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Permanent boston in and have issues and questions

I had the permanent Boston mri ok implant put in dec 22 2017. The dr put in the paddles. Questions that I have are my battery is in my left rear hip at belt line when I wear my pants at normal height they catch on the battery. Two days after getting discharged from hospital I noticed the battery “falling” out of place, meaning that it lays horizontal when I get up out of a chair, bed or whatever. I’ve alread had it lay horizontal without my knowledge and sit in a chair and have it jam me in the back. The battery has what I call been doing cartwheels meaning it’s been rotating and has done what I know of al least 6 full rotations. It is very sore as bad as surgery date if not worse now it has a burning  stinging feeling. When I step down off a step or curb I feel it falling and moving followed by a sharp shooting pain in battery area. I cannot even use the stim due to not being able to program the stimulation correctly it stays behind my rib cage or in my legs, when it’s moved to be minimal in the leg it’s full strength in my rib cage same with rib when  we pull it out of rib it’s full strength in leg. There’s no happy point. I’m afraid if I let the leads scar in I’ll be stuck with those options which for me are not gonna work. All my pain is in the lower back. When the stimulation in in the legs my legs don’t work very well when it’s in the rib cage I begin feeling horrible. I’ve contacted Boston scientific and they have been no help other than we’ll contact your rep and some one will get back to you. My dr seems to not be bothered at all and tells me that it’s ok if it moves and rotates, he says to deal with the increased pain and learn to live with a rotating battery. I’m ready to have the unit removed due to lack of support from Boston and ignorance of the dr. Has anyone else had similar issues with a falling/loose battery? I’m worried of the current hot/stinging pain from the battery and the movement. 

Thanks for any info

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Comments

  • I am almost 5weeks post op. I told the rep that I was pretty sure my battery pack had moved. It is def not where it was. She told me impossible cause it was sutured in and that it’s just the tissues settling. I don’t believe her. You are right that this company doesn’t seem to care about issues. I have other things happening and I’m told it’s normal. Having burning and stabbing pains, extreme fatigue, nausea and blurred vision does not seem normal to me 5 weeks out. 

  • So I had the battery moved and the surgeon broke the leads to the paddle. Only one side was working. After numerous complains the dr says it’s ok let’s see if we can learn to live with it. Weeks went by and unit was useless. So the dr decided to now replace the entire unit and leads mid feb. Fast forward to today and now after getting cut up multiple times the unit feels as if it turns on and off by itself, the remote is 20 miles away at home. The stimulation is now stronger in my legs an cannot be moved anywhere else if it can be moved it’s in kidneys or sides of stomach. Now with side effects of nausea, blurred vision, dizziness and headaches as well. I’ve even developed hives from meds I’ve been taking for years with no side effects at all. Called Boston and all they do is put the responsibility on my rep who can only do so much. Their staff at Boston has no clue on what to do and is only there to forward your questions to your rep. They sold the product made their money and give you what I call a taillight guarantee. 

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  • @66mstgfsbk just so I understand - you got your permanent implant, then had the battery moved, then the doctor replaced the entire system? I can certainly understand your frustration. It's difficult to resolve because there are shared responsibilities between the doctor and the device rep with these systems. If possible you should schedule a joint visit with your surgeon and the device rep to determine the best path forward. 

    On a side note - I almost always carry my remote with me or in the car so I have access to it if I need to make adjustments or turn the device off

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