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Discussion on SCS & Pain Pumps
I currently have my 3rd SCS and would not be able to cope without it! I takes care of the worst pain so I can function with only a small amount of other pain medications for the most part.
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Agreeing With SCS
I agree that the SCS is a lifesaver. I have my second one now. It helps my legs and I couldn't walk without it.
DebDog |
how many areas can scs help?
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Newbie to this forum
I have been suffering from chronic pain for several years and now am at the point where the amount of oxy I require to control the pain is interfering with my life. This situation can only get worse as I get older and my body tolerates more and more stuff. I am also "labeled" as one of "those" who takes oxy for "pain". Even Walgreen's, in my opinion, discourages us "pain addicts" from filling their script in their stores. (I am retired and live in S. Florida where you can find a pain clinic as easily as a pizza parlour.)
So for all of these reasons I chose to explore a SCS and discovered this forum via a Google search. I am greatful for all the information provided. However IMHO the majority of posts are negative and spell out in detail the problems people have had with the SCS, their "reps" what ever they or their role is/are, their surgeons and their devices. At least I now have a list of issues to discuss with my pain person. But I am left with a deep sense of unease. I can't tell if people who have had SCS implementation would have it again, would recommend to a family member or what the major trade off's are. It's like a virtual group therapy session, where everyone is right and everyone gets a group hug. You can't tell what real and what's not, what's fact and what a wish. Maybe a disclaimer is in order. Maybe some real data from "poster's" is in order like age, length of time in "pain", kind of insurance, manufacturer, type of pain and location, etc. The decision is get an SCS is too important and IMHO not helped by "virtual hugs". I don't write this to offend anyone, I'm only looking for a way to make this valuable resource even more so. |
Imho
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Sorry you haven't apparently knocked into the SCS/Pain Pump Subforum. We have a good many people who have worked through procedures there, both positive and negative. The majority of those among whom I have read of late have been of the more positive bent. A Thread chronicling my adventure through the process of having Boston Scientific Mini Rechargeable SCS is found there. Perhaps you did not give it a gander. Now as to my age, since you ask, 56, hence my moniker Mark56. Would I recommend the process for consideration by others, not only would I, but I have given information directly to others who have asked. Would I have a family member go through this? Sure. My family can more truly speak to this, but, dear Visitor, you would need to read my thread to pick up on their perspective. Stick around. We are pretty informative, congenial, raucous [well..... some are], and yearning to help others to try to have information to make better informed decisions for their lives..... yours included, my friend. Hope to see you around, Mark56:winky: |
Hi Davidhm !
You've found a wonderful place!
Feel free to come down to the actual forum where the members are actively sharing info....... This is at the top of the page in the "Stickie"....... We'd love to help the best we can.....we'll need a bit more info to go on, however. "Chronic Pain" doesn't give us much to go by. There's aLOT more goin on with these folks than simply cyberhugging ;), so please feel free to start a thread down below and give us a bit more to go on and we'll give good straightforward feedback. What type of 'Chronic Pain' do you suffer? Rae |
New SCS
Had implant procedure of SCS done on 25 Aug after successful trial, currently going thru acute pain from procedure:(, reading previous post seem like it something a lot of us went thru, and based upon mark56 and Rae it seem like its worth the pain will have my SCS turned on sep 9th, its day five(5) and acute pain get better each day. I had some serious pain:mad: day after surgery in stomach area spent day in emergency room, and doc said could not find anything wrong, I think I messed up after surgery I ate too much:)
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Hello, I am 33 years old and have the medtronic myStim implant. I have had chronic pain since I was 13 (I have juvenile disc degeneration disease, scoliosis and osteoarthritis) and have several epidurals (over 20) and back surgery in 2004. I have pain down both my legs and hips and lower back and I was on MS Contin and Endocet. The implant has taken away about 90% of the pain in my right leg/hip/back and about 70% in my left side. I am thrilled and I have recommended it to several people. This has been a lifesaver because I feel like I can live my life again. Go through the one week trial, see if you like it. If you don't you can have it removed and you do not have to get the permanent one placed. Good luck! |
pain pump
I HAVE QUESTION HOW MUCH THOSE HELP WITH CSF LEAK??????????
