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Ep study and possible ablation scheduled..


dizzygirl
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Hi folks...

I got home last night from seeing Dr. Grubb... and he wants to do an EP study... and if he can find the source of the tachycardia he wants to ablate...

He told me that there is a difference (and so did Bev a few weeks ago) between pots tachy.. and the high tachy that I am having.. he said that mine is to high.. and that there is a difference in doing an ablation for pots and a rythym problem.. he said that he is not going to do an ablation because of pota tachycardia.. but because of a rythym problem..

I posted here not too long ago about my high tachy (204-240 resting rate)..

so i talked to dr. Grubb about that...

However I am quite nervous about this...I am scheduled for the EP study for November 21st..@12pm..I actually am not sure if he will do the ablation on the same day.. I imagine that he would.. I dont know.. the nurse told me that I would have to come back to get the results of it.. so I'm alittle confused.. and am going to call them tuesday and clarify...

Have any of you had an abaltion done for a rythm (SP???) problem and not pots related?

Will I still have tachycardia? HMMMMM :)

averynervousedizzygirl!!

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Hi ernie..

yes ..i most defiantely trust dr.grubb on this issue... as he is the one who would know...

and i have some comfort knowing that Dr. grubb is going to be the one doing the test and stuff.. I think dr. Grubb is great...but I'm still kinda nervouse (sp.. sorry I cant spell today.. i know that doesnt look right.. but cant think of the correct spelling!! LOL)

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Guest Finrussak

I have to add that YES trust Dr Grubb...as was stated, he would be the one to know what to do...he is a VERY capable cardiologist with exceptional knowledge about dysautonomias....usually they say NOT to ablate becasue the POTS etc comes from faulty signals, usually chemical...BUT in your case what I think Dr Grubb is trying to explain to you is that while you may have both issues going on the high tachy really merits the EPS. Those studies will tell him IF you have something wrong within the heart muscle ( nerve bundles there) and if yes, thats when he will ablate ( which is like cutting a frayed electrical wire so it cant cause short outs). I am absolutely so trusting of his expertise that I know he wont go ahead with any permanent treatment like ablation unless he knows it will help you. Of course if you also have some POTSy stuff, that will remain, but will be better. Then you can try other things like meds.

I know how nervous you are...when this all started for me the Drs here didnt understand POTS etc and they had me scheduled for ablation and I was T minus 30 minutes before they called it off.....thankfully.

Good luck and keep us posted.

Finette

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I would trust Dr. Grubb from what I have heard. Just know that it may not stop all the tachycardia. I have two EPS studies with ablations, that last one I ended up with a pacmake as my heart rate would go to low. The good news is I only have some tachycardia times now. Just be sure to make sure you are informed. Are you having a radiofrequency or cryoalblation. I thought that the cryoablbtion when much better, and in fact the put the packmaker in at that time and I felt less pain then I did with the radiofrequency. If the tachy, fast heart haert is keeping you up all the time and very bothersome, I would go for it. I will help alot. Good luck, you will have to let us know how it goes!

Amy

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:) Hi,

I can qcompletely understand your nervousness about the EP study. But maybe I can help put you a little at rest by saying I have had the study and I shared your anxiety before the test. My cardiologist suspected that I had POTS but also believed that that the source of my tachycardia might also be an AV nodal re-entry problem and that may be what Dr. Grubb suspects is going on with you. My cardiologist recommended the study as a way to rule out problems before he proceded to the tilt study test that confirmed that I had POTS. I think this is a pretty standard way of proceding if the source of your tachy episodes is in doubt. In my case, my doc told me that if they had found anything during the ep study, they would have done the ablation there and then, which makes sense. EP studies are costly and it takes a good deal of skill to locate the source of the arrythmmia, thus once it is found, it is better to deal with it right away. For me, the ep test ruled out any electrical signal problems with my heart, however, and this was very reassuring, especially after the positive tilt table test. For other people that I know have had the test and for whom an electrical problem was found, their ablations resulted in significant improvements in their quality of life. It really can turn things totally around for some people.

The EP study itself is not painful. Before the test, they give you a shot of valium to relax you and then insert some catheters into your groin which will be threaded through the veins to your heart. It sounds bad but I never felt any pain throughout the whole procedure. Most procedures usually take only about an hour to an hour and a half. Mine was three hours as the doc wanted to be absolutely sure that I had no electrical signal problems. Being drugged up, those three hours went very quickly and I was surprised when the doctor told me how long I had been in there. I was fully conscious for most of the test--which is what had freaked me out beforehand--but I was quite relaxed throughout the whole process. The most uncomfortable part is afterwards where you have to lie perfectly flat and still for a few hours so that the insertion points for the catheter can seal and heal. My back hurt a little bit becasue of this but I really wasn't in any distress. You may get bruising at the catheter insertion points after the procedure, but for me, it was no worse than any bruise I've got from banging my leg on a table.

I am glad that I had the procedure done. You should, however, as with any procedure, ask plenty of questions before you decide to do this. You need to feel comfortable that this is the best thing for you.

Good luck, and if I can give you anymore "layman's" advice about the procedure, just ask.

