Frustrated....

I have been dx with inappropraite sinus tach (controlled with bisoprolol 10mg) and NSVT associated with sudden syncope (uncontrolled).

I'm currently seeing a great EP who I like very much, but he can still drive me nuts at times!!

I've had to EP studies and they weren't able to induce my NSVT, so no ablation. My second EP which was performed by my current EP resulted in me ending up with a implanted loop recorder, not something I wanted, though I agreed to it... I think I was hoping and believing that I wouldn't end up with it so I agreed to it. Yeah, that resulted in a minor freak out in recovery when I realized he wasn't able to ablate and I had the loop recorder.

I really didn't want the loop recorder, because then we are basically waiting around for me to faint. I mentioned this to my EP, and he was like "oh, no it's not like that" but then at my follow appointment after the implant he said, "well I guess now we just need you to faint!" ugh!!!

I've had the loop recorder for almost 4 weeks now... and I've been in to have readings taken off of it 3 times now... it has always been full (the first time because they needed to adjust the settings)  the second two times because my heart is just crazy and always setting it off.... however these recordings aren't the ones we are waiting for or looking for... so they are of no help. The settings are all correct so I am going to continue to set it off this much. However when getting it read at 2 weeks post implant my battery level was already down to 75%.... probably because of how much I set it off, at the rate I am going I will be lucky if the recorder lasts longer than 2 months!!

And then during this time I ended up in the ER because I couldn't take my bisoprolol and ended up with crazy fast heart, ER doctors said I  SVT.... I've never recieved this dx before. So when following up with the EP (not my EP though because he was out of the office) the EP said he couldn't tell from my loop recorder recordings if I was having SVT or it was my inappropriate sinus tach! If he can't tell that from the loop recorder then how is it going to help my EP with the NSVT?????

So I am currently very frustrated because the loop recorder is going to be useless in a few months, and it doesn't seem to give that great of recordings either. I don't want to wait around until I faint again... I don't think my EP understands how scary it is to walk around every day knowing that without warning I could drop at anytime... not knowing if this will be the time that I sersiously hurt myself or someone else... I just can't live this way!

Part of the problem that I had though with needing a recording of the NSVT is that I didn't have the record of the holter when it was associated with my syncope. I have that record now... and it's a 12 lead recording... so lots of great info!

I am seeing the EP on Friday to talk about this... I am on edge right now. My hopes are sky high that he is going to want to try ablation again and that he will be able to do it this time because of that recording. If he tells me he wants to keep going with the loop recorder I am going to crash and crash hard. I just want to be fixed.

Another thing I have been thinking about is epicardial EP studies and ablations... I mentioned that to my EP before and he said that it might be an option but that he would know more when doing the orginal EP study, my impression was he would switch to the epicardial EP study during my first EP study if he thought it my be there, and he didn't. Should I explore this option with him again?

I'm just very frustrated and because my appointment is not until Friday my hopes are just going to keep building, to the point, that if i hear bad news from him, everything is going to go out of my mind and I am unable to discuss anything with him and just end up leaving the appointment in tears... it's happened before.

I don't do you guys have any suggestions at all? Are my expectations out of line?

[Mom2four85]

With your family history, syncope and NSVT I would suggest you see a specialist at Mayo Clinic, Cleveland Clinic or Vanderbilt asap - they will need all of your medical records in advance so be prepared if you do go to one of these places you'll need to do that in advance.

Here's a list of dr's and their numbers, see if you can find one close to you and ask about a pacmaker/icd combo as a preventative against SCA and to help with your syncope issues.

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

Hopefully they'll be able to find out what's going on and treat you appropriately - NSVT is very difficult to find and ablate sometimes.

[jeric]

Unfortuneatly that is not an option right now.

I'm afraid even an ICD wouldn't be able to prevent me from fainting either... sure it would probably stop the arrhythmia, but that would be after I fainted. It all just happens so fast, the time between the onset of the arrhythmia and me dropping is so little, that I would probably still have the syncope. I think that is probably why my current dr is not going in that direction, at least from the beginning.

I also got the impression from him that he felt like maybe they had read the EKG wrong in Spain and that it wasn't related to my syncope... but I now have that tracing so he actually see it.

I don't know I'm still very uneasy about the idea of getting a pacemaker/icd still... all I want is for my arrhythmia is be ablated and then I never faint again, but maybe that just isn't possible and that is what really scares me.

