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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Old 06-16-2010, 01:10 PM #11
bobinjeffmo bobinjeffmo is offline
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Default One other option worth considering

I'd understand your terror into every considering anything being implanted after what you've gone through, but I hope you don't close every door. I'm now on my 2nd morphine pump, and I'll tell you - these hockey puck sized devices have given me back my life.

On a sour note, while I didn't get an infection when I had my first one implanted, I did leak spinal fluid and for 4 days I just moaned couch-bound in pure misery. The headache lasted 2 weeks. Nevertheless, I still would recommend these wonderful gadgets because of how much better they are at moderating the pain throughout the day. My first one lasted 5 1/2 years before I had to replace it out and since we left the plumbing in place I didn't have the leaking problem the second time around. The second unit has slid down to my waist though so now it's even harder to bend over so there's always some drawbacks, but the ease in pain is real (being without it was when I really learned this lesson the hard way) so please don't totally give up on everything. Best of luck, Bob.

Quote:
Originally Posted by lostmary View Post
I got my first scs in Nov. of last year. It took at least 3 months before I didn't hurt every day. I loved it when it worked, but I discovered the battery had started to turn around in my butt. I was going to have the battery moved to my side, but right before surgery, the x-rays showed that the leads weren't in my spine anymore. They were off doing their own thing elsewhere. So we went for a complete removal of the old and a complete new unit in its place. Well, that hurt a lot, I had about 80 staples in my back, side, butt. A week after having the staples out, I developed a horrible infection pouring out of my incision on my side. Rushed me to ER, then into surgery. Had to remove the complete unit as the infection had gone up the leads and almost at the paddles in my spine. again, left with many stitches, and an open wound. that landed me in a nursing home for a week. (never again). I now have nothing in me, and I look like Frankensteins wife. I don't think I will ever have it inserted again. I have decided that a life of drugs has to be better then what I have gone thr so far. I still think it is a great unit, and just because I had a problem with it, I would never tell anyone not to try it. I really think it works, and it did work for me.

hope that helps

hugs
Mary
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Old 06-16-2010, 05:56 PM #12
Jimking Jimking is offline
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Quote:
Originally Posted by bobinjeffmo View Post
I'd understand your terror into every considering anything being implanted after what you've gone through, but I hope you don't close every door. I'm now on my 2nd morphine pump, and I'll tell you - these hockey puck sized devices have given me back my life.

On a sour note, while I didn't get an infection when I had my first one implanted, I did leak spinal fluid and for 4 days I just moaned couch-bound in pure misery. The headache lasted 2 weeks. Nevertheless, I still would recommend these wonderful gadgets because of how much better they are at moderating the pain throughout the day. My first one lasted 5 1/2 years before I had to replace it out and since we left the plumbing in place I didn't have the leaking problem the second time around. The second unit has slid down to my waist though so now it's even harder to bend over so there's always some drawbacks, but the ease in pain is real (being without it was when I really learned this lesson the hard way) so please don't totally give up on everything. Best of luck, Bob.
bobinjeffmo, the post by Lostmary was from 2008. She just recently had a pain pump implant and swears her pain level is so far down she's headed back to work and started riding her horses again. The last post I read of hers she stated her pain level was down to "two". Check out her other posts, they sure do inspire others with this monster of a disease.
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Old 06-17-2010, 04:46 PM #13
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Some info I found kinda interesting and thought I would share the link here.

http://crps.physiciansforpatients.co...iscussions/181

Peace
BMW
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Old 01-15-2011, 12:33 AM #14
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Quote:
Originally Posted by thezyne View Post
Sorry to hear about everyones bad reactions and experiences to the implant!!

I myself and an SCS implant waiting to happen. I'm having my surgical consult later today in regards to this.
This is my 3rd back surgery in about 30 months. An L5/S1 discectomy hemi-laminectomy in May of 2008, recovered wonderfully and was doing great. Managed to fall while playing with my dog, that laid the ground work for surgery #2. Another L5/S1 discectomy/full laminectomy this time.
I've never been right since the second surgery. I have as of a while back been diagnosed with failed discectomy/laminectomy syndrome .. so needless to say, I'm bummed.
I read one of your guys' posts about levels of tramadol, neurontin and so forth getting out of control. Guys, if that's all you take, I envy you! 100mg of morphine sulfate 3 times/day, anywhere from 8-12 vicodin ES for the accute pain, and of course 600mg neurontin/3 times day.
So with this said, SCS is my last shot at dealing with this pain. I work in IT managing a very large corporate network so keep my head functioning is a must. The implant is my only option for staying off disability at this point.

I'd like to hear some more of your input on this. Especially from ya'll with the problem implants. I am personally very excited about this as conventional drug therapy is far from effective on my pain levels or something I can live with as a professional .. or my employer!

Thanks in advance!!

Nick
Did you have the implant done yet? Im just curious how things have turned out for you and Im lost in all the posts on the thread. My husband is getting ready to have his done this year (2011) He takes Moprhine 3x a day, percoset 4x a day, neurontin 2x a day, cymbalta 2x a day... then he takes celexa, to try to help with some depression, atenolol for a rapid heart beat that darvocet ended up giving him, amatiza for the constipation, pantoprozole (sp) for his stomach from all the meds, phenergan... theres 2 others, theyre new so I cant think of them, one is a muscle relaxer or something to help him sleep. He is in so much pain he hasnt had a shoe on his foot in almost 4 years, he wears a cam boot (walking cast) so that nothing bumps him because a slight bump as most of you know can trigger massive pain for hours following. He is going to be getting therapy soon, to help with his depression.

He knows he is permanently disabled. He got on SSD, first time he applied, he was approved. He cant drive right now. All he wants to be able to do is put on a shoe, be able to drive a car and possible walk with a cane instead of crutches. He hasnt walked in nearly 4 years without crutches. Sigh... my heart can only go out to those who have this horrid disease. I have neuropathy in my feet and I still cant imagine what you go through. God bless and my prayers to all...
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