Somehow I missed your post on the pump thread. No, the refill don't hurt. Well...they didn't hurt me for years because my abdomen (where the pump was) was numb. After a few years, the feeling came back and I could feel the needle going in. This did hurt a bit so I got this stuff called Emla cream which numbs the skin. I put it on about 2 hours before the refill and I feel nothing.
Hi folks, I have just had my SCS removed! It was put in March 2008 and after a couple of months and re programming several times was of no benefit at all.
There has been no pain from the two insertion sites and I feel great. It was only a ' day surgery' procedure and the dressings were changed twice. I would recommend removal to anyone experiencing less than optimal results!
Hey there, not sure if most of you have read my post, but I feel the need to add my two cents into the mix. I'm having mine removed in a couple of weeks.
When I got the stim unit I was told goodbye have a nice life. No one,even the dr, never said that it needed to be tweaked once a year. Once, again have a good life! See ya whenever. Not even the rep for the company ever say if any problems present itself call us....did you know that your unit can be programmed like into a 1000 different coverages in your body? It can! Wow, who knew after 3 years. My unit seemed to make the RSD, which started in ankle, get very angry and move up my leg toward the hip almost. Very painful to say the least, but you all know about that! I have to keep constantly moving the level of intensity to make it work. Of course, this is no good for my body just can't stand it anymore. In fact, I would probably say that it makes it worse then better. Isn't this aweful?
In my postings on the board I have stated that I have been fighting with W/C and doctors to have the item replaced or removed. Why keep an object in my body if it isn't doing the job properly? This has been a battle for over a year.......now I am winning. My pain is going to be there, but what can I do. My stim unit was placed into my butt which was told to me by the dr who will be doing the surgery that is was implanted improperly. GOSH! Who knew?! I couldnt' lie down straght, sit normal and have that blasted huge stim unit the size of a mans wallet in my A$$ anymore.
I look forward to the removal, the idea of sitting and lieing in bed feeling as comfortable as possible. I'm with anyone who wants to get it removed and for those considering it as an option think twice! The idea of the stim unit is just another way for the drs to generate money from W/C. What can they gain? Bigger pockets! In the meanwhile we suffer, fight for what little rights we might have with W/C and have heartache for years. My opinion not those of the establishment....but sure some of you will agree!
Just wanted to add my two cents too. I was told by my pm on my first visit, we do 5 blocks, see how that goes, put in a stimulator and you don't have to see me for 5 years. I'm with Scruffysdad that these reps and doctors need to tell us the truth. Unfortunately since that was my first pm doc, every person I've seen since wants to argue that it can't possibly be RSD because my foot isn't purple (I don't know about you guys, but my foot isn't purple ALL the time) and/or will only continue on with the first guy's treatment. I had concerns about it since I now have the dreaded "pre-existing" condition and wanted to know what happened if I had no insurance. His response was don't worry, you'll be on Medicaid. I'm so glad I didn't get one put in.
I wish you the best of luck. Had mine removed last December since it kept failing but they left part of a lead in so had more surgery in April to remove that and have neck fused due the the weakness in the spine caused by the multiple surgeries to replace leads. I agree that the SCS is treated as the end all to pain (and it DID help the time it was actually working) but we aren't told that annual surgeries to replace leads, batteries etc are required. Now I'm back to no pain relief and afraid to try anything....
I appear to have had an excellent pm doctor. He explained everything and I had sessions with the Precision rep who tried very hard to program my stimulator to no avail. It took 6 mths for me to convince the Dr. I wanted it removed. Done with absolutely no problems. Mine was not a w/comp but I have private health insurance which covered the procedure in a private hospital. Unfortunately I am scheduled for more unavoidable surgery and the pm Dr suggested I may need strong pain relief but I prefer to go without the stimulator!!
I am now doing more than I could with the stimulator in
Don't forget, we have to have a positive attitude and do all we can to help ourselves at all times.
Best wishes from Australia.
