So, since I didn't originally post about it here, in case you haven't read or heard, I have an infection from my occipital and supraorbital nerve stimulator implant. I've actually had this infection since the beginning, and we hit it with a number of antibiotics, but it kept coming back in various ways. Finally in early August while I was on vacation, it came back in the form of a red slimy abscess on the back of my neck that drains all kinds of crapola. So, I stopped working as of 8/6 (because you can't have a draining infection around sick babies), and I've been on antibiotics ever since - hoping that a 6 week course of amoxicillin would kill the infection and thus save the stimulator. Another recipient of the same procedure had to have his entire stim removed due to a MRSA infection, and he recently had a new one implanted. While the infection rate for neurosurgical procedures is 5-8%, apparently it is somewhat higher for stimulators because of the implanted plastic.
Bacteria stick to plastic like white on rice, apparently...
So I have been calling the neurosurgeon's office this week to let them know the abscess is completely unchanged, despite over 2 weeks on the amoxicillin and over 3 weeks on antibiotics in general for this thing. The nurse contacted the surgeon, and now he wants to bring me into the OR on 9/9/08 to do a surgical incision & drainage (I&D) to try to clean out the infection and save the stim. Because the infection appears to be localised to my neck, this might actually save it. Previously he said that wash outs never work, and wouldn't work for a plastic implant, so it wasn't worth trying. I'm not entirely sure what has made him change his mind, but I will certainly be speaking with him prior to the procedure! I'm assuming that his thinking is that the infection is located in the skin and hasn't tracked down the implant. If he finds that the infection has spread down the implant, then the entire thing will be removed during the same surgery.
That would suck.
But if that happens, then I wait 3 months and can get a new stimulator implanted if I want. Which I would want, because this is helping. I don't regret this surgery because it has been a huge help for me, despite any complications. I would still recommend it for people who were in the same place I was in, and similar places, if they so choose to go that route. I would definitely note that infection is a risk, but there is a certain degree of risk connected to most of the things we try, especially in intractable cases. (Note: Most - I am not interested in getting into an argument on whether or not the alternatives have risk. This is not the place for debate about that.) Doesn't mean that just because one person happened to experience it that everyone will. There have been plenty of people implanted with stimulators that did not get an infection...
All that aside...that's the plan. The flip side of this is that I am moving in with my boyfriend to a new apartment on 9/13/08 - just 4 days after this new surgery date! This is a BIG move for us - I have lived in this apartment by myself for 3 years and accumulated quite a lot of stuff. My mom came over for several hours on Monday night and we did get a lot of packing/cleaning out done, but there is still much to do. And now Jason, my boyfriend, says he feels this must be completed before surgery on 9/9. Interesting... I guess that if we do that, then I could go stay with my parents. I would probably have to go home to stay with them after the surgery anyway.
But then yet another piece of this is that we are quickly approaching my grandfather's open heart surgery to replace 2 valves. That is a much, MUCH bigger deal, and my mom has to be there for my grandparents. I was supposed to be there for them, too, being the one with the medical knowledge in the family. We have now met all the surgeons, and my grandfather is deciding who he wants to go to over the weekend. I assume next week he will schedule his surgery - likely for the exact same week as mine and my move. I told my mom that my dad maybe could be there for my surgery as my bf cannot take off work. Oy....
Needless to say at the end of all this, I think my family could use a few vibes/prayers/positive thoughts, if you have any to spare! I'm actually glad that we are finally going to do something for this infection, even though the timing is a little less than ideal! I also had a new opthalmology appointment scheduled for the 9th that I've waited months for, which I'll have to move. And a GI appointment on the 8th, when I will now be seeing my neurosurgeon. Plus the pre-admission testing "Day of Fun" to go through again. (Last time I went to that "Day of Fun" I wound up in tears, exhausted, in pain, and miserable...but hey, it's a new day!)
And somehow in all the chaos, my paperwork for extension of absence STILL has not been submitted to the short-term disability insurance, so on top of all this, I am not getting paid. It's almost funny. I will get paid eventually, but it's frustrating that people don't realize that "NO MONEY" means "NO MONEY." Do you think they would act more quickly on the paperwork if it was them who was going to be without paycheck and unable to work? They have a large volume, and I know it'll get done eventually, but it is still frustrating...
I hope everyone else is having a decidedly better start to their Thursday!
Hugz and PF wishes,
Carrie
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