[Mom2four85]

I've fainted and had arrhythmia's since I was 9 years old, I'm now 44 and never thought anything would help with my fainting issues.  I had a tilt table test that showed when I faint my heart stops and my BP tanks to nothing in less than a blink of an eye, so I understand what you're going through.  

I also found out that during my EP Study and ablation, I have malignant PVC's; Polymorhpic VT and now NSVT runs about every other day sometimes 2 or 3 times a day, along with PAC's PSVT and very frequent PVC's even after ablation.

With a pacemaker/icd combo - the pacemaker can be set like mine at 60hr then when it senses your hr going to fall it will raise it back up and you may get some pre-syncope issues but that will be all, or they may have to set it to pace you a bit more or higher rates, but it does work for syncope issues.  

The ICD will sense when your HR goes high and if you have a ATP which is automatic it will sense your hr's going high and can tell the difference between exercise and dangerous hr's then will pace your heart rate back down or if it can't and your hr remains over their set rate say of 220 like mine, then it will deliver a shock.

I have a Boston Scientific Teligen 100 if you want to do some research on it - it's a very reliable unit and works for many people that I've talked to on my icd support group forum.

Good luck on whatever your doctor and you decide, just keep an open mind about PM/ICD's it saved my life.

[jeric]

You know, when I think about I think when it comes down to it I will be open to the PM/ICD, only because that is a type of treatment, and if thats the treatment that will help me then I will do it. I've recently come to light that I think my problem with the loop recorder wasn't so much that I didn't want another thing in my body, but that I didn't want something that wasn't actually treating me.

I just really want to exhaust all of my other options before going to the PM/ICD... I mean I really don't want to give up on ablation yet, especially since I now have the EKG recording they wanted, and it is a much better recording that any they would get from the loop recorder. Also, I'm still wondering if epicardial EP study/ablation would be an option for me.

I just really need to discuss this all with my dr, I'm just afraid... no terrified that he is not going to want to try antother EP study so soon after my last one (it's barely been a month).

From the research I've been doing it seems to me that a PM/ICD would prevent me from going in to v-fib and lessen my chance of SCD, but it would most likely not prevent me from fainting, because I faint a few beats into my v-tach. This is something I will bring up and he can explain to me if this becomes my treatment.

Right now it just comes down to waiting for my appointment on Friday... and I'm not very good at waiting, and I have no patience. My nerves are already shot, my whole body is worn out and I am sleeping very poorly. When I am awake and not at work all I do is lay and stare at my calander looking and friday where I have the appointment marked or researching v-tach, treatments, ablation, PM/ICDs... it's crazy by this point I am reading the same articles over and over.

and it's only Tuesday night... I know myself and this is only going to grow as it gets closer to the appointment.

[Mom2four85]

I feel for you, it's not an easy decision especially something that will change your life.  Thankfully they found what was wrong during my first EPS - malignant pvc's - Polymorphic VT where I had long sustained runs 3 times during the study.  

My VT is similar to yours; I still get crazy NSVT runs; but been converted many times and shocked once. The Boston Scientific Teligen 100 I have is great at sensing dangerous VT and converting the rhythm - I get twinges when mine starts and I keep a journal so when I get my ICD interrogation reports I'm almost always right on with what I'm feeling.

Here's some info on it - Quick Convert delivers a burst of ATP in the VF zone to avoid painful shocks for pace terminable VTs below 250 beats per minute, but mine's set at 220.
http://www.bostonscientific.com/Device.bsci?page=HCP_Overview&navRelId=1000.1003&method=DevDetailHCP&id=10106021&pageDisclaimer=Disclaimer.ProductPage

My situation was almost too swift for me and left my head reeling, I went in for testing for fainting, then my EPS and within a few days I had other tests and the PM/ICD implanted, not much of a choice and I still question my decision almost 2 years later, but I know I made the right decision because of SCA again.

I would definitely ask all the questions before about the implant, also try to talk to others who have gone through it -  http://www.icdsupportgroup.org/board/ has a lot of great people who have all different reasons for a pm/icd - tons of info and even some who work in the medical field in there - if you haven't join and talk to them about what's going on =)

Good luck on Friday and getting answers from your doctor and making your decision.

[jeric]

I have the worst luck ever. Got a call from the dr's office today... had to cancel my appt for today because an emergency came up, which I understand but the next appt is next week Friday, and it's not because he is booked, he's only in the office on Mondays and Fridays and next Monday he is not there so the first chance to see him would be next week Friday.

I can't, I just can't go through another week like this one. I m crushed, anxious and exhausted... it just *****.