Overactive SA node treatment???

[Shroom]

Hi, I've posted before. I'm 21 female about 125lbs. I've been diagnosed with IST (overactive SA node) and some possible reentry atrial tachy. For over two years, I'v had episodes where my rate goes up to 160-170s, usually sinus. These require ER trips to get IV cardizem. I've tried every med.  I'm allergic to betablockers and Na channel blockers. Calcium channel blockers don't prevent episodes, but stop them when given IV. These episodes happen every 3-7 days. I no longer bother to go to the ER, so my heart is fast 24/7. I had an EP/ablation in Feb. It was unsuccesful, but the doc only ablated a few cells and did not address the IST. I pass out a few times a week, in shower, biking, etc. My RV is slightly enlarged, my EF is about 45. I also have kidney problems now (@50% function). I don't have a cardiologist anymore. Frankly, no one wants to treat me b/c they don't know what to do. I was told an SA node ablation and pacemaker would help tremendously. No one will do it, though. I had some VT suspect cases. I've hit all the ryhthmns (AT, AF, VT, VF, torsades) when on meds. I died once from meds and had to be defibbed several times. What steps should I take now to get help? Would an SA node ablation be reaonable? I don't want to try any more meds. My life is barely functional right now, so just doing nothing is not an option. What are the long term effects of a high rate for extended times? I am on a low sodium diet for my kidneys (500 mg/day). My BP is fine (115/70). Are there any alternative ways for me to get help? Actupunctue? At this point I just need someone to help m

[Shroom]

I saw about 15 docs at Mayo. the one I was most impressed with was Dr. Evans. Is that who you saw?

[NHS]

So pleased to learn that your ablation was successful.
How long did it take for you to return to your usual lifestyle?

NHS

[dquenzer]

Who did you see at Mayo?

I had an ablation at Mayo, and my doc was excellent and very thorough.  I had afib, pac's, atrial flutter. It took him eight hours, but it looks like he got them all.  At least I've been really good in the past 2 months.

I'm not sure it's appropriate to give referrals on this site, but if you email me at ***@**** I can give you his name.

[jan]

Did you try having your dr. right that it was medically necessary for you to go to CCF?  I had an experience with surgeons, one of the surgeons on the team did not take my insurance, so the dr. wrote the above and voila!  Mine wasn't as medically necessary as yours is!  Try it!
If that doesn't work, call your insurance co. to see what they suggest and call CCF and see if they can help will help getting your ins. to cover.

[Shroom]

hey, thanks for the reply. I have seen doctors at Mayo and at Abbott in MN. My insurance will not cover Cleaveland, unfortunatly. I sorta fell through the cracks at Mayo. And Abbott, well, let's just say I'm not going back there again! The doc gave me flecaiide and didn't check to see if it was on the list I'm not supposed to have (over 60 meds I can't have). In short it was and it killed me. It was a horrible experience.

[Kristin391]

You need to go to a center that specializes in problems with electrophysiology such as the Cleveland Clinics, Mayo Clinic etc.  This is very treatable and manageable but you need to right group of professionals to handle these issues for you.  To be at this point is not acceptable and not necessary with what we know and can do today.  Every day there are breakthroughs in the world of electrophysiology.  I personally know many electrophysiologists who are excellent at what they do.  St. Luke's Medical Center in Milwaukee, WI has excellent physicans who are active researchers in these problems.

[Cleveland Clinic]

shroom,

At 21 I am unclear why exactly you have all of the symptoms you have.

I'm not sure if you've sought treatment at a large tertiary referal center but that would be my next step, both in an electrophysiology and nephrology clinic.