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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Junior Member
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Hi,
I am considering getting a scs implanted. Has anyone gotten one? If so, did you experience any side effects from the surgery? Any info would be greatly appreciated. Thanks, Eileen |
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#2 | |||
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Run as fast as you can away from it. It will only cause you more problems if it actually works at all. This is only my opinion.
![]() Chin Up!!! Mark
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MARKY MARK THE MAN FROM MAINE...GOT RSD AND LOST HIS BRAIN!!!. AND NOW HE HAS TO USE A CAIN!!!
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"Thanks for this!" says: | hurting (09-03-2010) |
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#3 | |||
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i know this is a very 'touchy' subject.............there are many horror stories about the scs...........EVERY PERSON IS DIFFERENT.....what works for one, may not work for all......it is YOUR personal decision.......
frank just had the trial scs placed yesterday........he was told by me of all the pros and cons...... he was in such pain, he would do anything.............he goes to u of m hospital which is supposedly one of the best in the country, (we were pleased to see that)......his doctor left the decision up to him................. we met with a person from this forum who loves her scs, and she talked with frank about all that would occur.........from pain, comfort, relief, etc....she eased his mind, and did not sugar coat the recovery.....for this we are eternally grateful......(you know who you are) frank had a rough night with the pain from the insertion site..................his pain however, which has been at a ten for the past year, was now down to a 3 or 4....... he did sleep on the couch recliner, instead of our waterbed...........and he did get some sleep........his back is painful.......no doubt about that....and he is not on any of his pain meds....... HOWEVER today is a totally different ballgame........he feels such comfort, loves the tingle, and the pain is now about a ONE...... he has rsd in his entire left arm, starting at the neck..........................he is so excited, and happy, relieved, and acting like his 'normal' crazy self....if you could hear him now, he has his ipod with the headset, and is singing away......(not a pretty site).....laffff he told me that he was 'this close' to cancelling the procedure yesterday, but he is so glad he went ahead with it...he does not want to let them take it out.............................. so, this surely is a controversial subject, that is probably why not many persons have replied.........i know that mark has had horrible results from his.....i believe he has had two right mark? i know that you have suffered way too much.......... but the point is, everyone has different results.....the decision is yours, and just weigh the pros and cons.......... there is another forum http://health.groups.yahoo.com/group/Stimulator/ that you may like to check out too.....there are many many positive stories there............... good luck to you in your decision.............just do a lot of researching............. big hugs, claudia
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. claudia . |
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"Thanks for this!" says: | hurting (09-03-2010) |
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#4 | ||
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Junior Member
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Claudia is right. Everyone will react differently. I've had mine for going on 5 years now (I think). I've had 4 battery replacements and one revision to surgically implant the leads. The leads are in forever and I cannot have an MRI due to the leads. It is a huge decision and one only you can make. The trial is temporary and will give you an idea of how it will work for you. Mine was great the first year and started to taper off in it's effectiveness as the years went by. They would reprogram it, but it wasn't as effective for me as it was that first year.
Within our nonprofit organizaiton in MN we have several members with it. I'd say it is split 50/50. Would I do it again? YES, but not have it surgically implanted. That is where I made a mistake. The cathetor method is reversible. Hope this helps! Bonnie |
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"Thanks for this!" says: | hurting (09-03-2010) |
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#5 | ||
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Quote:
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#6 | |||
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frank is still doing great with his trial scs...........his arm is almost pain free, with just a little pain (about a 2) at his elbow, but when he turns his head just a tad, it goes down even lower..............
his back is still very sore tho. he does not want to take it out, except for his want of a shower.......lafff we dont' know how long between the trial and permanent one he will have to wait...........they want his back to heal first.......
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. claudia . |
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#7 | ||
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Junior Member
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An opinion on the SCS...
I would not do it again. I have had two from ANS (the Genesis and the Eon). The trial was much better than the implants. As far as the Reps that I had you may as well say that their heads were up their asses and maybe that is where some of the problem was. One would try to program me while she would eat her granola bar or breakfast. The records of the settings were not kept in my file at me Doctors’ office and then when the main one was on vacation and another was in to re-program it and could not program it (when a lead moved) was told no records were in my file. I asked the one who had been programming it and she told me they were “probably in her car”. I had always had it programmed at the doctor’ office that implanted it so it’s like what are they doing in your car and why are they leaving the office? Bottom line no records. I did not like the thumping sensation that the SCS - but I could not get this across to the rep - I think everytime she liked to make it thump harder and harder. Supposedly that is why they put in the rechargeable SCS to turn up the voltage so they could make it so it would not thump - and the Doctor keep saying he wanted the voltage turned up but she would not do it. Then I was dumb enough to let them put in the rechargeable one because it was “top of the line - so much better” - right after it would come on by itself and it never really work that is all that I would say - and the bottom line is they told me that I was not smart enough to have a SCS. I spoke to ANS directly and tried to work out the problem but to no avail. Once it is in there is yours and they really don’t care - every one has their money and lots of it! Now it's on to the pump...
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"Thanks for this!" says: | hurting (09-03-2010) |
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#8 | ||
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Junior Member
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Hi, did Frank get the permanent one? How is he? Hope you are both well!
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wishing you peace and relief! Sukadog crps2 right arm/hand since 8-28-08 (direct nerve injury) |
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#9 | ||
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Junior Member
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i totally agree, tried it three times. each time got infected.once out the pain was back in a matter of minutes.worse feeling i ever experienced in my life,brother use to crack on me cause i had a titanium battery in my ***.i was in so much pain just was looking for any kind of relief.totally advise against it,just the procedure alone was an horrible experience,plus still had to take meds,with it in
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#10 | ||
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Junior Member
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Finally got my Medtronic remover in early part of November , After 5months of waiting. The battery location is still giving me all kinds of problems yet, Feels like my arm that has th crps in it hope it didnt spread to that area just above waistline
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