Seven Months with BS SCS - A question please...


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Posted by nita6142 (4 posts)
May 07, 2014 10:00 AM

Has anyone or does anyone experience flu like symptoms caused by their SCS? Thank you.

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Posted by flygal (474 posts)
May 07, 2014 10:21 AM

I have but it is just allergies and bronchitis. How can you tell it is due to the SCS?
flygal

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Posted by nita6142 (4 posts)
May 08, 2014 7:23 PM

Thank you for your response. When I shut off the remote to charge myself, the nausea subsides. I realized this was happening in January. Now, unfortunately, I keep the stimulation levels low. I actually have had to shut off the device completely when these flu like symptoms are too much. Example: yesterday at 4 a.m. CRPS flareup, and I increased the level of the program I was currently on, just enough to hopefully relieve burning and pain. (Which it did, thankfully) By 7:30 a.m I was feeling so nauseous, dizzy, etc I decided to shut the device off. (Grateful nausea relief) Is this common? Is the SCS known to cause this in some patients?

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Posted by flygal (474 posts)
May 08, 2014 8:58 PM

That would be a great question for your rep. Is your stimulation in your abdomen? I would wonder if perhaps it is stimulating one of the nerves to your stomach?
Good luck; if you need a med for the nausea, zofran OTD (dissolves under your tongue) works fast.
flygal

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Posted by nita6142 (4 posts)
May 08, 2014 9:44 PM

Stimulation programmed for entire right arm and hand, left forearm to top of left hand, and some neck area. I have been eating Tums 750mg which help a bit. I have spoken with 2 reps here that I work with. (They do know of a patient with similiar symptoms as mine). ALSO, called BS directly, a rep called me back. She could not help me and said she would have an "engineer" call me. I specifically asked that this phone call not be returned on that following business day as i had a doctor's appointment...of course, the call was returned from "engineer" while I was with the doctor! That week, 3 more reps called me, but they could not answer my question. EVERY BS rep I have worked with in person has been outstanding. But this question requires someone else from BS. During that week, I called the Bs main number twice and left a message each time for that "engineer" as his message gave the toll free number only. I pretty much spent six business days waiting in my room for the "engineer" to call me again. I could have called back, I know. But I quite frankly have no fight left in me. Current PM Doctor does not believe device is causing my symptoms. (He is not the the Doctor who did implant surgery) I quite simply do not agree with him. That is why I decided to write on your forum, to ask group of people who actually have this device. I apologize for my rambling...I was hoping not to do exactly what I have done!

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Posted by flygal (474 posts)
May 08, 2014 5:26 AM

Nita
No reason to apologize. I totally get your vegging out right now. If you live with someone, perhaps that person could call the 'engineer' again. Or when you get up the strength and live alone call when you can. Is there a person who can advocate for you? It is very hard to go through this alone.
flygal

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Posted by nita6142 (4 posts)
May 08, 2014 7:09 AM

I am alone, and I will not be trying to call that person again. My PM&R doctor is aware of all these details. I had tried searching using different key words to find older posts hoping maybe to find a discussion on this topic. I did not find any. Flygal, you are always so kind and extremely helpful to everyone.

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Posted by ggerbrandt (142 posts)
May 09, 2014 11:41 PM

Nita... What state are you living? I am in CA, and Flygal is in TX. Here in CA, I call customer service, and the response is really quick. I am surprised by this. Your doc really needs to get on this. The doc is the one who did the placing. Hope this helps. Gary

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Posted by nita6142 (4 posts)
May 09, 2014 4:43 AM

Thank you, Gary. I am also in CA. I received a call this morning from a Boston Scientific Tech Support Engineer. He was very knowledgeable, patient, and generous with his time. I feel satisfied with our conversation.

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Posted by flygal (474 posts)
May 09, 2014 6:47 AM

Nita,

I am so glad you got to talk with an engineer. Does the engineer have any insight as to the cause of your nausea?

Thank you for your generous note as well.

flygal

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