I know this may seem kind of personal, a lot of people are weird about the whole age question. but i was wondering, the people who have had a good response from the stimulator how old were you when you got it and how old are you now. Same question for the people who have had problems with it. i was wondering because i am in my late teens and have had the stimulator since october of last year and i have had so many promlems with this stupid thing. then recentely i found out that a friend of mine from dance classes several years ago developed rsd in her ankle, well she just got her stimualtor like a month or two ago and now she is starting to have problems with it. shes my age. we are both having severe pain in our back. hers is between the battery and the leads and mine is all over the place. so i dont know if age and body maturity has anything to do with how well it works. i know that we are not supposed to talk about age on here or whatever, but i think this is a good reason to bring it up. How exactley do you get permission to put stuff like that on here? anyways, but give me as much inforamtion as you are allowed, without getting in trouble lol. thanks everyone!
Amber
There's a magazine called Pain Medicine News that's got some interesting articles on that correlation. I don't think I'm allowed to post more on it (I've noticed my posts are getting deleted like crazy)... but check in with your doc (they usually have subscriptions to it).
I also think their is a much stronger correlation with type of system...
y2khawk, but have you had problems with yours? or have they worked like they are supposed to? and i have tried so many times to get the stimulator reprogrammed but it doesnt last long. i would have to get it done literally like every two weeks to keep the thing working right.
Everytime mine has been reprogrammed they have held. What brand do you have? I have ANS and they are great people, 1 phone call and they are calling me back for any question I have.
Everytime mine has been reprogrammed they have held. What brand do you have? I have ANS and they are great people, 1 phone call and they are calling me back for any question I have.
I think that's the source of most problems. I have yet to see anything negative on these boards about ANS or Boston Scientific... as for Medtronic on the other hand... I'm not sure I've seen anything positive
Hi I just had the implant last Tuesday with the permanent stim . The whole operationg was painful . I was alert for the Laminectomy and I felt every cut they made on my back and bumm.
I'm curious how fast you got relief from this . The reason I had this done was because of back /outside of leg's and feet . My reason for asking this is because I don't feel any sensation where it is supposed to be , only on the calf of my outside leg , not on top of my foot or top of feet and ankle. Will the sensation get better for me ? If I crank it up where it does help the pain my back /rib's hurt like someone punched me and my leg's give out from me.
I had so much relief from the trial and that's why I decided to get the stim but so far I'm dissapointed. It does help with the hip shooters I get. So it's not a complete failure , I'm thinking when it heals more maybe I'll get better relief right ?
Thank's for your help.
Hi, I was 35 when I got my first scs. I am 39 now. I just had a new implant 5 weeks ago. when I turn the stimulator up I get terrible pains in the lead and up my neck. My scs is implanted in my cervical area. I am still hoping that time will take care of this but I am starting to wonder. I have had mine programed 3 times now. I am to the point now that I am afraid to use it because of the pain.
I think that's the source of most problems. I have yet to see anything negative on these boards about ANS or Boston Scientific... as for Medtronic on the other hand... I'm not sure I've seen anything positive
I wasn't going to mention any names but since you brought them up, that has been what I have heard from numerous people. My Doc told me that Medtronic is not for people with RSD pain.
I have one that is cervical and one to the lower back, legs and feet.
My Doc told me that he has been on a board like this one for doctors and he has worked with all of the different stims and they all have differerent makeups and components but are generally the same and he is a founder of a spinal cord foundation. I have a Medtronic and I was worried and there are just as many problems with ANS and Boston Scientific. He said that he has asked doctors from ALL over the world and ones that do not use one certain brand and some that do. SoCal with all due respect I think you are misleading a lot of people. You cannot tell me that you do not represent these companies. I did my research and from what you said it scared me and I looked into the other brands and there are just as many problems. Why dont you be the guinea pig and get one implanted and then you can start handing out the expert advice. I am going for my second stim on Thurs. and I do not need a salesmen giving me anymore to worry about than I already have on my plate. If you truly want to help put all three in you and see which one lasts the longest and let us all know. Maybe there is a reason all of your posts are getting deleted by the moderators? Do they have SalesMenBoards because you might have better luck there. I have tried to be nice and I have even given you the benefit of the doubt but the only thing you are doing is selling ANS and Boston Scientific Stims and I really think that this board should be for support and not about making money or promoting products-Say what you want but you have been freaking a bunch of people out and I think you are misinforming them. You made your point and when I even asked you about the leads and the difference you are not interested in helping just killing Medtronics and selling the other two. Some people are not offered these other brands and you are freaking them out and taking away any little hope they may have had for a little pain relief...
