DPS problem

[AzBabs]

Hi, I received my DPS in April. All was fine , had an adjustment in May. Settings on low, just felt slight tingle. In June I reached with my left arm, across my body to close the sliding Van door that was to my right and slightly behind me. I felt a horrible pulling sharp pain in the area between the wire holder and my diaphragm. It really hurt for about 5 days. I was out of the state so emailed the clinic and was advised it was fine and keep using it.

Shortly after that when I would use the DPS, I would still feel the tingle. I would also get severe muscle spasms across the top of my stomach ( confirmed by neurologist) causing me to have a horrible shutter feeling.

It is still on low (AAAA) and I can't stand to use it. Could I have possibly pulled a probe loose and it landed on my other muscles? It is still on the original settings from the hospital. I had no problems using it until I pulled the door shut.

Could placement be checked by some sort of X-ray or scan?

I'm only the 5th PAL to get the DPS at my clinic and the Dr.s are no help. They say "I don't know". This is driving me crazy! Neuro even said the shutter isn't from my diaphragm as he could see my upper muscles ripple with the shutter.

Any ideas anyone?

Barbara

 

[Nikki J]

Have you raised the level of your concern to the max level with your team? Have you asked them if they don't know to contact Neurx the pacemaker people and ask them? I would think they could image the area but unless something is way out of place would they be able to tell if things were ok? As you said it is new territory for them. But I think I would ask them to give it a try! Did you talk to the surgeon who implanted it too? So sorry! Hope they figure it out!

 

[patrick123]

Speak with your surgeon who implanted it. Sometimes the ground connection can cause a sharp pain.

 

[Graybeard]

I have applied to get in the DPS trial. Can you get the DPS outside of the trial?

 

[Nikki J]

Graybeard, yes you can. You may have to fight your insurance company. You need to talk to your neuro and pulmo if you have one. You need to find out if there is a chance you get sorted into the conventional treatment arm of a trial. That means no dps. If you are not willing to risk that and want a dps then you need to get your physicians on board and make sure they are monitoring your respiratory status and if you are lucky enough to be at a forward thinking center also monitoring your diaphragm with ultrasound. You don't want to miss your window and if you need insurance ok you want to start as early as possible. Some people who wanted dps could not have it because it was too late

 

[Jeff Long]

In June I reached with my left arm, across my body to close the sliding Van door that was to my right and slightly behind me. I felt a horrible pulling sharp pain in the area between the wire holder and my diaphragm. It really hurt for about 5 days.

Shortly after that when I would use the DPS, I would still feel the tingle. I would also get severe muscle spasms across the top of my stomach ( confirmed by neurologist) causing me to have a horrible shutter feeling.


Could placement be checked by some sort of X-ray or scan?

Barbara,
I got my DPS in June 2013 and several days later had a similar experience when reaching for the remote. (Couldn't be something cool like saving a falling child or some other good deed!)
I also noticed that the grounding wire, which had been no different than the others sticking out of my side, was now considerably longer! Also, at first the "tingling" I had when pacing was very low in my abdomen, but after the grounding wire pulled loose it moved much higher. Still works, although I now have 'excess' wiring to tuck in.

The wires should be easy enough to scan or x-ray, worth asking the thoracic surgeon who did the implant.

Also, I talked with the Synapse rep about another issue while in DC for Advocacy week. He gave me the number for the office of the doctor in Cleveland (Dr. Onders) who designed this system and I was able to call and talk to the nurses there. Very nice and helpful, and had no issue that I was not their patient. May be worth a phone call to them.
Best of luck,
Jeff

 

[Jeff Long]

Barbara,
Posted a reply but it went to moderation.
I post a lot of edgy stuff that breezes through and the one helpful post I make gets moderated... the irony is not lost on me!

 

[bigmark1954]

Barbara,
Posted a reply but it went to moderation.
I post a lot of edgy stuff that breezes through and the one helpful post I make gets moderated... the irony is not lost on me!

Welcome to my world........we are corrupting the world one post at a time

 

[Jeff Long]

Welcome to my world........we are corrupting the world one post at a time

Personally, I think we gotta pick up the pace! :twisted:

 

[GregK]

Patience lads. Corruption, by it's very nature, is a slow process!

 

[MaxEidswick]

>Personally, I think we gotta pick up the pace!

Ditto that!

 

[AzBabs]

How do you know which wire is the ground wire? I have one wire that is about an inch longer than the others. have no idea how it got pulled. Happened about 2 weeks after put in and the pacing felt good then. Problem started after the "Pull". I'm non verbal, my husband makes the calls and getting a reply from the surgeon is next to impossible. Programming is done by neurologist.