I HAVEVE ALSO BACK PAIN BUT CSF LEAK IS CONCERNING ME BECAUSE HEADACHE IS POSITIONAL AND WOULD THIS HELP? CATHETER IS NEAR SPINE, I THINK. PLEASE ANSWER TO ** thanx |
question about scs pain pump
My name is Jocelyn and I just found this site today. I am so happy to have found other people to discuss my health issues with. I can talk about it with my husband and other family members, but it's easier to talk to people that know exactly how I feel & what I am going through. I suffer with Reflex Sympathetic Dystrophy (RSD) and I am curious about the scs pain pump. Does the pump put out some sort of pain medication? If so, what is it called? At this time, I am on percocet, neurontin, zanax and amitryptaline, with no relief!
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Hello Jocelyn!
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Here is a link to a site that explains these devices real well: http://www.nationalpainfoundation.or...e-technologies Have you met any of the folks at the RSD forum here at NT? It's a wonderful active forum full of folks who will give much support to the battle you face. You might want to start a thread in the main SCS/Pain Pump forum below. More people will see your post and be able to give good feedback. This is the 'stickie' section of the forum. It's mainly a place for informational purposes....but if you post down below, other members will see your thread and be able to give good input. It's good to have you here! Rae :hug: |
Perifereal neuropathy in feet
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Former SCS..now a pumper
I've been there done that with both and on my 2nd pain pump. Started with SCS back in 11/99; led to 1st revision in 5/00 due to one lead broke, the other bent. I have systemic (total body) CRPS/RSD. During the SCS, I suffered marked increase in seizures, despite my neurologist's discussion with pain doc and his denial of any correlation, I told neurologist, it just had to be related. I don't believe in coincidence. After 3 more revisions (total of 4) for SCS, and the eventual total spread of rsd which happens, especially after being diagnosed, then thru a bunch of successive surgeries; doc decided to try me on the pain pump. With my lengthy list of pain med allergies I've acquired Post-RSD, he ended up with su-fentynal and bacolfen meds combined.
Things appeared to be going fine (this is 3/03 by now...I'm a BWC injury..red tape and all); until 7 months down the road (10/03) after a simple refill led to a horrible spinal headache. ER in my city didn't even know what to do for me because of the pump. SIMPLE folks, help with the vice my heads in right now for starters...hahaha (wasn't so funny then tho). two weeks later, first available appt to see pain doc, doc looks under fluroscope and says, well, its revision time for you again my dear. the catheter slipped into the epidural space and meds leaked, thus giving me the headache. the best part was when he asked me why I didn't get in sooner. Like I had a choice in that. hmm. I decided I didn't want to go thru 4 revisions with the pump now too, so opted to have everything just taken out together (he was going to remove scs when revising pump). I thought my body just didn't like foreign objects being placed in it. RSD doesn't like foreign objects...not just me. I agreed (I know) to another pain pump implant back in June of this year. I'm not going to the other doc out of town any more since they've literally risen out of the cement the past 10 years. I've been positive with it, but not responding to morphine levels. Started out 95lbs in June, July, but in Sept, started with severe foot/ankle swelling that is now full leg swelling, and up to 125 lbs. Not so sure I can fully blame it all on the edema, otherwise I'd love to tolerate a pin prick to let it out...lasix isn't doing a thing. Cardio negative, except for some overinflated lungs on chest x-ray. I also had urinary issues immediately (i mean that truly) after pump surgery. Urinary retention..subsequent dx neurogenic bladder urologist stated directly related to rsd. had to go home from hospital with a cath bag. UGH. On flomax now daily, but still when last checked at urologist, have more than they would like in bladder after void. At same time, i was getting intrascalene nerve blocks for upper extremities due to severe pain (stabbing and tingling sensation both). The last 2 didn't work at all. In order to not focus on the pain, i try to forge ahead with my hobbies: ceramics, yarn work, and sewing mostly. Trying to make more handmade Christmas gifts this year (if I can sell any off FB page..even better). Naturally, the pain only worsened and I would swear at myself for being stupid for even trying. Dumb huh. I don't like just sitting and crying because that's what you do when you can't do anything to NOT think about the pain...you think about it. I don't know if I made things worse or not, but gradually, my mid back (thoracic) began feeling painful, that by the refill date of 10/20 I was hiding in my bed so my 23 y/o daughter didn't see or hear how bad I was. I drove myself to doc appt too. He didn't tell me that day (saw on BWC site) what his new dx was, but he told me that he would be scheduling me for a thoracic facet joint block/injection asap (BWC paperwork approved that is). I was in agony (50+ if there was a number like that) and it wasn't going stat. no word in a week, so i looked on website only to find out that the c-9 would be denied no doubt because of the dx he used. Not rsd (337.21) but something brand new not in my claim..duh...thoracic facet joint disease? Naturally, i searched to find out what it is and called managed care to tell her i know they will deny and what can i do to get approved fast. Rest is comedy of horrors like that, cutting to the chase, had it done Thurs; but didn't feel any numbness like previous blocks. Question is, with pump in (morphine and clonidine combo) and keppra on top orally; still no relief, why in the world would it not be taking care of my pain or any new pain/diagnosis? Anyone...anyone...(think Ferris Bueller's day off). Thanks for the help...I hope. |
I'm new to this forum and blogging.... so bear with me. I finally had my surgery last Thursday for my Boston Scientific implant. It's been 6 days and I still have a great deal of post-op pain at the incision sites. It's so hard to find a position that is comfortable. The pain pills don't seem to do much except make me sleepy and weird. My doctor just gave me Nucynta. I had such bizarre dreams and woke up feeling quite despondant. The SCS doesn't provide any pain relief from the surgery sites, and that's mostly what I'm feeling now. I keep hoping that anyday now I'll be up and Adam! Anyone share the same experiences??
