Thank you so much for your well wishes and your prayers, they really do mean a lot to me!
It sounds like your daughter and I have a lot in common. I have had this surgery done and revised several times due to leads slipping out of place, too much scar tissue building up causing me to loose the sensation of the stimulation, as well as numerous battery changes - some due to infection (I got that MRSA, antibiotic resistant staph), but most because in order to get any relief from the SCS I have to have all of the settings as high as they go which has caused me to go through a battery in as little as 2 months.
I have tried rounds leads, flat leads, surgical leads, non-rechargeable as well as rechargeable batteries, and although they did not have to make a new pocket this time, I have had that done several times, and they are running out of spots on my back to make new ones. The next time that becomes necessary, they may have to move it to my stomach. I have had a lot of people ask me why not just give up and I have had others accuse me of "enjoying surgery" - I know that there are some people in this world who probably do, but believe me I am not one of them - the pain I go through is bad enough, but the mental and emotional toll it takes on my husband and children each time is not something I would put them through unless I felt it was really necessary.
Does your daughter have an SCS now? If so, does she have the rechargeable battery? What does she think of it? I tried it, but I did not like it at all. The Medtronics rep. told me that I would only have to recharge it once every two weeks for about two hours and I'd be able to do it while I slept or I could strap it on with a belt and I could get up and move around do things. I don't know if there was something wrong with my unit or what, but it took 17 hours to recharge and I had to sit perfectly still so that the recharging unit was perfectly placed over the battery or it would not charge.
I went back to the non-rechargeable unit, but I still can not run the unit 24/7 the way I would like because as I said I kill a 5 -7 year battery in 2 months, so I have to save it for my worst days and turn it off as much as I can stand to. Doing that, I was able to prolong the battey life to about 6 months.
I see that your daughter has tried the intrathical pump too, but had to be taken out, did they ever try again? I, too, got an infection when mine was put in, but it didn't make it down to the unit. I had to have 2 months of IV antibiotics, but things were OK except that the doctor put it in way too deep. Instead of putting it just under the skin, he put it all the way down in my stomach and it was very difficult to fill, it would flip around, it was so free floating that I leaned over from a seated position to pick something up and it shot up and broke my rib! Eventually it became such a nusiance that I found a wonderful new doctor who moved it, and he has been my neurosurgeon ever since.
I'm sorry to go on for so long, but I just wanted to say one more thing - I really admire how you stick by your daughter. I know you will probably say that that is what any Mom would do, but I can tell you from experience that that is not always the case. Please remember to take care of yourself too, because you won't be able to care for her if you do not take care of you. If your daughter ever needs or wants someone to talk to that has a similar history to her own, I would be happy to chat with her.