I read you loud and clear you have made your point time and time again you hate Medtronic enough already and this is only on the rsd boards, you have even made your point on other topics what other products do ANS and Boston Scientific make? Now's the time. I am sorry but I am so tired of seeing all of the same posts saying the same things it is obvious what your intentions are!!!...
Hi I just had the implant last Tuesday with the permanent stim . The whole operationg was painful . I was alert for the Laminectomy and I felt every cut they made on my back and bumm.
I'm curious how fast you got relief from this . The reason I had this done was because of back /outside of leg's and feet . My reason for asking this is because I don't feel any sensation where it is supposed to be , only on the calf of my outside leg , not on top of my foot or top of feet and ankle. Will the sensation get better for me ? If I crank it up where it does help the pain my back /rib's hurt like someone punched me and my leg's give out from me.
I had so much relief from the trial and that's why I decided to get the stim but so far I'm dissapointed. It does help with the hip shooters I get. So it's not a complete failure , I'm thinking when it heals more maybe I'll get better relief right ?
Thank's for your help.
Shawley
Hey Shawley,
Try to be patient with the healing after the implant, especially if it was via a laminotomy... The pain and swelling will take longer to subside than it did from the trial... but at the same time this really shouldn't have that much of an impact on the stimulation. Your stimulation should be working right out of the gate.
If you're turning the stimulation up and getting a pulling/grabbing sensation in your ribs, then you need to get reprogrammed.
Do you know what level they placed your paddle lead (i.e. T12, L1)? Secondly, is the stimulation in both legs, or is it confined to 1 leg?
I wasn't going to mention any names but since you brought them up, that has been what I have heard from numerous people. My Doc told me that Medtronic is not for people with RSD pain.
I know several docs who would very strongly agree with your doc. It's a growing consensus, that's for sure. There was actually a movement out here a few years ago to have Medtronic stim contraindicated for RSD... not sure whatever came of that. Either way, that's great to hear your system is working for you.
Howdy Everyone...As some of you know I have a SCS. I had my SCS placed in the summer of 06 and have had nothing but troubles with it. I am in my early 40's. THe sad part is I like my SCS it does help my pain. But I have to hold my head a certain way or lay down in a certain postion to get it to work. I started having trouble with my SCS just right after it was put in. I waited because we thought it would heal and secure itself into place better....well it has never happened....and her I sit with a non working SCS. ANd scared to death to have it replaced...because each time I am cut the pain is so much worse. But I am at the point and willing to have my SCS replaced because I am spending more and more time laying down so I can have my SCS on....but I will also so the SCS has never allowed me to cut back on the medications...in fact had to increase the medications after both surgeries do to increased pain.
I also want to say to everyone.....before I had my SCS inplanted. I did alot of research regarding all the different companys and please if you are going to be having a SCS inplanted in you....you need to also be for doing all the research about what kind of device you will be having inplanted into you. Ask your Dr. the brand that he will be using and why he has choose that brand. Come and look it up....up will find all the information here on the internet. You must feel comfortable with what is going to be implanted into you. Please do not let one person guide you to what is the best or what isn't. I spent time with my Dr and rep from the company for my SCS before mine was inplanted. I felt good with what was going to happen. Yes, I have had trouble with my SCS do I blame my Dr. or the rep NO. I have even seen two other Dr's regarding my SCS. And now have learned that there is different kind of lead ends that just may fix my problem...it does give me hope. But also the fear of more spread. I just know that all of your bodies are different and what may work for one may not work for another.
And after my SCS didn't work out as planned I continued to do alot of research.....and guess what I still think I got one of the best....just as my DR said I did.
I guess what I am trying to say...is what may work for one may not work for another. And Jax you are very right NO ONE should try to sell a certain brand on here. We need supportive people here...not someone selling something. That shouldn't be allowed. I don't mind telling people what brand SCS I have so they could read about them. But I won't try to scare them to death....or sell them.
My husband had a SCS implanted in February, right before he turned 47. He has RSD in his right hand. The SCS relieved his pain for close to 3 months. For the last 2 months he has had it reprogrammed twice and he is still not getting any relief. His SCS is ANS.
Dee,
Thank you. I am not a mean person and it took a lot for me to get to that point. It really bothered me for days because I did not want to lose respect or friends on this thread. It has literally been one of the best things that has happened to me since this whole nightmare began. Truly it is the only support system I have besides my husband and a friend who reads this post but noone knows. It means a lot I do not want to be a hater but I am so scared what if it makes this worse on Thursday and I am trying my hardest to stay positive and it is hard with someone who is drilling in that what I am about to do is a big mistake. I am in a wheelchair and I cannot give up that is not me I need to keep trying. I was married on Mt. Wash and I want to hike with the kids someday to show the kids where mom and dad were married. I have so much I want to do and I am only 32 and I am scared to death and for Mantra to post a different brand that has problems it makes me feel better I really think this board should be for supporters because it is litterally a lifeline to people. I remember the first day I came on and got welcomed by you and many other and have never stopped since. I do not think I have missed a day. Thank you Dee. It really means a lot I have been feeling a lot of guilt even though my husband says I did the right thing. I hope you have a great night...Nikki I am sending a hug!!!
