Help! Need to make a quick decision

Hi all! I’m in a bind here and hope to get advice.  I’ve scoured the internet and haven’t found anything useful.  I am currently in a hospital bed scheduled to have a pacemaker put in in about six hours. This all is rushing at me so fast.  Long story short, I was in the hospital for testing related to seizures and they discovered that during a seizure my heart stops (for 3-5 seconds).  Immediately they’re transferring me to another room and booking me to get a pacemaker. But here’s the thing... if this only happens when I have a seizure (they’ve monitored me continuously for three days and three nights now and that’s the only time there’s been an arrhythmia.), and my seizures are very well controlled when on medicine.  The only reason I had these seizures was because the neurologist pulled me off my meds to see if he could record the seizures to see what part of the brain they came from. The medicine works so well that it was actually 48 hours from being taken off them that I started seizing. My question is if I NEVER have seizures when I’m on my medicine, and I never get arrhythmia unless I’m having a seizure, then why on earth are they pressuring me that I need to get this pacemaker put in right now?? Scared and confused and would appreciate any experience anyone has had that’s similar 

9 Comments

Hello Shawgirl

by IAN MC - 2018-03-05 06:09:32

If I understand you correctly :-

-  you suffer from "seizures"  which I assume are caused by the brain mis-firing in some way

- the Drs want to give you a pacemaker because your heart is mis-firing in some way

- you feel that the brain mis-firing, which is controllable, is the cause of the secondary heart problem

Obviously cardiac pauses are not good news and a PM should prevent those from happening  BUT ....

You must TALK TO YOUR DOCTOR  a.s.a. p. and clearly state your concerms just as you have done in your post . There is no way you should get a PM unless you clearly understand why you are having it.

Best of luck

Ian

 

More info

by ShawGirl - 2018-03-05 06:27:51

Yes you have the facts correct with one minor correction.  It isn’t that “i feel” that the seizures are causing the heart to stop.  I was on continuous brain wave and heart monitoring and each time, the seizure showed up on the brain wave just before the heart stopped.  I would talk to the doctor if he would come in and see me. Trust me, my assertiveness is not a weakness lol (the nurses here can all attest). The neurologist told me yesterday morning that the cardiologist would see me soon (same day) and schedule the procedure for the next morning.  All  day I asked everyone when was cardiology coming and nobody seemed to know.  Meanwhile they’re doing pre-op instructions and one nurse even came in and mentioned signing consents.  To that, I said absolutely not.  I’m not signing anything until i speak to the cardiologist. I just like to be armed with info before talking to someone. 

This whole situation is crazy. Meanwhile, I’ve been back on my seizure meds for about 20 hours now and haven’t had a single event in that time (compared to the day before when I had five). 

You did the...

by donr - 2018-03-05 07:56:08


...only thing you can do - refuse to sign consents.

They can do NOTHHING w/o them.  Treust me, a cardio will be by soon.  Probably angrier than a wet cat, but one will be by.

Donr

Make sure ......

by MartyP - 2018-03-05 10:01:52

Make sure that whoever is doing the surgery has tons of experience - has done hundreds - don't accept a newbie surgeon.

Ask what pacemaker they will be using and why did they choose that manufacturer and model.

Ask how many leads they will put in and why.

The doc should ask which is your dominant side as the PM will usually go on the OTHER side.

I hope and assume you are in a hospital with a good reputation and one where the infection rate is low and they take full precautions about infection.

If you at all squemish (like me) and the neuroligist is OK, go for full anesthesia (they usually use Propofal) as I cetainly didn't want to know what they were doing.

Usually the surgery is easy 1/2 to 3/4 hours and very little pain afterwards, but we can "talk" about that later.

After the surgery, come back to us and we can "talk" more.

My heart stopped for 31 seconds in the hospital, 4 hours later I had Sparky.

 

stick to your guns

by Tracey_E - 2018-03-05 10:12:31

I'm no medical expert but it sure sounds like they are rushing you into something you may not need. The pauses are controlled, and 3-5 seconds isn't that long. For sure don't sign any consents until you talk to an electrophysiologist. Not a regular cardiolgoist, an electrophysiolgist. They are cardiologists with advanced specialization in electrical systems of the heart and that's who you want doing the surgery if you decide to get it.

Different situation because I knew I needed it and had every intention of getting it, but they kept telling me the surgeon would be in but he never showed up so I refused to sign consents. I also talked to the St Judes rep beforehand, asked him questions and he let me see the device I'd be getting. Not signing consents will get their attention. 

Sooooo

by Tracey_E - 2018-03-06 12:20:38

what happened? 

Update

by ShawGirl - 2018-03-06 12:27:06

sorry for the delay, couldn’t figure out how to update - then I realized I wasn’t logged in. (New meds have my brain scrambled).  I asked to be transferred to another hospital for a second opinion.  I’ve had a cardiologist for several years for my syncope but she doesn’t have rights at he first hospital. I trust her.  If she says I need it I’m getting it. Waiting to see her now.  

Win-win ?

by IAN MC - 2018-03-06 13:19:49

If you don't need a PM , your seizure drugs will prevent those cardiac pauses, if you do need a PM you automatically get free life membership of the Pacemaker Club.

Let us know the eventual outcome ! 

Ian

The outcome

by ShawGirl - 2018-03-06 14:13:55

my cardiologist wasn’t as concerned. She says jumping to a pacemaker right now is too rash.  Apparently the heart pause thing is the same as when I get vasovagal syncope (which I’ve had for 20 years). She says it’s very unlikely that it’s going to just stop all together and not restart.  They’re going to implant a loop monitor thing for 3-5 years to get some more solid data.  She did say she isn’t ruling out PM down the road- just not yet.  Thank you all so much.  And who knows I may be back soon.  LOL. 

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