Should I get a pacemaker for NCS?

Hi all,

I am a 35 year old woman recently diagnosed with cardioinhibitory neurcardiogenic syncope with reflex anoxic seizures. I have had this all my life. I have fainted probaby 15 times that I remember, with numerous pre-syncopal episodes. Sometimes I am able to stop them from happening because I have a few seconds warning. I have had to lay down in the bus station, the department store, my boss' office, etc to stop episodes. The only time I have hurt myself so far is when I fainted in the bathroom and hit the toilet with my head on the way down - I cracked the tank clean in half! Recently however, I started to have an episode while driving. I was able to pull over and switch drivers. My cardiologist laughed at the idea of a pacemaker for this; he said, people faint, get over it. I have been told my whole life just to toughen up, that it's no big deal, etc. The cardiologist sent me to an EP for my tilt table test. I fainted 3 minutes into the test, with no meds. My heart stopped and they gave me atropine to help start it back up. Also, IV fluids and promethazine (I am usually nauseus and lightheaded for hours after an attack.) I guess it was a surprising result to the test, because it was purely cardioinhibitory. My bp was fine until my heart rate dropped (it was 86 laying down, then went up to 146 then stopped.) The EP said there were no meds that would help me and strongly suggests a pacemaker. So now, I just don't know what to do! I have a husband and a charming 2 year old son that I want to be able to take care of. I just don't want to jump into the surgery, and multiple surgeries for the rest of my life, if I don't really need it.

So, what do y'all think? Thank you for any advice!!

7 Comments

New PM Maybe

by SMITTY - 2013-04-06 06:04:46

Hello Deppgore,

Let that EP implant a pacemaker for you and stop running risks of passing out at a most inopportune time. Such as passing out while driving with that charming 2 year old son in the car with you. It will probably make you feel better too.

Getting a PM will require a change in your daily routine for a few days, but except for lifting heavy items for a couple of weeks it is not too drastic. After that, you should not even be aware you have a PM. I'm on my second one I neither of them has changed anything I do. Of course I was 71 when I got my first one in 2000, but neither of them has interfered with anything I want to do.

Since I think I sense a little anxiety about the idea of getting a PM I'm going to "walk" you through the surgery, based on my experiences. My last implant was in 2009 so the procedure may be a little different now. But I went 9 years between implants (battery ran down on the first one) and the procedure had changed essentially none, so I would expect what I experienced was pretty close to what you will see. Any way for what it worth, here it is:

The following may give you an idea and relieve some anxiety about PM surgeries.

As I said earlier, I got my first PM in 2000 and the 2nd one in 2009. Both were done in the same hospital but by different Drs. Both surgeries were almost identical. So to give you some idea of what you are facing:

On arrival at the hospital I was given a some of the hospitals latest fashions to put on and told to lie down and get comfortable as it would be a little while before the surgery. I read the paper and watched TV for a couple of hours while other PM patients were also being readied for their PM . After about an hour I got an IV and spent the next 3 or 4 hours being "prepped" which consisted mainly of getting about a quart (at least it looked like that amount) of antibiotic through the IV and the surgery area cleaned and cleaned real good.
About noon the doctor showed up and examined the area for the implant. After another hour or so I was wheeled off to the surgery area where I spent another 30 or 40 minutes being "dressed or draped" for the surgery. Sometime after I got in the surgery area I received some medication to make me relax so they said, but what it did was make take a nap in about a half-sleep mode. I vaguely remember being told they were injecting a local anesthetic into the area where the surgery would be performed so I would not feel the anything.

About 45 minutes later I was told, "okay Mr. Smith, we are through and your pacemaker is working just fine." I was wheeled back into a room where I had to wait for awhile to be sure I had no adverse reactions to any of the meds I had received. About 5 PM I was told I could go home. It is uncommon for the person to spend the first night in the hospital just as a precaution, but that depends on the dr.

I was not unexpectedly sore and my healing was no problem. I did have restricted use of my arm for a few days, the main thing being not to raise my elbow above my shoulder, or lift more than a few lbs. Each of us is different, therefore get slightly different instructions) with the arm on the side of the PM. I was not allowed to drive for about 24 hours and then for short distances for a week or so. All in all the pain is less than most dental surgery I have had, and since I was retired even with the first one, it did not interfere with any activates.

One last word, you will go home with your Drs best guess on PM settings. Most of the time these are good, but occasionally some people need to have those settings tweaked. If you think your PM is causing you a problem, if it is just that you think something is amiss, let your Dr know, otherwise he will have no way of know everything is not perfect.

Good Luck,

Smitty




multiple surgeries

by Tracey_E - 2013-04-06 08:04:08

As I said in the previous post, I've had 4 surgeries in 19 years. The first surgery isn't bad, subsequent ones are super easy. If I get an early appointment, I'm home fixing my own lunch. It's all scar tissue, they just pop out the old and put in the new.

thoughts

by Tracey_E - 2013-04-06 08:04:38

I think the cardiologist is a moron, get another one

NCS causes fainting from 2 causes, dropped bp and dropped/paused heart rate. The pm can help the second, not the first. Staying hydrated and eating more salt can help with bp but only a pm will help with the pauses.

If there is a fix, do it, imo. If the state finds out you are passing out, they will suspend your license. And you shouldn't be driving anyway right now. You've been very lucky so far, don't push it. No one wants a pm, and I can see why you'd be hesitant after the first dr's asinine opinions, but many people have cured their passing out by getting a pm. It's a simple surgery and there's a good chance it will fix your problems, at the very least improve them, but most of all it will guarantee your heart starts up again when it pauses.

If you have any questions about the surgery, recovery or living with a pm, please don't be shy. I got my first at 27, and 46 and on my 4th one now. I'm healthy and active, no one sees heart patient when they look at me.

questions

by Tracey_E - 2013-04-07 02:04:02

We've all been there, ask away! This can be hard to accept, don't beat yourself up if you're not instantly thrilled about it. Acceptance and emotional healing are as important as the physical recovery.

Thank you

by Deppygore - 2013-04-07 02:04:57

Thank you all for your advice. I will get the pacemaker regardless of the first doctor's comments. I looked him up on the Internet and he got bad reviews, so that explains a lot. Last night, my son woke up around 1am and had trouble getting back to sleep. When he woke up, I wasn't in the room with him (his big boy room is upstairs) and he was crying, "mommy gone." It hit me like a ton of bricks how sad it would be if mommy really was gone. So I will do whatever it takes to be here for him!
As it gets closer to surgery time, I may have more questions. But your posts have been very helpful and for now I'm just going to let it sink in. Thanks again for taking the time to help me out. :)

pm

by pcherry - 2013-04-07 12:04:07

get the pacemaker,,ditto every thing Smitty says

NCS and a PM

by jenny97 - 2013-04-09 10:04:31

As the others said, PMs can be most helpful in dealing with the low heart rate aspect of NCS, but there are some that can help with a blood pressure issue as well. Talk with your EP about what type of PM to get. To my knowledge, there is only one that is FDA approved for NCS/vasovagal syncope (although that could have changed more recently) - the Biotronik Evia, so you might want to talk to your doctor to make sure the PM you are getting is the best for your condition. (This assumes you are in the US - there may be others used in other countries.)

I don't have that PM yet as it came on the market just after my first replacement, but my EP won't implant anything else (unless there's something better), the next time around.

I also have NCS/VVS and my PM completely changed my life (once the settings were appropriate). I hadn't even realized how run-down I was from my condition before the surgery, but woke up re-energized. I hope you have the same immediate and positive effects.

All the best,

Jenny

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I had a pacemaker since 2002 and ever since then my life has been a total blessing.