I've been away a long time, wanted to update all of you
Hi friends,
I'm sorry that I have been away for so long, my health issues have taken me away from home a lot, either in the form of hospital stays or visits to the Cleveland Clinic for doctor visits, surgeries, etc...
Since I last posted, my spinal cord stimulator became infected. I developed a Staph (MSSA, not MRSA thank God) infection in my spinal cord around the device. I boarded an Amtrak train as soon as I realized I had an infection, and travelled all night and went right from the train to the ER at Cleveland Clinic. They weighed the risks of trying to save the implant VS the risks of continued infection, and decided that it would be best to remove the device, they started a PICC line for IV antibiotics that I would need to do for 6 weeks. This all happened at the beginning of September, I had the surgery and spent 10 days in the hospital in Cleveland, and returned home with the PICC and antibiotics. I started with one antibiotic, but they had to stop it because it was dropping my white blood count, so they switched me to Vancomycin IV, but I developed an allergic reaction, red man syndrome (hives, itching), but there was really no other choice, Vancomycin was the only choice for the type of infection I had. The Vancomycin waged war on my system, and I developed non-infectious meningitis from the Vancomycin, and suffered horrible headaches for weeks until it got out of my system.
I followed up with Infectious disease at the clinic in October, and as long as I was continuing to recover well, they cleared me for re-implanting the spinal cord stimulator. The neurosurgery dept had a concern about trying to get through the scar tissue from the infection, but after some more healing time, they were willing to give it another try. I felt like I had no choice but to try again, I cannot continue to suffer daily with the abdominal pain, and I am determined to get rid of the medications, at least some of them, I know the damage that they do long term, and in the end, I'd rather be in pain than suffer more damage to my body than what has already been done.
I had more ER/hospital stays while awaiting the date to have the stimulator put back in.
I went back to Cleveland April 5th, and had the spinal cord stimulator put back in, and they were able to do the more minimally invasive surgery, open spinal surgery was an option if this didn't work. I came home pretty sore and with two large incisions on either side of my spine, and one over my hip for the battery of the device. I just had my stitches out yesterday, and so far things look good. This is the time I hold my breath, it was after the stitches came out last time when I developed the infection, so we are checking the sites each day, even taking pictures to keep an eye on them for infection. The team at the Cleveland Clinic is amazing, and they are as dedicated as I am to getting my life as normal as possible, they realize all the damage that has been done in the past, and that most of it will be permanent. The Vagus nerve controls many things in the body, the obvious symptoms are digestive for me, but I still need to be evaulated for other areas that may be affected by the damage. I go back for a post-op check in Cleveland May 6th, I will feel a little safer and like the infection hurdle will be over by then. I will also meet with the rep from Boston Scientific at that time to see if any adjustments need to be made to the stimulator settings/location of nerve stimulation. Until the device scars itself in, it is hard to figure out the best location, as it can change direction just from me turning my head or twisting my back in different directions. It seems to be a bit too high right now, more into the ribcage, but I think they will be able to adjust it and get it in the right spot.
I still feel that going to Cleveland Clinic was the best decision, it has been very difficult for my husband and the kids, all the time I have to spend away from home to travel to Cleveland, but they know that each trip makes a dent in making me better, it's just really hard for us. We can't all pick up and go, there's work and school for the kids, and I have huge respect and love for my husband, when I am away he is the one holding everything together, heck, even when I am home, he's the one holding it together :)
I tried to make that the reader's digest version, there were some twists and turns in between, but I think this covers most of it. I'm sorry that I have been out of the loop for so long, and I hope this finds those who are suffering finding a way to health again.
Hugs,
Jules
I'm sorry that I have been away for so long, my health issues have taken me away from home a lot, either in the form of hospital stays or visits to the Cleveland Clinic for doctor visits, surgeries, etc...
Since I last posted, my spinal cord stimulator became infected. I developed a Staph (MSSA, not MRSA thank God) infection in my spinal cord around the device. I boarded an Amtrak train as soon as I realized I had an infection, and travelled all night and went right from the train to the ER at Cleveland Clinic. They weighed the risks of trying to save the implant VS the risks of continued infection, and decided that it would be best to remove the device, they started a PICC line for IV antibiotics that I would need to do for 6 weeks. This all happened at the beginning of September, I had the surgery and spent 10 days in the hospital in Cleveland, and returned home with the PICC and antibiotics. I started with one antibiotic, but they had to stop it because it was dropping my white blood count, so they switched me to Vancomycin IV, but I developed an allergic reaction, red man syndrome (hives, itching), but there was really no other choice, Vancomycin was the only choice for the type of infection I had. The Vancomycin waged war on my system, and I developed non-infectious meningitis from the Vancomycin, and suffered horrible headaches for weeks until it got out of my system.
I followed up with Infectious disease at the clinic in October, and as long as I was continuing to recover well, they cleared me for re-implanting the spinal cord stimulator. The neurosurgery dept had a concern about trying to get through the scar tissue from the infection, but after some more healing time, they were willing to give it another try. I felt like I had no choice but to try again, I cannot continue to suffer daily with the abdominal pain, and I am determined to get rid of the medications, at least some of them, I know the damage that they do long term, and in the end, I'd rather be in pain than suffer more damage to my body than what has already been done.
I had more ER/hospital stays while awaiting the date to have the stimulator put back in.
I went back to Cleveland April 5th, and had the spinal cord stimulator put back in, and they were able to do the more minimally invasive surgery, open spinal surgery was an option if this didn't work. I came home pretty sore and with two large incisions on either side of my spine, and one over my hip for the battery of the device. I just had my stitches out yesterday, and so far things look good. This is the time I hold my breath, it was after the stitches came out last time when I developed the infection, so we are checking the sites each day, even taking pictures to keep an eye on them for infection. The team at the Cleveland Clinic is amazing, and they are as dedicated as I am to getting my life as normal as possible, they realize all the damage that has been done in the past, and that most of it will be permanent. The Vagus nerve controls many things in the body, the obvious symptoms are digestive for me, but I still need to be evaulated for other areas that may be affected by the damage. I go back for a post-op check in Cleveland May 6th, I will feel a little safer and like the infection hurdle will be over by then. I will also meet with the rep from Boston Scientific at that time to see if any adjustments need to be made to the stimulator settings/location of nerve stimulation. Until the device scars itself in, it is hard to figure out the best location, as it can change direction just from me turning my head or twisting my back in different directions. It seems to be a bit too high right now, more into the ribcage, but I think they will be able to adjust it and get it in the right spot.
I still feel that going to Cleveland Clinic was the best decision, it has been very difficult for my husband and the kids, all the time I have to spend away from home to travel to Cleveland, but they know that each trip makes a dent in making me better, it's just really hard for us. We can't all pick up and go, there's work and school for the kids, and I have huge respect and love for my husband, when I am away he is the one holding everything together, heck, even when I am home, he's the one holding it together :)
I tried to make that the reader's digest version, there were some twists and turns in between, but I think this covers most of it. I'm sorry that I have been out of the loop for so long, and I hope this finds those who are suffering finding a way to health again.
Hugs,
Jules
Jules RNY 10/30/2007
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