I could really use some thoughts from people who have been there..
Posted , 2 users are following.
ok, let me start here, on march 30,2018, i had the St. Judes neuro simulator implanted. The first couple of 2 weeks it was painful but went away. It worked for me the next 3 weeks were great until, this last friday. i started to feel funny, getting a low grade fever along with being really tired, i thought something wasnt right but my temp wasnt 101.5 so i was good. Not so much about midnight it went to 102.6, so n the morning i went to the hospital, my closest which has good ratings. I was admitted that morning after the CT scan came back showing abscesses around the simulator and the leads, i gave them the names of the surgeons who have worked on my back i like to keep the docs together so there is less likely of any mix ups. only one of the surgeons had privileges at the hospital i was at. so fast forward a bit. Monday they contacted the surgeon who had privileges at their hospital, who the actually contact the surgeon who did the surgery. so a bit later the took me down to radiology lab to see if they could drain the abscess. They did drain some of it and enough to get a sample to get tested so the can treat the infection. both of my surgeons have privileges at another hospital, so after talking to them i decided to be moved to the other hospital, after my surgeons found out i had decided to be transported,they actually put a team in place i was in the or within a half hour of arrival, i was pretty impressed.. so today i can tell i am feeling much better and finally this afternoon did not have a fever. so some are my questions are 1. if it was caused by me rejecting the implant, is it more likely to happen again? 2. do abscesses just happen even after 5 weeks and could it happen like this again, maybe 10 weeks? I really loved my stim unit it work great until the making me sick thing, which leads me to 3. is it worth trying again? Im kinda a numbers girl, looking at percentages really helps me decide, and yes i know they dont guarantee the numbers for everyone but for some reason it help
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Disley66 samantha08562
Posted
Are you in the United States? I live in Australia and in 2017
I had the exact same stimulator as you implanted in my abdomen (which seems to be the preference here) and like you it worked brilliantly (I had lower left leg pain after way too much surgery following an accident in 2006) but had to be moved slightly higher because of it impeding my bending ability. So that was surgery number 3 (the first obviously being the trial and then the permanent implant). By that stage I was in to about my 8th month and most of that seemed to be recovering f Ok the surgery each time. I didn’t mind because I thought of it as a means to an end to be honest with you. Anyway, after that last surgery I just never really recovered properly and started getting a lot of pain under my ribs on my right side and also in my lower back where the leads had been inserted. Then one morning I noticed a little spot had firmed one end of the scar on my back. I didn’t worry unduly but it got bigger. I couldn’t see it, as obviously I don’t have a “swivelling head” (which would be great for doing your hair !) so I asked my partner to take a photo of it with my iPhone. It was such a strange looking creature let me tell you ! It was a maroon/purple colour and about the size of a pea by this stage. I went to my GP and he said it was “nothing”(idiot) and if Inwas bothered about it catching in my jeans or whatever to put a band aid over it. Charming!!
I was not comfortable with his “non-duagnosis” so made an appointment with my surgeon, who wanted to see me immediately when I explained the situation. He took one look at “the creature” and said he needed to remove the stimulator immediately because he feared “creature” could work through (if not already) the scar and set up a “staff infection “.......he operated first thing the next morning and cleaned everything up. I was extremely lucky that “creature” had not managed to break through but thank God I went with my instincts and ignored my GP. So, a year wasted in one way but the really odd thing is the pain in my leg is now so minimal it’s incredible. The Specialist said that it’s called “Neural plasticity”. Basically the brain has retrained the nerves in my leg. (Or something like that).
What I have been shocked about since finding this site a year ago are the amount of people in the United States who end up with shocking infections/abscesses and the like, due to these little “menaces” That’s why I asked you where you lived. I have not found anyone else on get from Australia so I can not compare. There are many cases where the Drs dont want to know once it all goes “pear shaped” and I have actually advised a few people to seek legal help because it’s the absolute responsibility on those surgeons to sort out any problems. I was very lucky, not only did I have a first class Surgeon but he never refused to see me no matter how busy he was. Quite frankly, if I had the problems you and many others had I would be having said “menace” removed. Obviously there are still hundreds of people who have had complete success otherwise the stimulators would be banned. I have been offered another treatment if needed which is non surgical and also tricks the brain into thinking the pain is gone but at this point I am ok.
I am pleased you, like me, have excellent Surgeons, but like me (only worse) I believe your body is rejecting the “menace”. Good luck Sam, let me know how u get in.