It is coming....

I am scheduled for PM implant on March 11. Are there others out there with Malignant Vasovagal Syncope, Mixed Type? If so, how has the PM worked out for you? My other option is drugs as an intervention...what do folks think who have gotten the PM? I have had to have CPR in the past and so....still I'm in denial that this is absolutely necessary.

My asystole on tilt was over 30 seconds. Long, right? Even with the PM I will still need Midodrine. Is anyone else on this type plan? I'm only 44 and all the replacements scare me.

Thoughts?

13 Comments

it's ok

by Tracey_E - 2009-02-21 09:02:50

Uh, yeah, thirty seconds is long!!!! :o)

I'm no expert but if you've had cpr, then I would think it's absolutely necessary. You don't want to go into cardiac arrest and die while experimenting with drug regimens to see if it'll work. With a pm, you have a guarantee that your heart will never pause or drop to a rate too low to keep you from passing out. Pretty good insurance policy!

I don't have the same problem so I can't give you any answers there but I am 42 and have had a pm for 15 yrs now so I can tell you all about replacements. I've had 3 now, nothing to it! The first surgery is the worst because you get the leads. After that, as long as the leads are working (I'm still on my first set) they leave them alone and only change the battery out. I'm not saying the first surgery is bad because it's not! But we do have restrictions on us when we have new leads. You can't raise your left arm above your shoulder or lift more than 5 lbs for 6 weeks. I found the soreness and pain to be minimal, I never took more than Tylenol after I got home from the hospital. Replacements are easy because they leave the leads alone, they go in the same place and use the same pocket so it's all scar tissue.

If you have any questions about recovery or living with a pm, please ask away! It's really not a big deal. I rarely give mine a thought and I feel terrific. I hike, ski, work out, roller blade. Most people don't have a clue I have it- I look like all the other women at the gym and moms at the pta meeting.

Oh! Thank you!

by Sandee - 2009-02-21 10:02:15

Tracey,

Thank you! I do have questions. I was thinking that I'd take off 5 days from work. Will that be enough? I keep hearing that I won't be able to drive and am trying to arrange for that. I work in differing locations each day so it is a challenge. Some days are pretty relaxed physically, but other days require me to lift materials nearing 60lbs. I see that I won't be able to accomplish that but have coworkers willing to share the burden.

How long would you take off? I'm really worried about work. I do have time to take, but I have a high case load and that would really pile up. Thoughts appreciated!

I'm so glad I found you!

Sandee

Long Pauses..Me too~

by rozybud - 2009-02-21 10:02:31

I'm 42 and just had pm surgery 3 wks ago. I had been waking up once a month or so from a deep sleep feeling "wierd", anxious, nausea, lightheaded etc...for 2 years! Until 3 wknds ago, I passed out after getting up and went to hospital, they recorded a 8 second, 15 second and 20 second pause in one day.

I'm sure I've had longer pauses w/ out them being recorded because of the symptoms afterwards being so fatigued and vomiting.
It was a shock to find out I was having pauses then to find out in one day I was having pm surgery the next day! You will be very relieved once its over. I only took Advil afterwards and the left side was sore for a few days.
The dr. did not tell me the "name" or diagnoisis of what I have...but sounds similiar to yours..Do you mind explaining what Malignant Vasovagal Syncope is??

work

by Tracey_E - 2009-02-21 10:02:47

You'll have to ask your doctor about driving, they're all different. My doctor never told me not to drive so I was back on the road within a week. Some are told not to drive for several weeks. You will be ok to drive, the only risk is if you have to suddenly swerve to avoid an accident you could possibly dislodge a lead.

Lifting 60 lbs will be out of the question for 6 weeks. Sorry! The leads need time to settle in to place and before that time you can yank them out. Not a good thing!

As long as the doctor is ok with you driving, 5 days off work should be plenty. Just as an extra cushion, you could take 6 and get it done on a Friday so you have two weekends also. You should be fine in a week but too much time off is better than overdoing it, ya know?

I was a bit sore the first few days but was full of energy and taking walks from the time I got home from the hospital. Not everyone feels that good but if you're otherwise in good health you may also. I found the biggest challenge to be washing and fixing my hair! Hard to do one handed. And I didn't even try to wear a bra until some of the soreness went away. It only hurt (for me, at least) when I stretched or twisted the wrong way.

Other tips...
wear a top that buttons down the front to the hospital because you won't want to be pulling anything over your head right away.

try sleeping hugging a pillow. I found that the weight of my breast pulled on the stitches when I slept, the pillow helped that as well as kept me from rolling onto my side.

know going into it that the settings they send us home with are not always what's right for young and otherwise healthy people. If you feel weird at all the first few days, call and ask to be checked. It's really easy to adjust the settings but they won't know it needs it unless you tell them

when you have it adjusted, ask for a copy of the report. A few of the guys here can make sense of all the mumbojumbo on it.

talk to your surgeon about location. Some put it high and just under the skin and it's pretty noticeable. They can bury it deeper and/or lower if you ask them so it's less noticeable with scoop necked tops and doesn't rub with the seat belt or if you carry a backpack. Or you can go all crazy like I did and bury it completely behind the breast. I have no visible lumps or scars. If you want to know more, just ask.