Last edited by ally79; 07-07-2009 at 12:49 AM.
The Following User Says Thank You to ally79 For This Useful Post: gabiegirl (01-19-2012)
I've been off/on this site since Jan. To make a very long story short; I agreed to a scs as I was told by a Medronic rep that 95% of all cases of rsd are halted where they exist at the moment; I was in terrible, terrible pain, hated being on all the heavy duty drugs, what a mess the drugs made of my personal life (I have rsd in my right elbow that now has moved up to my shoulder & down to my hand with my fingers growing knobs on the joints and now both my hands hurt terribly along with all the burning from my elbow to my armpit daily). I had the scs put in Sept. 08. It never ever worked past the back of my shoulder blade, they did a revision, sent me to Cleveland Clinic for an analysis (they said they could not get any better coverage either), then my pm por (yes, this is workman's comp - in a horrible economy where healthy people are looking for work, who's going to want a cripple that's doesn't have the ablitity to control my hand, not to mention the pain (again) and then there's no one to help me keep my home; I have no choice it seems but to do every stupid medical procedure they want, frankly they have me over a barrel)....the last revision of the lead wires didn't work; the pm doc sent me to yet another ortho surgeon who is "absolutely sure he can get coverage down my arm to my hand" like I didn't hear this in quote from the pm doctor. Dear God, what do I do now? anyone out there? I just so desperately want to back to work and take care of myself, find my own doctors, find other answers for this awful rsd that is so so bad at nite, normally a 10. I've read and printed alot of the answers from the stimulator site for my family to read; their just afraid I'll not do what the wc doc's want; I'll lose my home and probably worried I'll be a problem of their's then...I'd rather be a baglady at this point. Anyone, anywhere have any words of wisdom. I feel so alone and it just doesn't look to get any better. in any event, thanks for listening, and prayers for those in any kind of pain. S.
I know the pain, and especially the burning pain very well...my P.M. doc wanted me to get a SCS and gave me the video and the brochures, etc, etc, and kept telling me it would take care of the pain and I should do it...and she even made me feel guilty for not agreeing and doing the SCS...(or acutally, I made myself feel guilty..but she kept pushing it on me!!)
After research and all the reading on the message boards, I decided there were more risks than were being revealed.
Sooo, please get yourself an attorney who can review your rights with you...you are the one who decides on what to do with your body and what procedures, meds, etc, you want to take...W.C. can't force you to do what they want..I know it is a catch 22..because if you start to assert yourself, they become hostile..that's why you need an attorney!!! Make sure it is a good one.
I wish I had more experience with the SCS to be able to share with you but my main point is that you can decide what to do with yourself!! And they will intimitate you..oh yes they will!!!
I am wishing you ways to learn to cope with your pain...There are a lot of books and helpful methods (such as Mindfully Based Stress Reduction, pain management workbooks that help with strategies and methods to cope with pain..Has our pain doc referred you to a pain psych?
I am trying to learn and not do "catastrophy" thinking...thinking of the future and all the terrible things that can go wrong...like losing my job, not being able to pay the mortgage...who will take care of my 97 year old mother if I can't..etc, etc, etc, etc. I am trying to take one day at a time (very hard to do, I know) but I am trying ..and meditation helps me with this.
Thinking of you, xo
Hi Tigerlily & all hurting like hell & it doesnt' look to get any better. I've tried & tried to keep the faith " I live with rsd it doesn't live w/ me." ha. Not doing so good I guess, I know I need a pscyh dr. to talk to to help me deal w/ it all but it doesn't look like my pm doctor gives a hoot whether I need help in dealing with this crap...but; I will talk to him and see where it goes. But thank you for your caring thoughts. I'm just so tired of my daughters (both no-nonsense rn's that believe I ought to try yet again to get the leads to work with a different orth surgeon). They just don't get how horrible it was when they woke me up trying to force the lead from should on past to my arm...I get sick to my stomach thinking about it. Guess I need to toughen up, huh?! Others work while in awful pain, surely I ought to be able to....boy, am I tired. well, again thanks for hugs, support. I don't think for the most part, anyone understands, maybe they just don't want to be bother (family, friends). God, I hate to be a hassle, burden on anyone. well, guess it's 4:30 am now - may be I can try to sleep, or not. Take good care & may the angels look over you all. Sherry
It was 4:30 a.m. when you wrote your last post so you must have been sooo exhausted..