WELL.....i agree with you jax, i dont think it really has anything to do with the brand of stimulator. they are all basically the same thing. there is no way you could loose respect from us for that, honestly you have gained it! for standing up for ehat you feel is right, so many people will not do that anymore. I mean i have a medtronics, but then again i never researched any other brands or even asked about it. i guess i was just so young, nieve, and looking for any relief. that i didnt care.
but from what everything i have read it doesnt seem like age has anything to do with it. people like me (17) and people in their 40's seem to have the same problems.
i just dont know what to do anymore. i am supposed to get it reprogrammed again on thursday, but i honestly dont think it will work. it hasnt the last seven times. but we will see what happens next. they are talking about sending me back to the neurologist, which i will not unless they send me to a new one. its just so frusterating, it seems like nothing works anymore. i dont want to live my life like this. you know what? i think that will be my life's mission. i have always wanted to be a doctor, so why dont i find a cure for rsd. i could test everything out on me.....what ya think??? lol. crazy i know but a girl can dream. some days its just to much to handle. i am so glad i have you guys here, who really understand what im going through! thank you guys so much, you really do mean a lot to me. i know its sounds funny but its i feel like this is kinda like my rsd family in a way. thanks again.
Amber
Amber,
I will make a deal with you if you become a doctor I will travel by plane if I have to to be your patient. Deal?!? You are only 17? I am so sorry that is so sad. I was 23 when I was diagnosed I think- my brain is mush. What kind of paddles do you have? I know what you are saying I had no idea about other stims it was just such relief, that I just took the leap of faith. Has it traveled. I know what you are saying it is like a family and pretty much everything I read I can relate to in some way it is very comforting. I have been reprogrammed too but I was so confused and I think I lost my patience to tell you the truth. I was in a lot of pain that day and just wanted to go home and rest. Going in two days to get either a second stim implanted- have no idea how I am going to deal with two in me, but they are going to try and put one double-sided paddle in me to cover both legs. I hope it works. Funny thing is I never wore shoes in the summer and now since I can't I want to sooo bad. I fell the other night and my stim is a bit off. My head tilt does not give me such a strong signal. Then today my arm got caught on the wheelchair joystick and I ran over my foot. The strange thing was it hurt so bad that it did not hurt. It was like I went into shock. I have a wheelmark of black and red with broken bloodvessels but at least the surgery is right around the corner. The day after indepandence day so I hope that means something.
Without me going on about this thank you about the other negative issue and me standing up for what I thought was right I appreciate it. Hurry up and get to work and find a cure for this thing would yah?!? I've had enough already joke's over LOL... Have a great night Nikki...
Sorry it took so long to repost to you. I have stimulation in both legs and feet ,2 programs. I don't get anything in my toes , I have been trying to contact my Rep , but like you said they won't even return my call's. I'm totally bumbed about this implant. I don't get much sensation where it's needed . I need it on the outside of my legs not the inside ? If I crank it up I feel it on the outside but the sensation is way to strong by then. My rib's feel like someone punched me in both sides and it's been 2 week's since the implant.
Thanks for helping me.
Quote:
Originally Posted by SoCalRaider
Hey Shawley,
Try to be patient with the healing after the implant, especially if it was via a laminotomy... The pain and swelling will take longer to subside than it did from the trial... but at the same time this really shouldn't have that much of an impact on the stimulation. Your stimulation should be working right out of the gate.
If you're turning the stimulation up and getting a pulling/grabbing sensation in your ribs, then you need to get reprogrammed.
Do you know what level they placed your paddle lead (i.e. T12, L1)? Secondly, is the stimulation in both legs, or is it confined to 1 leg?
BTW I'm 41 yrs old , had the stim implant two weeks ago.
Funny thing , they put the wires in from between my shoulder blades down to my Lumbar area . I used to have pain in my lower back / feet and legs , now my pain is lower back / midback/ ribs and feet. Garsh what did I get myself into this time ?
The reason for the stim is I had an injury at work had 3 spine surgeries and got nerve damage and now this stim implant ! I don't think age has much of a difference with this thing working or not..The trial helped me out so much. I can't get it to work right either , if my back starts hurting I need to lie down but when I do the stim get's real strong and I have to turn it down , but then my leg's and feet start hurting..A no win situation . I can't stand or sit for a period of time do to pain ???
