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Old 05-22-2012, 05:35 PM
luckyscharm luckyscharm is offline
New Member
 
Join Date: May 2012
Posts: 1
10 yr Member
luckyscharm luckyscharm is offline
New Member
 
Join Date: May 2012
Posts: 1
10 yr Member
Default my experience

my experience has been difficult at best. I had a spinal chord stimulator implanted in 2010..it doesn't take the pain away, it disguises the pain..however, it is supposed to stimulate both of my arms and only stimulates my left arm. After the implant, I have had unbelievable problems with my neck and killer headaches because, according to specialists, my occipital nerve was damaged during the implant. They can do a temp or a perm block of this nerve but it's painful, so I'm told, and it leaves you unable to feel your head..which,after the implant, I couldn't feel my head for roughly eight months..that in itself was miserable.Until today, every doctor I have seen has said that RSD does not get better, only worse..today's dr said it gets better. The meds I take are minimal because I'm too afraid of addiction and, they either knock me out or make me itch or throw up. The flareups are excruciating and the headaches are crippling. Workers comp seems to think I have no reason to be depressed and should be able to work every day..WHATEVER!! On most days I can manage to cope with the medical but add even one other life stressor and I'm doomed for at least two weeks. Stress aggravates everything as I'm sure you know. I can't tolerate heat or cold and have trouble judging temps of running water. I am super sensitive to light; can't stand to be touched; do not deal well with people, even those I know. This thing called RSD has turned my life upside down and inside out. I thought the spinal chord stim. was going to be the fixall at least to tolerable levels...boy was I wrong..my neck only recently started turning to the right, still barely turns to the left, I have severe balance issues, can't stand or walk very far/very long due to the pain in my neck and upper/mid back since the implant, dizzy spells, severe headaches, trouble sleeping,and so on. If you are considering the spinal chord stim. implant, they do a trial run first to see if you can tolerate the stimulation..they put you to sleep and insert the leads into your spine,wake you up and ask you questions,put you back under and tape everything down..my back was totally covered with tape and I had big wires taped also and was so afraid of getting them tangled up on something that while I tolerated the stimulation, the trial run was miserable so my dr took it out, which is done without sedation but was only a bit uncomfortable..the actual implant was pure torture but could be blamed on the dr because he was beyond horrible in so many ways..be sure to ask what they will give you for pain expecially, if like me, you are allergic to what they refer to as "the good stuff".He didn't give me any antibiotics and the incision which went from the bottom of my neck up high into my head(not lower neck/upper back as I had been told)became severely infected which meant a delay in removing the stitches...my hair was knotted like big, thick rope because they put my head in a halo..seriously, had to have a friend come comb it out for me..tons of conditioner/detangler and six hours of combing, she still had to cut off a big chunk that just refused to work loose.Guess what I'm saying is...if I had it to do over again, I would not opt for the implant..and you need to know also...once it's implanted, they will not take it out because it's too dangerous(or, that's what I've been told)and the generator they implant has gotten uncomfortable at times. For all those drs who think there is no such thing as RSD, come live with me and stick around during a flareup and then tell me if it isn't RSD, what the heck it is cuz it is horrific!
Quote:
Originally Posted by Izzabella View Post
Hello! I am new to this thread/group.. And I see all the post so I do hope someone out there can relate to my situation because I feel very alone in this daily fight!! This is a daily fight in everyway.. Everyday tasks are such a challenge!! I've had 3 back surgeries and one of them left me almost crippled.. I have been to more Drs then I can count.. I now have a very good neurosurgeon who is going to put in a spinal cord stimulator to try to help with some of the pain.. But he did say it will only help with some of the pain since my nerve damage is so bad.. I feel very alone in this because I can now barley cook dinner anymore.. My family is very understanding but they will never know what this type of daily pain is like to deal with everyday.. I find myself crying in the bathroom so I don't worry anyone.. But the pain effects every part of my life..I take Norco 5mg but that's it.. My primary dr who deals with the medication part of this I don't think truly understands the severity of RSD.. So he says to take 2 Norco a day.. I'm just at my wits end.. I remember how I use be before the RSD and it is like another person .. My mother who is 83 complains about her aches and pains but she gets around better then I do!! I would love to hear if anyone else feels alone in this.. I just recently went through a mastectomy w reconstruction and it wasn't as difficult as my RSD!! Best to everyone facing this battle!!
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