I hope you are able to get some good restorative sleep as that makes all the difference.
Do you think you might need to see a new pain doc if you think that this one doesn't really give a hoot about you?..Please check to see what your rights are with WC in your state ...you NEED help with the psychological upheaval of RSD..and a doc that is more understanding and will hear and listen to you!!
I know it's hard for you right now..you have people in your family advising you what to do...but in the end, you are the one who has to live with the pain, the procedures, the consequences of treatments so you need to listen to yourself ...and educate yourself as much as possible which you've probably already done..
Thanking of you and hoping you get some rest and relief..
Hugs from Tigerlily
just a update; seen the new ortho surgeon - took him x-rays, reports he never received from my pain/main dr. - did my research on him; "supposed" to be the best in eastern Ohio; much to my own, I don't even know what to call it - "just plain sure that he won't get the stimulation down my arm either" gutfeeling (but I haven't been right about anything from the start of this rsd thing)....I'm going in again in 2 days for him to put in a double paddle, since he's the only one that believe's the rsd is now in my left hand too...I just keep thinking lately; the neurontin, vicodin (the pm dr. wants me off of - can anyone imagine? I quit the oxycoton myself (made a mess of my financials as I could not think straight at all on this stuff); methodone helped immensely but left me totally one hundred percent lethargic so I asked him to back me down to Vicodin for pain (I was determined to just learn to live with this; 3 months ago ) but you all have read what a mess I've become because the pains' now unbearable nearly all the time...anyways, the meds are racking havic on my stomach (oh, had to have gallbladder surgery in May too along the way here) but now my stomach is beginning to bother alll the time...I just can't take the drugs....I hate them. I'm taking Zanaflex for the muscle spasms which does't seem to do much either so I've decided to let him try....and I know Tigerlily (thank you so much for your kindness, responding to me in such a touching manner...I can't tell you how I appreciate that)....I wonder why as you all do why in the world have decided to let them try this one more time...it's the drugs & how they make me feel...this is going to be tough; their even moving the stimulator from my butt cheek (oh, how comfy that's been) to under my right rib & he's going up into my C7 vetebre? (sorry for the spelling, getting tired) to try to get the stimulation down both my arms? But I'm here to you all; I'll keep in touch - let you know IF this time is different & works at all; maybe there will be something here for anyone even considering these stupidstimulators...personally; I don't think they've done enough research on these things to know much about them anywhere, no matter where you are located. And just so you know this too...both doctors have told me now that 75% of all original leads move and unless they are surgically attached to your vertebre they are going to move and not provide stimulation where you need it. So anyone out there considering this thing....keep in mind; these pain mainagement doctors that can work on your C4 verbetre to try to provide stimulation but the leads that aren't securely anchored in the first place are goingto move & it is a waste of your time. I've gone this far; I'm going to do this....I can't stand the drugs but drugs it will be if this doesn't work ( and yes, I've also read where orginally this kind of surgery works, at first, then yet again in a few months the stimulation stops yet again) .... I'll let you all know how this goes. I've got to quit feeling sorry for myself...become strong again & move on....one way or another. Thanks for listening...and thank you so much Tigerlily; you are right tho; my family's been a push for this...and I've got a new 3 month old granddaughter that I desperately want to be able to hold and babysit. I''m doing this for (her) Mallorie too. wish me well, I'll try to keep you all updated and maybe there will be something for all of us to learn here. Take good care Tigerlily & you all, God Bless & Keep You. Scioladyohio
Last edited by scioladyohio; 08-10-2009 at 08:53 AM.
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