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Hello luvdachsies
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So you have a Boston Sci SCS? What type of pain is the SCS treating? Upper extremeties? Lower? Yes, the incisions will be rather sore for awhile and using cold gel packs or ice will help, along with the post op pain meds. Does your IPG pocket site show any symptoms of infection? Once your incisions heal, hopefully you will feel better about your unit. It would be great getting to know more about you, so I encourage you to start a thread down below in the active forum and more members will see your post. We are a friendly crew and we do much to help each other as we wade through our challenges and 'victories' :) We are now posting up in the 'information' ('stickies') of the SCS/Pain Pump Forum. Come on down and start a new thread to introduce yourself and many will be glad to give you their input! When you first log in to the SCS Forum, you will see a 'New Thread' button at the top left part of the screen. Click on that and that'll get a new thread going! Caring Rae :hug: |
Post-op Pain
Hi there luvdachsies,
You're very welcome to our forum, like Rae said we are a friendly bunch that like to help and support each other through our good and bad days. We always have questions and someone might know the answer. At the moment you are feeling your post-op pain and this isn't nice but please God over the next few days and weeks you will begin to feel the benefits of your implant. A Dr once told me about a theory he had and that is your body only feels any one pain at any one time and this is always your worst pain... I guess all of us on this site could argue that one! :D Please do come back again and feel free to start your own thread. All the best, Sophie :) |
Paul, a forum reader only just now joining this one
I've noticed that many postings on different forums tend to have a lot of negative comments. Balance those with outcome studies and remember that people with positive outcomes tend not to post.
I'm scheduled for a SCS trial on the 30th. I am excited! I'm 59 with severe Osteoarthritis in my lower back. Shots and tramadol can't control the pain anymore. Only one surgery and that was a laminectamy to return strength to my right leg. Dr said it would not help with pain. It worked. Right leg got much better. My pain is in my lower back and butt spreading to my hips. Funny how it has never been in my legs. I have two friends with SCS and they love it. I didn't know this until after I learned I was to be offered one so they did not influence the decision. My biggest fear is "What if it doesn't work?". I'll happily accept 50% reduction in pain. I have only occasionally been forced to use drugs stronger than tramadol. Stronger drugs make me sick and fuzzy and I can't work. Some people withdraw from tramadol. I don't and I don't know why. I do hope I can ditch all pain meds after doing this. I do hope you have good effect. I'm hoping to return to a life more like it was 6 years ago. I still work but I don't volunteer with my therapy dog nearly as much as I was. I only go to the library now and totally avoid the hospital where I have to walk to far. God bless and let's pray for each other. |
Good luck Paul !
I had trial and implant a yr ago this month.. Wonderful and life changing !Ironicly my perm implant surg was jan 31 10 and my birthday is feb 1 63 !! What a perfect rebirthday it was ! I have ZERO pain from my debilitating siatica ! ZEEERRRO ! 0 ! The only time i had pain is when my SCS needed to be reprogramed and i had to keep it off fro 24 hours. Allmost instant return to a time I never wanted to recall . Only meds I take are 1 flexaril in am and 1 at bedtime. No pain pills at all not even tylenol !! God is good !!! And i thank him everyday for my new back ! There is very little iI can not do and that includes returning to work on full duty no restrictions ! When one yr ago i was forced to look into my med retierment benifits ! Again God is good and as I type this I smile and pray for you and all others who have the hope the SCS is right for them !!!! Thinking of you Paul , Chupachickie:)
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Hello Chupachickie!
