Just checking in...
Please bear with me, I am a little past tired, and have no patience right now. So I will keep this short, and please do not read it as anything having to do with any of you all.
Thanks Tina for the update above. This is hard times. The NS repositioned the lead AGAIN in a different place than promised, AND did not loosen the wire going down my neck. So I have been deep in the land of unhappy blue funk.
So, I sat with the rep, and we played with the settings. Good news. We are having good results regarding the lead at my nose - I am now able to wear glasses. I am still messing with it to see if it is helping any with pain. Not so sure. So, a bit of good news.
Bad news is, the wire to the unit is miserably tight. When I tilt my head slightly to the left, it lifts the scar, the unit, and the tissue around it, quite visibly. It pulls on the leads in my face. I was sitting waiting to speak to the NS's PA, and my SIL pointed out that I hold my head to the right. Tipped. I had not noticed it, but I had been having horrible neck spasms. Now it all makes sense. When I think about it and do hold my head straight up, it is taut. I mean like a guitar string. This was one of the things to be fixed at the last surgery - BUT THEY ONLY MADE IT WORSE. So before I saw the rep, I was thinking that I was 0 for 2 regarding results - hence the dark dark mood. I just couldn't talk to anyone.
SO.....BIG QUESTION....were any of you told that there would be a loop of extra wire put in? I had a feeling that he didn't do this. I convinced the PA to send me for an XRay, and there was NO LOOP - I had the techs show them to me.
I was told by others with these systems that this was done, so if you could all help me, were you told that there is a 1"-2" extra loop of wire put in?
I would be so grateful if others could share this info with me. Last bit of good news. I showed the PA what the wire was doing, and he shoe-horned me in for surgery 4/25/11 - next week. This is for a doctor w/ a 3 month waiting list. So I think now that they know it's really wrong. I pray so, at least.
Wish me well for Monday.
Lily