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| | From:  chris441351 (Original Message) | Sent: 3/25/2008 10:49 PM |
Hello to everyone, I am new at this. Last month I was to have my 5th spinal cord stimulator in less than 7 years. I had new leads put in. Four days later the unit. I was not getting the stimulation I once had. All I was getting was stimulation on the sides of my torso. So the doctor said he is going to take it out. Has anyone had this kind of trouble not getting correct stimulation? Now the doctor wants me to have a infusion pump and the drug prialt. I'm not so sure about the infusion pump or prialt. Any advise? Stories? Thank you so much, chris441351 |
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Hi there Chris,,,,,,,, well no advice on or as to why..... sorry my dear,,,,,, Hope that someone has some kind of answers tho..... To help more... I have heard both sides to those... They did not try stimulator with me... I had 42 blocks to slow the rsd down...They did work..... They put in stimulator in for bladder. That did not help neither.... They did put in morphine pump.... recently added baclofin into morphine... WOWOWW,,,, now that is helped alot... stupid MS flares do not help at all..... Injections are happening now again ,,, this time alot different.... Last nite finally slept 5 hrs... I was dropped dead to the world. Finally...... rested. WOWOWW,,,, no pain rite now except in foot n leg really different.... At least now I can tell dr how burning n hurting.... Morphine pump cut alot of meds out... all depression pills went off of with it... since moving to TX here for me.... alot more went out also...... Hoping that some answers comes to you n for relief happening like is for me now... Took alot of trial n error here n different drs for me.... Alot different... But relief is on way here...... Monday instead of one injection they did two times... WOWOW,,, that one had not been done on me before.... So who knows,,, scarey part getting used to is do not remember anything after second syringe of medicine went in... Do not remember anything till that afternoon ,,,,,,,, and home sitting in my chair....... That was a first for me........ Hoping that you do have some relief... Thanks alot for posting..... Annie |
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Hi Annie, I want to thank you so much for your reply. It sure does help to have someone who has RSD helping each other, that is the best medicine one can get! I aslo have RSD of the internal organs. I started with badder problems. I had to use pads then I went diapers. I had three surgeries on my bladder. I got out of the diapers and went back to the pads. I believe it was my 3rd spinal cord stimulator and at that same time my leads came of f my spine. My doctor had no idea what he did, but when he put the leads back, all my bladder and bowl problems went away! As for sleep, I can't fall asleep on my own. I take trazadone and it does work for me. I've been to a sleep clinic. Nothing was wrong. It's been six years and I still can not fall asleep on my own. Thanks again for your reply, I feel better this morning hearing from you. Best of health, Chris |
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Hi there dear,,,,,,,,,,,,,,,,,, Am happy that you posted.. Welcome any comments that you may have or venting,,,,,,,,, or just get cobwebs out of brain.... No matter that is what we are here for..... Rsd is such a moster to all of us... Even the drs are not sure what too do..... Beleive me dearest,,,,,, I fully understand the bladder n bowel problems.... Having RSD n MS n 3 spinal cord injuries has left me totally out in left feild with that... Stimulator did not work for me. Wonder why.... strange one... O well... trial n error here will be with me rest of me life.... Mostly cause of spinal cord injuries tho... MS gives off the symptoms of bladder out put that is large unnormal... We are all dealing with sleeplessness,,,,,, spasms n things that are out of control in our body...... Wishing that non of us had too deal with these things.. Life is hard enough with out these extras..... I am sure we can agree on that also... Huggzzz hoping that today is as is pain free as is possible.... Huggzzz Annie |
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Hi Chris...my name is Diana....I wanted to thank you for your bravery and strength and honesty....I've been having bladder and bowel problem's since shortly after I fell and developed RSD....And of course I get treated like I'm nuts...But you just validated one of my symptoms and I wanted to say thank you to you for that......Big thanks Chris....Diana |
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| | | From: MaryMac | Sent: 3/31/2008 1:44 AM |
My Dear I could bet you nearly 100% that I no what the problem is please read this carefully and as your pain MD to first do or think of these possibilities.. The same thing happenend to me and I was so freaked out since in my case I was temporally paralyzec on my left side. I no your going to think I'm nuts but I litterally figured out the problem from one of the dumbest sciencefiction movies that I had seen one particular night and I had spent nearly 10 hours that very day in a E.R. because of this awfuly problem with my stimulator and they just sent me home...So the next day before I called the pain centers I called Medtronic explained to him the problem and he told me exactly what the problem is he said it is call a "Electronic Leakage"... In my case the wires needed to be removed... In your case they may just have to open you up slightly and MOVE the wires gently up or down and REPROGRAM the computerand it will probably get corrected immediately... OR the stimulator may need to be tested since by some freak chance it may not be putting out enough power..... OR believe it or not your mouse may be having a problem with sending the correct pulsations... PLEASE check out all of these since I gaurntee you it is most likely one of these issues and is very fixable... One last thing it too may be possible they may have not connected the wires or a wire may have fallen out in your battery that can all these things can be seen with a simple x-ray... Please don't give up on this and don't let your MD get lazy on you and just go for the simple way out...Trust me when I tell you this one of these things are most likely the issue If you don't believe me call Medtronic or where ever the stimulator was made they will give you the correct answer immediately... Good LUCK I know you'll have great results, Sincerely MaryMac |
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Hi Diana,
This is Chris responding to your reply to me. RSD can cause many things to go haywire. RSD does effect the sphincter muscles. You do have these muscles in your bladder,anus, eyes etc. I do believe you have RSD of the internal organs. For five years I had stressed to my urologist it was due to my RSD and finally he agreed.