Syncope

by renee14150 - 2009-02-22 02:02:14

I also have vasovagal syncope. I have been passing out since I was 7 years old. I have been on numerous medications for the past 10 years. I just received my PM on 2/10/09. I am still healing but it was overall a very "easy" surgery. My last recorded episode was a 23 second pause followed by a 16 second pause. I am only 31 so I will have numerous battery changes however people with syncope do not use their pacers everyday so I was told my battery will last well over the 5 years maybe even up to 10 years if I am lucky! So good luck

What it is...

by Sandee - 2009-02-22 03:02:28

Malignant vasovagal syncope is fainting that is severe, basically. In most faints the heart slows and the blood pressure drops.

To be malignant it must treaten your well being directly or indirectly, like falling from a "drop faint".

For me my triggers are fear, heat, pain and illness. My pauses were "the most profound I've seen" according to my cardiologist (21 years of practice). I was well over 30 seconds in asystole. Even with medication I managed a pause of over 10 seconds. Atropine alone won't fix my problem, that is how they know that vessel dialation plays a role.

The medical community thinks that folks like me would "restart" on their own, but I note that they never risk it in a clinical setting and always revive the MVS people.

In my type, mixed type, the parasympathetic system is the start of the problem. My vagus nerve is "hypertoned" (too strong) and stops my heart. In turn, the sympathetic system is activated and I get hypotension (low blood pressure). In short my heart stops and my blood vessels dialate so much that I have no blood pressure. Asystole is the result, a complete electrical shut down in the heart and circulation. It includes circulation to the brain and then I have a convulsion for "cerebral profusion" (no blood in the brain). Boy does that do a number on memory!

Tracey is so nice!

by Sandee - 2009-02-22 03:02:39

Tracey,
Thanks for telling me things I need to know. I am already scheduled for a Wednesday surgery (03/11). I'm an early morning schedule. At 7 AM I'm admitted and meet with the anestesialogist because there are some real problems in caring for malignant vasovagal syncope because some sedation drugs can cause it occur.

My cardiologist "assigned" me to the head of anaesthesia for the rest of my life for all surgeries (or until the anestesialogist retires I guess)! He informed me he'd already arranged it and discussed my case with him. I really did appreciate it! Wow, nice of him to think of me.

After that comes preparation and surgery. I'll be kept overnight because of the anaesthesia situation. I am going to take more time based on what you wrote. I think this lead situation is too important to risk. I work with children who have special needs, doing assessments and designing interventions. At times I work with kids who are not easy to predict and that could be a disaster.

Sandee

Welcome!

by abreaux - 2009-02-22 04:02:02

Hi Sandee,

I had a couple episodes of syncope due to AV block, so a little different from yoru diagnosis. They tried and tried to make me pass out on the tilt table, but couldn't even get my pulse or BP to move.

I work at a desk job when I'm not on the road. I've been off business travel ever since I passed out while driving in December. I got my PM at the end of January, was off work 3 days, and back at e-mail right after that. I start traveling again at the beginning of March, when I'll be 6 weeks post-implant. I'm not driving long distances right now, and stayed with my parents the first few weeks after surgery so that I wasn't tempted.

I totally agree with TraceyE about hugging a pillow at night. That has really helped me with my chest shifting and not pulling on the incision quite as much. I had my PM implanted on my left side, and have slept on my right ever since, though last night for the first time I slept on my left side without any pain or smushing.

I was very careful with my left arm the first 4 weeks, am getting a little more relaxed about it now, but still not lifting heavy things with it or stretching it up over my head or behind my back. I've only freaked myself out a couple times, thinking I had done something to screw up my leads. The worst was the day my brother took me home to Atlanta from my parents' house in Alabama. The car and seatbelt for several hours really jostled me and made me think I had messed it up. On top of that I had been goig on autopilot the day before and had forgotten and liften my Mom's wheelchair in and out of the trunk of the car. The next day, they did a phone check of the PM, and all was fine. I've calmed down about it now, and really am able to forget it's in there more of the time.

It's been a bit of an adjustment, but a lot less of a lifestyle changer than wondering if I was going to pass out every time I got in the car.

I think anticipation is the scariest part of it all - you're gonna do great, especially since you already found this group!

Hugs and kisses,
A-M

I needed the hugs and kisses!

by Sandee - 2009-02-22 07:02:30

Thanks A-M! That is really good information.

Tracey,
I read your comments about placement. I saw in a few other spots that folks had placement "under the breast". I like that idea. Is it common everywhere that Cardiologists will do it that way? I'd already eaten an hour-and-a-half of my MD's time when we got around to scheduling the PM implant. Most of his staff had gone home and I felt a little bad questioning him as much as I had. I wasn't ready with PM questions at that point.

