ICD Fitted 8 Hours Ago - Stomach Spasms

Tell the Doctor....

by Grateful Heart - 2018-11-30 21:30:00

Before you leave.  It may be pacing your diaphragm which is a problem.

Grateful Heart

ICD

by Stan Da Man - 2018-11-30 21:44:56

Can they do that at the hospital? What would that involve? Thank you for your help. 

ICD

by Grateful Heart - 2018-11-30 21:49:43

From what I understand from your post, you are still in the hospital.  Even if not, they can make an adjustment to your settings.  If that does not work, they may have to revise your lead.

Take it a step at a time.

Grateful Heart

ICD

by Stan Da Man - 2018-11-30 21:52:21

Thank you Grateful Heart, I'm just freaking out now completely and want to rip this thing out of me. My stomach keeps jolting and there is no chance of me getting any sleep tonight.

I thought the doctors were supposed to be experts! :(

To Start With

by Grateful Heart - 2018-11-30 21:59:48

They can lower the voltage on your device.  That may help.

Grateful Heart

ICD

by Stan Da Man - 2018-11-30 22:01:10

Hi Robin1,

It was 1am when I asked for the doctor and now 2am with still no sign so I asked for them again. There is only one doctor tonight on the night shift who has something more important than my case on right now.

To be honest, I want to just rip the device out. I feel trapped in my own body and like I can't do anything. All the nurses on call don't even seem to care. 

ICD

by Stan Da Man - 2018-11-30 22:02:55

Grateful Heart,

Could lowering the voltage be done without the need for another op. I'm not quite sure how any of this works. 

Yes Indeed

by Grateful Heart - 2018-11-30 22:07:06

There are so many parameters to our devices, many, many settings.   

Surgeries are few and far between....only if extremely necessary.

Grateful Heart

ICD

by Stan Da Man - 2018-11-30 22:16:08

I understand it's here to help me but right now it's not - I feel this jolt way more than any heart palpitations I've had. I've never had a palpitation wake me up before or not allow me to go to sleep.

I was hesitant about getting this thing installed and now I know why - how am I ever supposed to sleep again? This is one of the worst days of my life.

Ugh

by Zanneblake - 2018-12-01 00:14:09

Tell the EP that put the pm in. It sounds like it is hitting your diaphramic nerve. 

Hang in there.  Hope they can turn the voltage down. It helped for me. 

ICD

by Stan Da Man - 2018-12-01 03:31:06

Thanks for your advice everyone. A doctor finally saw me last night but said a trapped nerve was the issue which it definitely wasn't. A trapped nerve that is still joulting me awake after 12 hours in line with my heart beat?

I told him this started as soon as I came out of surgery to which he said it may be a coincidence... I said this is definitely not a coincidence. Basically, I have decided that I will not be leaving this hospital until they sort my spasm/twitching problem. Their argument "I'm not in pain" is countered with mine of "I wasn't before and now my quality of life has diminished".

Will update as soon as I know what's going on. 

Standing up, sitting down or laying down?

by Stan Da Man - 2018-12-01 04:03:25

Who has had these spasms before and felt them no matter what position they are in? Standing up I don't really feel them. Sitting or laying down is when they become really prominent. 

Stan

by IAN MC - 2018-12-01 06:14:38

I too am in the UK.   I suspect one of your biggest problems is that all of this is happening late Friday and  at the weekend when there aren't too many cardiology specialists around .  I was admitted as an emergency just before a 3 day Bank Holiday weekend so I feel for you !  Next time I need any sort of op I will try to plan it early in the week !!

Are you in a general ward or a cardiology ward ?  Has anyone who understands the problem seen you yet. Have you escaped or are you still in hospital ?? 

It may be a relatively easy fix once you get to see the right person. It definitely will be sorted out. Let us know how you get on.

Best of luck

Ian

Ian

by Stan Da Man - 2018-12-01 07:57:07

I am still in the cardiology ward - my op was done last thing on a Friday so as a result, all the 'experts' have gone home until Monday. No one really knows what they're doing with my case as a result.

I've just had X-rays done which are being sent off to the on call consultant I believe. The registrar is supposed to be seeing me within the next hour. I was also told the technician who deals with all the ICD units is working today as well. Looks like my best bet is to wait until Monday when people aren't guessing anymore and might be able to fix my problem. 

Roll on Monday !

by IAN MC - 2018-12-01 08:31:10

It certainly sounds as though your new implanted friend is somehow sending electrical impulses to your diaphragm and persuading it to contract .

The technician has a few tricks up his sleeve to cure the problem . One is to reduce the voltage but there are other things he can try. None of these are invasive i.e. they don't involve the cutting of  flesh, they are all done by an external pad on your chest which is connected to a computer.

In exceptional cases the lead may need re-positioning.

I can think of better ways to spend the weekend !

Cheers

Ian

Maybe an end to the nightmare?

by Stan Da Man - 2018-12-01 10:20:21

X-rays came back all clear. I spoke with the consultant who thinks it's exactly what you described above Ian. Now waiting for technician to arrive to "fix" the issue. How will I know if they have fixed the jolting or not?

Self tests.....

by BOBTHOM - 2018-12-01 10:53:44

Make sure they test the devices self test settings.  Each device runs periodic tests, daily, every couple of hours, hourly, all depends on the device.  Some they can turn off, some they can schedule at a different time of day, and they may be able to change the voltage on that as well, not sure, but definately a question to ask.   Good luck!

So...

by Stan Da Man - 2018-12-01 12:58:49

Technician came out. Turned off the self test feature. Changed the settings to 1.5V at 50bpm. Thought we were all hunky dory, 2 hours later and no diaphragm jolts of any kind. Sat down in a chair a bit after that... 4 jolts in 2 minutes! Now waiting on the technician to come back out. How low does it need to go to not feel a jolt?!

Well...

by Stan Da Man - 2018-12-01 15:52:39

That's the lowest, safest setting according to the technician for someone like me with non-sustained VT. Left the device as it was and see how I get on overnight. My only other option is to turn off the wire at the top of my heart but apparently this wouldn't be helpful if I were to have a cardiac episode? 

Diaphragm Twitch

by Stan Da Man - 2018-12-07 05:45:16

Does anyone else get a twitch in their diaphragm when they sit at a particular angle? I have found mine twitching randomly in the week I have had it installed. It's only when seated, never standing up or lying down - any ideas?