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Dear Marymac,
Thank you so very much for your input. You know, I never gave that any thought! My medtronic prep was going crazy trying to get it right.
It sure does make a lot of sence to me. I will discuss this with my doctor.
Best of health,
Chris
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Chris...Thank you so much....I do believe your right....I got a new med last month....it's a prescribed laxitive....and wow...lmao....I've been so full of crap I can't tell you....lmao....(sorry folks)....lmao...anyway....I take less than 1/2 of what it say's to take....and it's some powerful stuff I tell ya....it say's Polyeth Clycol on the bottle....and now I can feel it when I have to go and I'm not wetting myself anymore....but now I got another symptom per say.....(gosh this is embarrasing)....ok....(takes a deep breath)....just gonna spit this out.....been bout a week now....my insides and my left thigh are (gulp)....feel like I'm stuck in orgasm mode....is that nuts or what.....well you'd think it would be pleasuaresable....but it's not....nothing like standing in the line at the post office....having an orgasm all the way down to my thigh....(shakes her head)....I swear I've lost it....lmao....dunno if they got a cure for that.... ok...goin to bury my head in the sand now....anyway, thanks so much Chris....xoxoxoxoxoxoxox....Fire....aka..Diana |
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Dear MaryMac, My name is Chris with the spinal cord stimulator problems. I went to the doctors today. Well.....todays visit was to talk about getting an infusion pump But!! after 5 stimulators and the problems with the 5th one, they are thinking of trying to do it for the 6th time. This time they will put in a single lead. Doctor doesn't seem to think its a leakage. So, if the 6th one doesn't work then it will be the infusion pump! I'm tired of getting surgery on my back it has been two months since they removed the 5th one and I'm still recouping from it. I just don't know what to do anymore. I am not affraid of dying, I am affraid of living!!!!!!!!!!! Best of health, Chris |
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Hey Chris...... Am so glad to know that we are helping n can be here for the support.... I had no idea of rsd affecting the organs like this... I have the same problem,,,,, always put the blame on ms,,,, drs let me... Well with new drs here,,, help is slowly coming. But now having drs who are trying to help,,,, n looking at different things,,,,,,, am going too check into this one... When Ne. gave me the botox injections last yr.. that was the most n best relief that I had had. Since moving to Texas now,,,,, in no way able to get them here.. Stupid fda n rulings n ideas,,,,, stupid stupid stupid fda.. We the people do not put stop too fda stupidity.. I wanted too mention also,,,,, I am thinking also that our meds are suppose too be making us drowsy n sleepy ,,,, that we take so many of them all,,,,,, that they will not let our body slow down or rest..... The meds goikng into over reacting n keeps us going.... Found a combination of supplements that do help alot... REMEMBER, supplements we need to keep taking , the meds deplete our bodies of needed nutrients that is needed to keep us going.. You being so young,,, will affect you harder n worse than us ole foggies!!!!!!!! So please know that we are here to help in any way possible. Huggzzzzzz Annie |
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I came across this post and it was a great intrest to me. As I am currently talking to my doctor about go thru with the SCS (ANS is the company). I'm still nerves about doing it but, mostly what I hope to get out of it is to at least get off of some of my medications... I also saw on here people commenting on urine leakage and fecal leakage ( sorry I know it's nasty to talk about but, I'm curious)... I've never had either one of these problems until I had RSD... On a good occassion I've had urine leakage and well, I'll be honest I'm embarrassed and I don't like to let people know. I just wear a pad and go about my buisness. Now the really gross part. The other end will also leak on occassion, now I have told my family about the leaky pipes and I do the same thing. I wear a pad and go about my buisness... My thing is I don't even know I'm doing it. It just happens and it's 10x's worst if I take my laxatives. But, If I don't take them I can't and wont go to the bathroom and I mean for over a week. I talked with my doctor about this and he said I can't let it get like that cause I could have a serious internal blowout and then I'd end up wearing a bag. Is there any truth to this? My main this was.... I know I get off track sometimes... Does anyone have an opinion on the SCS? I think I will do the trial to see if it's right for me and if it makes a noticable difference. Actually if all I get out of it is taking less meds I may do that. Just because of that. Thanks, Michelle |
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Michelle,
Your problems with bladder and bowels is exactly what experienced.I started with the pads then the diapers. I could not move my bowels on my own, had to use laxatives. I found out I had RSD of the internal organs. It has to do with the sphincter muscles being atrophy.
I also had a SCS when the leads fell. Had surgery and my problems went away! No bladder or bowel problems. I discused this with my doctor, and he said he must had put the lead on a nerve and it stimulated the nerves that controls the bladder and bowels. Med tronics makes a stimulator just for the bladder too.
As for the scs, I love it. I do like my stimulation on high. Maybe that is why I had 5 SCS less than 6 years. The meds were used less often too. Also I could be a little more active. I had surgery to replace my dead battery, and four days later they had to remove it because I coud not get the stimulation
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My dear,,,,,, Rsd is letting us all have our problems with bladder n bowels. I am not posting to much on this as I also have MS,,,, which creates alot more issues with bladder spasms n leakages. Not any fun at all. So very sorry that I cannot be of more help... I certainly will say this one,,, worse our pain gets the more we let use.. And more frequent the accidents happens.. Worse kind of embarazzement we survive.. I hate it all. No worry any one,,,,, it is certainly ok to be angry about all of this...As our bodies were not designed too function this way at all. Not at all. So angry,,, yes,,, go ahead n vent!!!!!! Cause all the venting n screaming n hollering,,,, can bring answers faster for us ,, one n all. huggzz hoping that all have a great weekend!!!! Annie |
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