Now I want to ask about pacing patterns, DDD or DDI, placement and to request that I have the smallest model out there.

I have the luck of time since I am on medication management until implant. What would you ask for as far as "the best" outcome for comfort? I am vain and would like for it to be unnoticed if possible. I'm smallish framed, 5'2 yet I have enough bust to "hide" it - LOL!

Sandee

Thank you Sandee!

by rozybud - 2009-02-22 07:02:41

Thanks for exlaining the condition...my doctors have only told me I have very long heart pauses. No official name to it. Still not sure what its called-
I'm looking forward to getting to my forth week and getting more comfortable knowing I have this everyday.

You'll do fine! Just listen to your body, when it tells you your tired...nap!
Good Luck
Rosie

yes

by cqmccann - 2009-02-22 11:02:58

Yes, I think that the PM is a great idea due to the CPR issue. I was 38 when I had CPR and I got my PM implanted when I was 39 in April of last year. I just turned 40 and I am glad I was here to have that birthday. I had dysautonomia (vasovagal syncope) from a virus I contracted. My heartrate was 30 at rest. I have felt great ever since my PM was implanted. I have not had another syncopal episode since 4/9/2008 when it was put in. I was having near syncope every 2-3 months prior to that. I tried Midodrine but it did not work for me. I am on Metoprolol because I have runs on SVT since my virus as well. The PM takes care of the too slow and the Metoprolol takes are of the too fast. I am back at work full time as a firefighter. It is a big decision to get the PM but my experience has been a very positive one. Best of luck in your decision.

submammary placement

by Tracey_E - 2009-02-23 07:02:27

Most doctors have not done it this way. It's different but not that complicated and they are usually willing to try it. The main reason many haven't done it is simply because it never comes up- most patients are older and/or never ask. I've talked to a few women (here, who talked to me like you are before their surgery) who's doctor warned them it would make mammograms or nursing difficult but I never had a problem with either one. Some chose to do it anyway, some went the traditional way.

My doctor sort of experimented with me, lol. When I got my first pm I was 27, small boned and very underweight. I didn't know enough at the time to ask but my doctor was concerned about leaving it ugly (his words, not mine!). He didn't want to experiment on his own so he called in a plastic surgeon. They did some research and only found a few cases of submammary implants so they warned me they were mostly making it up as they went along. That was 1993. It's still not common but it's not as rare as it was.

I have an itty bitty scar a few inches under my collarbone where they put in the leads. It's off to the side enough that you can only see if if I wear a low cut top, even then you don't really see it because it's so small and thin. The pm itself went in from the side, about where the underwire hits. The pm itself is behind/under the breast tissue. The extra soreness comes from tunneling through to connect the leads to the pm.

One of the ladies here got hers similar to mine but her surgeon didn't put it as low, he did it off to the side from the usual spot but went in more from the top of the breast rather than the side, and he did the leads from the same incision.

Short term, this is the harder way to do it because it's more digging. It's not awful, but healing will take longer than if they put it in the usual spot. You can't do much with your left arm for 6 weeks anyway, so I didn't think it was a problem. I never took anything stronger than Tylenol after I was released but it was probably 2 months before I comfortably could wear an underwire (wore tank tops with built in shelf bras and jog bras until then) and do my full workout at the gym.

Long term, I absolutely love it and feel it was worth any discomfort short term. I can barely feel the edges of it if I poke around looking for it- no lumps, no visible scars. I've done long hikes with a heavy backpack and no problems. I do a full range of upper body weight exercises. I breastfed two babies. The only time I even know it's there is when I'm pms, it sort of tugs. Not pain, just an awareness of it. I'm bad about writing down dates so I consider this a good thing, lol, it's my head up.

I don't have the very smallest one available because it would also have the shortest battery life, but I don't have the biggest either. I guess you could say it's smallish. :o) (my smarta$$ sister suggested they could give me two big batteries on each side, I'd be a DD and last 40 yrs LOL)

Never, ever feel bad about taking up their time with questions! It's better to be comfortable with this going in than let them rush you out the door and be nervous of the unknown. Knowing is always better than wondering, and it sounds like you have doctor who understands that.

Scared

by Sandee - 2009-02-27 11:02:17

I wish the date would come so I would stop reading up on all of this. I just need to get in there and get it over with.

Today I talked with the nurse, wondering, "Is this really necessary?" She was sweet, but I still want to talk with the doctor some more. Once it is done I can't go back, right?

I have read and read, but they just don't see that many cases like mine. I read one full journal on mine and it said there isn't really any support for medications or pacing...that most doctors do pacing for situations like mine, but there isn't much to back it up. I think that is why my doctor isn't rushing into it.

I don't have slow heartbeat day-to-day and rarely have syncope. When I do, however, it is really bad.

You all know I'll end up doing this, but boy am I scared right now.

You know you're wired when...

You have an excuse for being a couch potato.

Member Quotes

I'm 44, active and have had my device for two years. I love it as I can run again and enjoy working out without feeling like I'm an old man.