Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Hi everyone. I joined this group in early January 2004, then suddenly lost my Yahoo email and my ability to respond to your emails. I didn't know why and didn't have the time to delve into the situation with Yahoo. I just found out that my emails had " bounced " so they shut off my account. I have continued to read your posts daily all along and have been happy, sad, mad, frustrated, etc., along with you even though you didn't know it. To refresh your memories, I have a 13 year old nephew who has had RSD since April 2003. He's had a very rough time with the disease, as have all of you. I've done alot of research for my sister who is " computer illiterate " and refuses to learn who simple and informative the internet can be. My nephew, , just had a SCS implanted and now has relief with his resting pain (9 down to a 3, on good days). It is still healing, so his activities are limited, but he is trying to touch his foot and leg and do some weight-bearing (unable to walk for months). He has had to quit extra curricular activities, and now has home-bound schooling because of the severe pain. I have not actually seen any of this pain and suffering because I live in a different state, but from reading your posts, I feel like I know exactly what he and my sister are going through. I have a question about the spasms some of you have experienced. has what my sister describes as " seizures " as a severe pain response. The MDs have witnessed these episodes and say they are not seizures, but his body shakes and writhes, his eyes roll back, etc. - it really scared his classmates and teachers when it occurred at school. Has anyone experienced similar spasms? What did you do about it? Meds? My heart is with all of you. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Welcome back, Sharon. The spasms that I experience are not at all as severe as you describe but painful nonetheless, I get terrible muscle contractions in my arm and foot and really bizarre charley horses in my fingers. I'm sorry that your nephew is struggling with this and hope that his SCS will give him good relief. Tomorrow they are removing the one I had put in in November and implanting a new onebut doing it with a laminotomy instead. Not looking forward to the surgery but am anxious to get to a better place with the pain. My best to you and feel free to ask questions as they come up. Barbaraskmoore43 wrote: Hi everyone. I joined this group in early January 2004, then suddenly lost my Yahoo email and my ability to respond to your emails. I didn't know why and didn't have the time to delve into the situation with Yahoo. I just found out that my emails had "bounced" so they shut off my account. I have continued to read your posts daily all along and have been happy, sad, mad, frustrated, etc., along with you even though you didn't know it. To refresh your memories, I have a 13 year old nephew who has had RSD since April 2003. He's had a very rough time with the disease, as have all of you. I've done alot of research for my sister who is "computer illiterate" and refuses to learn who simple and informative the internet can be. My nephew, , just had a SCS implanted and now has relief with his resting pain (9 down to a 3, on good days). It is still healing, so his activities are limited, but he is trying to touch his foot and leg and do some weight-bearing (unable to walk for months). He has had to quit extra curricular activities, and now has home-bound schooling because of the severe pain. I have not actually seen any of this pain and suffering because I live in a different state, but from reading your posts, I feel like I know exactly what he and my sister are going through.I have a question about the spasms some of you have experienced. has what my sister describes as "seizures" as a severe pain response. The MDs have witnessed these episodes and say they are not seizures, but his body shakes and writhes, his eyes roll back, etc. - it really scared his classmates and teachers when it occurred at school. Has anyone experienced similar spasms? What did you do about it? Meds?My heart is with all of you. Sharon Community email addresses:Post message:RSD-CRPSofAmerica Shortcut URL to this page:http://groups.yahoo.com/group/RSD-CRPSofAmerica Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Tomorrow they are removing the one I had put in in November and implanting a new onebut doing it with a laminotomy instead. Not looking forward to the surgery but am anxious to get to a better place with the pain. Barbara: Thank you for your response to my “spasm” question. I, too, am hoping ’s SCS improves his situation, even if only with resting pain (doesn’t seem to affect any other pain). Will keep you posted. Also, my thoughts are with you in your surgery tomorrow. Hope you can experience less pain with the new SCS. Take care. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Thanks, Sharon. I'll keep in my thoughts and hop that he beats this bear. Barbara Quote Link to comment Share on other sites More sharing options...
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