awaiting contact from the financial dept. from Cleveland in Ohio (where they have a autonomic diagnosting center).  Mayo acknowledges my problem and offered to see me, however, they said they never never never gives financial assistance the way Cleveland does.  Originally I am from Pennsylvania, so I also have called Deborah Heart and Lung Hospital in NJ...and they have acknowledged my desperation from treatment and I am currently waiting to hear from them as well.  I also filed a greivance and appeal letter to my insurance which they claim will take at least 30 days to hear anything let alone be able to give me any treatment.  So, it looks like I am heading this one alone.  I mean, I would be in debt for the rest of my life if I could only feel well again! Thanks for all your help!! I really appreciate it.

[BrittRae13]

I am also 23. i was diagnosed with NCS at 13 and have been struggling with it on and off for years. I was recently at the Cleveland Clinic after going through many doctors and have been diagnosed with POTS as well. I hope all goes well for you.

[Kessey]

I also live in Florida. If you live anywhere close to Orlando, Dr Bello at Mid Florida Cardiology Specialists at Orlando Health is my doctor and has been treating me for 2 years. He has also done my heart Cath. For SVT (also unsuccessful like yours), but he is very knowledgeable about autonomic dysfunction.  He has a great bedside manner and treats you with respect.  He will also go the extra mile to find a treatment that works for you.  His office staff is very nice and will do everything they can to help with the insurance stuff.  They also help with Social security disability, so you can get Medicare.  Good luck to you

[katie3939]

Thank you for recommendeing Dr. Bello.  I haven't seem him yet.  Do you know if he treats POTS specifically?

Thank you again.  I have been searching for someone who knows about POTS in Orlando.

Katie