It is SO great when someone like you comes along to share their success story! Thank you! There are certain people who are of the mindset that SCS is a bad thing, without taking into consideration that there ARE plenty of successful outcomes.
Congratulations on your newfound happiness! You rock! Rae :grouphug: P.S. my b-day is 1963 also :D |
Uh OH
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ooooooooooooooohhhhhh, when was I borned? Long time ago according to the color of my hair. Yup, Great Post Chupa! Mark56:D |
My bodys Factory Warranty
:)
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Ahhhhhh the Factory Extended Warranty Plan
:DFunny, you know, when I was MUCH younger, American Industry was proud of its creation. Warranted it against defect in material or workmanship for quite a while and things so often outlasted the warranty life..... Long ago and far away......
I remember when sellers of their wares first came out with the effort to sell consumers on the gamble of an extended warranty.... happened about the time the concept of American Industrial Greatness was washing down the tubes as we began to shift from one economic model to another, from industry to SERVICE as a foundational resting for the might of U.S. wealth and ingenuity..... Then I scoffed at an appliance sales person saying "so, are you suggesting to me your product truly is not worth the $2500 I am laying out for it?" Back pedal,,,,, back pedal..... went the sales rep. Now we come to the shadow of what America at one time represented, when the manufacturer of the M-1 Abrams tank was an American Company owned and based on American soil... thereafter taken over by a company based in some European nation which brought us into the last world war..... Yeah, mine is Boston Scientific, and I already had to have the remote replaced since it "wore out" two months beyond its one year "warranty".... so where does that line form for an "extended service contract or warranty" whatever the heck they are calling it now? Since my implant will come upon its second year anniversary in June, I had probably better run SCREAMING down to the nearest Boston Scientific "Buy Your Warranty Here" kiosk and lay out the $195price for a plan. :D Are the Boston Sci Kiosks in all airports, on every street corner, at the malls and such?:D Mark56:eek::eek::eek::eek::eek::eek: |
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Many Thanks Chupa!!
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Thank you Chupa, What a helper, what a helper, Mark56:grouphug: |
SCS Disaster
I am glad to see many people with the SCS that have been helped. For me it was a disaster from the moment I came home from the hospital. Every time I turned it on it stabbed my chest wall, gave me muscle spasms and electrical sensations going a across my skin.
My neuropathic pain worsened and then I just stopped using it. Went to see the doc, the tech was there and suggested a look see and one of the wires had migrated. That was because I vomited for 12 hrs post op. so I was told to use just the one side which was still in place. I only used it two more times, the pain became unbearable. I had spasms that would turn into shaking chills, then I would feel as if I was a furnace. The bottoms of my hands and soles of my feet felt as if they were being smacked into concrete. The sides of my chest were being sharply stabbed, the spasms were through my back, sides, chest arms and buttocks. Finally when I began having trouble walking the doctor removed the SCS and that was 45 days after the implant. Now it is 5 months later and all those problems are still with me except I do not have trouble walking. As soon as the unit was removed my leg strength came back. My NS and the anesthesiologist that implanted it do not know why this happened and do not know what to do. I have found many other people on other chronic pain web sites that have had the same problems, some are far worse off than me. Be careful if you are considering the SCS, it can be very dangerous to a small percentage of people. I am far worse off now than before the surgery and am getting no help from any doctors. |
So Sorry
For your outcome Dawn. Truth is there are good and bad outcomes to the approach just as with other life experiences. I am sorry yours was in the bad outcome column.
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Spasms!
I truly empathize with you having spasms. I've battled these since my migrated lead was taken out. I notice that they seem to simmer down significantly when I turn my unit off.
I commented on your other post, but didn't realize you were battling spasms on top of everything else! I'm truly sorry for what you've been through. Rae :hug: |
SCS muscle spasms
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It saddens me to know that the SCS can do such serious damage as this. Instead of hiding these issues, the medical community involved with the stimulators should try to find out why, so they can be prepared to keep it from happening. I will have to live with much more debilitating symptoms now. |
Wish I was a success story
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I sure wish you were a success also. I'm so sorry that it's gone this way for you.