India :)

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Guest Julia59

Linda,

I know you trust Dr. Grubb, and i'm sure he will get down to the bottom of this soon.

Ding, Ding, Ding! I can't believe the Docs in your town didn't take this high HR more seriously. Dr. Grubb wanted to do an EP study on me in the beginning, but I didn't want to have it. My symptoms were not nearly as severe as yours, and he agreed it could wait. I still have never had it done, but I do have the cardiac loop recorder. I'm not afriad to have the test---I just wasn't sure I needed it at the time.

I wish you the best of luck---and know that you always have a host here in Toledo who will look out for you when you come to town.

Take Care,

Julie :0)

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Hi all thatnks so much for support!!

I just want to hit home the fact that I truly trust Dr. grubb and have no worries in that regard... I guess I'm just alittle nervous in general...b/c I'm not real sure waht to expect.. you know the unknow ...I know that Dr.G would never suggest something that would make me feel worse....

Like I said i think the world of Dr. grubb.. he truly is godsent!!

For the past 3 almost 4 yrs.. no other cardio would do an EP study on me.. and I feel that w/ Dr. Grubb that I finally am starting to get some help.. finally...

Julie-- thanks so much for your generosity during my stay in toledo.. you'r a real sweetie!!

And if you are ever in Erie.. be sure to let me know I'd do the same for you!!

I will keep you all update..

Hugs

linda

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to answer your earlier question, plenty of people have rythm issues without autonomic dysfuntion and do fine with ablation.

And, as Dr. Grubb surely explained to you, there is a difference between high tachy that doesn't get provoked by any particular physical event and the functional tachy you get when your bp is failing you and your heart kicks it into high gear to keep your brain fully oxygenated...

Like every other disorder or disease out there, having POTS doesn't mean you can't have something else too. The EP procedure, btw, is pretty standard fare these days...and if Dr. G is doing it, I'm sure you'll have one less thing to worry about!!

best, Nina

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EP stands for electro physiology, or basically, the electrical activity and nerves in and on the heart.

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It is not necessarily the case that you get an ablation at the same time as the EP study. A few weeks before I had an aV node ablation, I had an EP study so that the docs could see whether that ablation would be helpful. The two times I had ablations, I was given a more general anesthesia because of the possible pain associated with the ablation that couldn't be dealt with using sedation. While Dr. Grubb is still the expert, I would get clarified from him whether the two procedures will be done together and what the process is like. I would also ask about the possibility that you might need a pacemaker at the time of the ablation or thereafter. From what I recall, when I had the sinus node ablation, the consent form indicated that I gave approval for a pacemaker at the time of the ablation in the event needed. Each of the times I had ablations, I was kept overnight in a telemetry unit for monitoring.

As we all are different, I think that the most important thing is to have trust in your doctor but at the same time be your best advocate. You need to feel comfortable. While we can provide support and share our experiences, your best source of information is your doctor!

Good luck!

Lois

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i have had a total of 11 ablations - 10 of which were in a marathon 8 hr procedure at the university of virginia. i can honestly say it was not fun and probably would not do it again. The first one i had done in WV and it was no problem at all. my recommendation is to totally know the risks. my heart rate ws 260 and was ruining my life. i had the ablations done before i was diagnosed with POTS. - unfortunately the ablations sent me into complete heart block and now i have a pacemaker. was it worth it? probably - its hard to live with a HR in the 250-260 range. Just know what can happen and decide if its worth it for you... and yes you can still have tach after ablations.. Good luck to you - hope all goes well

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Hello Linda! :angry:

I'm nearly at the EXACT same place you are now. My cardiologist has recommended an EP study with possible cryoablation, and I am undecided about it. I have inappropriate sinus tachycardia (which I suffer from daily) and also occasionally suffer from PSVT (where my heart goes off wildly, then slows back down and goes back into a regular rhythm). I have the PSVT about once a month. My cardiologist has assured me that he will ONLY ablate if he finds a re-entry pathway that shouldn't be there. He promised me that he would not touch my SA node. I have gone back and forth in my decision to go ahead with the procedure. Anyways, just know that YOU ARE NOT ALONE. Keep us posted on what you decide to do!

Take care,

Lauren

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hi linda -

i'm a bit delayed here, but just wanted to chime in that i'm really glad that you had your appt with dr. grubb. as others have said, he probably is one of the only docs i'd trust with an ablation in POTS-land, so i'm glad that he'll be doing the testing.

i definitely agree though that you should call & talk to beverly as soon as your able to clarify more what the plan is in regard to what will in fact happen on the 21st. or if there are several options then to know the if/then possibilities. i know that for me this would make me feel much better going into the trip.

hang in there..i really hope you get some relief soon!

:) melissa

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My sister actually had an ablation 1 year ago. She's 22 and they found two rare heart defects during her second labor. She had WPW and Epstines and she went through the ablation and is fine. Better than normal. She had a very high resting heart rate also and the only thing she said was that it felt like she didn't have a heart rate because she couldn't feel it all of hte time anymore. It just takes getting used to. But she is better htan ever and very grateful she had it down. Sorry this is late so late... but i hope it helps. Good luck!

Hillary

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