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I can't do anything the easy way, can I? :( Last night, right after the EP left, my LV lead started causing my diaphragm to spasm with every beat. And I'm not talking a little hiccup, I mean it was making my whole body quake and even the bed was shaking! :eek: We called in the nurse, who promptly freaked out, making me panic way more than necessary. Fortunately she called in the nurse supervisor who calmed us all down, explaining what it was (exactly what Nathan and I had suspected to begin with). They paged the EP, who called in a Medtronics tech to come play with my settings and see if he could get it to stop. He couldn't. :( So he turned off the LV lead (fortunately I do have two ventricular leads) just to stop the shaking until the EP can figure out what to do. This morning they took me down (at 5 AM!) to get a chest x-ray so the can see if the lead somehow shifted. If it did (Lord, I hope not!) it may require yet another surgery to fix. :( The problem is, my local EP does not feel comfortable messing with my ventricular leads, which may mean I'll be going to MN after all. :( :( :( Please pray that the lead has not shifted and that they will be able to solve this quickly and easily today! As of right now, my release has been postponed until they figure this out. :(
 
Oh, Niki, I'm sorry! You just can't seem to get a break, can you?
We'll keep our fingers crossed for you.
 
Gnusgal said:
I can't do anything the easy way, can I? :( Last night, right after the EP left, my LV lead started causing my diaphragm to spasm with every beat. And I'm not talking a little hiccup, I mean it was making my whole body quake and even the bed was shaking! :eek: We called in the nurse, who promptly freaked out, making me panic way more than necessary. Fortunately she called in the nurse supervisor who calmed us all down, explaining what it was (exactly what Nathan and I had suspected to begin with). They paged the EP, who called in a Medtronics tech to come play with my settings and see if he could get it to stop. He couldn't. :( So he turned off the LV lead (fortunately I do have two ventricular leads) just to stop the shaking until the EP can figure out what to do. This morning they took me down (at 5 AM!) to get a chest x-ray so the can see if the lead somehow shifted. If it did (Lord, I hope not!) it may require yet another surgery to fix. :( The problem is, my local EP does not feel comfortable messing with my ventricular leads, which may mean I'll be going to MN after all. :( :( Please pray that the lead has not shifted and that they will be able to solve this quickly and easily today! As of right now, my release has been postponed until they figure this out. :(
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So, so sorry:( ... Do I need to swing out there and straighten you out?:D ... Got you in my prayers:)
 
Niki, hope you get news today and will be on your way home soon. You will be in thoughts today.
 
Prayers continue, Niki. I will anxiously await news later today and I hope that it is news that you are home!
 
Another Medtronics tech just left. They cannot program the device in such a way that the stimulation of my diaphragm stops and I still get capture from the lead. He is looking at the x-rays and it looks like the lead has moved. This is not the lead they just worked on. It's the one the Mayo re-did in May '07. It looks like yet another surgery is immanent. Just don't know when or where yet. For now I'm doing okay, they just don't want to leave me like this long term. Nathan and I have discussed it and think we can still work around the surrogacy stuff even if we have to go to MN. I will let you know what I find out later today. Thanks for the prayers.
 
Niki,
I'm so sorry that you are going through all of this.
FWIW, I think you just explained what the hell has been going on with Brian for the last year or so! His whole body moves with his heart beat. We have talked to the cardiologist about it, but he didn't have a clue. I don't think that we talked to the EP about it, but I am calling him as soon as I finish this post! So, once again, your problems have been very timely for what Brian is going through right now.

I really hope this doesn't interfere with your surrogacy plans. It sounds like you have worked really hard for this.
 
Ok, I have a question about the diaphragm spasm. Can you feel it? does it affect your breathing or swallowing or anything? Brian's makes his whole body move but doesn't seem to affect anything else.
 
briansmom said:
Ok, I have a question about the diaphragm spasm. Can you feel it? does it affect your breathing or swallowing or anything? Brian's makes his whole body move but doesn't seem to affect anything else.
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The spasm is more uncomfortable than anything else. It shakes my whole body and sometimes makes my breath catch. That's bout all. Hope you can figure out what's going on with Brian!
 
Gnusgal said:
The spasm is more uncomfortable than anything else. It shakes my whole body and sometimes makes my breath catch. That's bout all. Hope you can figure out what's going on with Brian!
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Niki do you feel otherwise unwell? At risk of alarming you are these spasms definitely caused by a pacing error? Rigors are one symptom of endocarditis. Uncontrolled twitching was one of my early indicators.

A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. It is an extreme reflex response which occurs for a variety of reasons. It should not be ignored as it is often a marker for significant and sometimes serious infections (most often bacterial). It is important to recognise the patient's description of a rigor, as the episode is unlikely to be witnessed outside hospital, and to be aware of the possible significance of this important symptom.
 
Bonzo Dog said:
Niki do you feel otherwise unwell? At risk of alarming you are these spasms definitely caused by a pacing error? Rigors are one symptom of endocarditis. Uncontrolled twitching was one of my early indicators.
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Oh, it's definitely the pacer. When they turn off that lead the spasm goes away completely. Also, the nurse practitioner came through a little while ago and showed us my x-rays from Friday, yesterday, and this morning. The LV lead has definitely moved. Now the question remains... what will we do about it?

Thanks, Bonzo, for your concern. Endocarditis is certainly the LAST thing I need! :eek:
 
Gnusgal said:
Oh, it's definitely the pacer. When they turn off that lead the spasm goes away completely. Also, the nurse practitioner came through a little while ago and showed us my x-rays from Friday, yesterday, and this morning. The LV lead has definitely moved. Now the question remains... what will we do about it?

Thanks, Bonzo, for your concern. Endocarditis is certainly the LAST thing I need! :eek:
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:D :D :D Phew, relief all round then. :)
 
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