Thanks for sticking around! I see you posting down below - you've got some very good input. It is very much appreciated. Rae :grouphug: |
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First I must admit that I have not read past this point. I have to take a minute and thank you for saving me the time in having to say the same thing. I hope I can groggle through some of the very kind fluff (for lack of a better word) and get some answers to some very serious, life altering issues, while sharing info and experiences I have to offer. I digress. Have a great day. :-) |
Just an FYI that I have moved all of these discussion posts to this thread from the SCS & Pain pumps - useful info & sites sticky thread. :)
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Hello Meestersgirly!
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So glad you came upon Neurotalk! You'll be pleasantly impressed with the amount of genuine care from others who know what you are going through. After you're done 'groggling through the fluff' :D (I'm gonna have to use this phrase), ask as many Q's as you'd like. It'd be great if you started a thread of your own, that way we can find you easier and all your questions will be in one place. Holler if you need help finding your way around. It's great to have you! Rae |
Btw, it's "kind fluff".
I know there is a large amount of sympathy and empathy around here. I think it is great. But between that and all quoted answers, it makes for a lot of "kind, fluffy" reading. If it was my personal story thread or something to that affect, then it is very much wanted and needed. But when an info thread is fluffy, I lose interest and try to find my answer elsewhere. Hope that doesn't offend anyone. :-/ It just is what it is. Thanks for the invite. Here I go to read, and read some more. |
Fluff
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Many posters here are mindful of both young and old struggling with physical pain being further challenged by the burden of mental health. Many have faced the mental anguish that comes with long term chronic pain by staring it down and denying it growth, others succumb and medical intervention required, and some use "fluff" in the form of the written word to aid them on the path to wellness. I confess, I am guilty of "fluff" I indulge myself and fluff here and there on the NT site. I apologise, I'm just a down right "fluffer". I don't get to talk about my pain or my quest for healing, no one I know in the real world as opposed to the online world has chronic pain. Yes, they have other illnesses, but they seek to have treatment and then they get better. I, we, go from one thing to the next in our efforts to "get better" we dream of it and we write about it, but we don't speak of it. Our loved ones are all talked out, they have been there and done this and that and they don't know what more to say. So I come on here and fluff about and someone replies and I experience a feeling of relief! others face the same uphill battle as I do, they have similar stories, they get me, and for a moment I feel normal. Just like one of my dogs who has just loudly fluffed. Perhaps a thread can be started that can be funnelled and settings set so that factual information only is recorded for future users to dwell on. Reason for SCS (describe condition in x amount of words) Lead or paddle Successful yes or no Length of time had it How many SCS do you have Recommend to others yes or no If no why - (respond in x amount of words) Not sure if it can be done, I agree it would be beneficial to others and with no offence taken an official fluffer. Phew, my dog really is on the nose today, it's one of those ones that winds it's way up your nostrils, binding itself to the hair and lingers on and on and on. The fluff that is, not the dog! |
good fluff/ bad fluff
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Here's the link: http://neurotalk.psychcentral.com/thread114143.html "Fluffing" :p is what support forums are all about. Many people come to these forums for support, care, understanding, etc.... Also tho, "good constructive criticism" is much appreciated and I do agree that factual information should be included in a forum, so I will point to such information with pleasure. :) This link which is up in the "Stickies" is LOADED with good information. No fluff whatsoever http://neurotalk.psychcentral.com/thread114142.html Luv & Hugs all around! Rae PS: watch out for that dog fluff!! It can actually BURN the inside of nostrils. At least this is what I get with my lovely boxer, Sadie! |
Pam,
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I understand someone wanting something as important as an SCS implant information to be as forthcoming as possible; but I have read many of your posts; all I see is someone in a lot of pain for many issues. NOoooo "fluff". There is the need to get some of our thoughts and feelings out of our system; especially to those who know what this awful pain is like. Although our loved ones do care that we are in pain; most of them really cannot understand. After a while, many of us feel a certain amount of guilt because we seem to be complaining to our family and friends too often. We certainly don't want them turned off by this. But.........isn't it nice to have someplace to be able to say what we are thinking/feeling, etc. Also, there are ideas/suggestions from others on how to better control our pain as well as ideas on how to tolerate and cope with it. We need each other. Gerry |
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Just wanted to let you know That was Great Thank you |
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and even his fluff Oliver is his name A silky terrier A 10 pounder |
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