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Problems with Neurostimulator

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Posted 9/27/2008 7:57 PM (GMT 0)

PALady, thank you!  Always good to hear from you!

Best of luck to you, Geeja!

Posted 10/6/2008 10:22 PM (GMT 0)

:-)  Hi, this is my first post.  I am so happy that I found this site.  Chronic pain can easily alienate a person.  This makes me feel not so alone.

 I found the site doing a search for "neurostimulator problems".  I am scheduled for a trial the 29th of this month.  I have been reading a lot about the leads moving, that seems to be a big problem.  I was wondering if anyone who has had that problem had to wear any type of body brace.  My doctor says I'll have to be in one the entire trial period, then 8 weeks after the permanent implant, if I decide to do it.  He said that the brace would help keep the leads from moving.  

Posted 10/7/2008 1:36 PM (GMT 0)

Wow, I never heard about the brace!!  That sounds great!!  Best wishes, and I wish you all the best!!

I had a failed surgery with mine and I'm still suffering, and I didn't even get the darn thing placed, they had to stop!  So, just educate yourself, know that you are sure, and talk with this loving CP family!!  They are wonderful people, I just haven't been on the site much because of my pain.  I am still thinking of going through a second surgery to place the stim, but I'm still unsure!  I think it was the helping doc that screwed things up in my procedure, well, I KNOW that it was, he just denies that it happened, like I wasn't there, but that is why I refuse to let him touch me again!  So, know your doc VERY well too!  Be comfortable with him, and be able to TRUST him!!  I wish you all the best!

And I want to thank my family, they have been there for me through a lot of my deals the past year, and I really am appreciative to know that you are all here!  I'm sorry that I haven't been around, but it's been really hard for me lately!  So sorry!  But, I will try to at least post a little more often!  You guys are great!!  tongue   Thank you!  smilewinkgrin

Posted 10/7/2008 4:05 PM (GMT 0)
Dragoness,
i'm so sorry to learn you've had this bad experience. Like you didn't have enough pain?

Anyway, it's good to hear from you even if it's only periodically. I hope you continue to heal from the surgery and maybe can find another direction or doc.

PaLady
Posted 10/7/2008 6:25 PM (GMT 0)

PALady, you are so caring, thank you so very much!!  I am still just at a loss, I'm so broke, I'm in pain, I can't work, and I try SO hard to stay very positive, which I have been doing... but there are some, well, times, maybe just even for a couple moments, you feel really down cry   because you don't know where you are going to get the money to be able to put some food in your house, or when!  And God, don't even get me started on medicine and insurance, ok, I'm done, LOL!  That is what has really been making things hard though!  And I'm still healing from the surgery as I mentioned, which is going well, but my pain meds just aren't cutting it anymore, and I just hope that it's not worse from being aggravated during that botch surgery!  confused   shakehead

idea  My Mom just bought me a book, it's sort of one of those mind over matter books, where it teaches you to relieve your own chronic pain!  I want to read it and see if there are any techniques that I can share with my CP Family!!  smilewinkgrin

So, as always I appreciate your help and support, and also keep you and everyone in my thoughts and prayers!  But, I really want to know HOW HAVE YOU BEEN!!!????  yeah I hope you have been having many low pain days!!  :-)    And I will never forget our poor Wilson's!!  LOL!  turn   I will try better, to come on the site and talk to everyone again!  I guess, I have just been a little in my own world with all this paperwork, legal crap, doc visits, and phone calls, etc!!  I apologize for that, but I have not forgotten ANYONE!!!  tongue

Thank you!!

Posted 10/8/2008 1:19 AM (GMT 0)

Dragoness,

Thank you for responding to my question. I hope others will let me know if they have been offered a brace.  All of the poor folks who had their leads move and cause them so much pain just breaks my heart!  Everytime I read one I just keep thinking, "Would the brace let the leads move?"  The doc. told me that the brace would NOT let me move in any way that could pop  a lead.  Sit, stand, walk, or lie....that will be it for me for 8 weeks.

Can I ask another question that I probably don't want to know, but I don't want to get any bad surprises in the OR.

I know I have to stay awake for the implant, how painful is that going to be?  Be honest, I can take it eyes .

I am going to pray for everyone on this site tonight.  We are all in this CP thing together. 
Thank you again.

Blessings,

Mel. (baskets)

Posted 10/8/2008 4:25 AM (GMT 0)
Dragoness,
Thanks for asking! I'm doing so-so. The money thing is big with me, too. Maybe we need a thread "broke and in pain". And I know it adds a ton of stress, tension and, therefore, pain! smhair

I applied for a job. (see my other thread). I think I may be crazy. shocked I miss the Wilsons and the beach party, too (and anyone reading this will think we're ARE crazy!). No need to apologize for being in your own world. I know how complicated and overwhelming it is to try to keep it together with bills, forms, legal stuff, and medical. I can't believe the government didn't extend unemployment insurance, but I won't go there. No politics here but I wish someone would bail me out!! mad

I'm off topic for this thread. I'm off topic tonight, period! smilewinkgrin

Take care of yourself!

PaLady
Posted 10/8/2008 11:21 AM (GMT 0)

Hi Baskets!!  To answer your question, yes, you do have to be awake in the OR, and the usually give you enough pain medication that you don't feel anything, but the stimulation!  So, I wouldn't worry too much about that!!  They do local blocks, and IV pain killers, you will do fine!  I pray that you get the relief you need with the stim!  The trial drove me nuts, because I kept having to tape the device back onto my back!!  It kept falling off, and the stitches were itchy as heck, and so was the tape, so I was SO miserable, the WHOLE week!  Maybe this brace will really help you, keep everything where it needs to be, so that you don't have the itchy horrors I've had, and the problem with the device always hanging on by a piece of tape, pulling on my back!  LOL!  So, I seriously hope that this brace will eliminate all of that for you!!  Best of luck, and I will pray for you that things go well!! smilewinkgrin

PALady!!!!  I'm always so glad to hear from you!!  Yeah, looks like we are all struggling together, huh?!  That would be a GREAT IDEA for a new thread!!  idea I will have to come back later on and check in for it!  Right now, I'm awake and I usually am sleeping at this time!  I have this thing where I wake up every couple hours, for a couple hours, then I go back to sleep!!  LOL!  But, I hope that you have better days coming ahead!!  All I can do is try and stay positive!!  Someday I will get some sort of income!!  :-)   I think that, that is the most frustrating and stressful thing, to wonder where you are going to get some income, when, and how!  They make it too hard for people in our condition to get paid, you have to wait forever, and they don't have a thing you can do in the meantime!  Oh well!  Yeah, I agree, who is going to bail us out!?!?  But, you are right, that is a HUGE topic, politics, and I don't want to start there either!!  LOL!  No problem about being off topic, that was my fault!!  LOL!  I will have to come back in a little while and check for other posts and see how things have been while I've been gone!  :)  Ok, well, thank you for being there for me!  I have you in my prayers, and I hope that you have some low pain days!!

I have everyone in my thoughts and prayers!!

Posted 12/27/2008 6:00 PM (GMT 0)
Well I'm back......I had the 1st surgery on Dec.9,2008...........a couple days after that when I would turn on stimulator ..it was vibrating on my left upper chest area..suppose to be lower right abd..groin area and right inner thigh....I was freaking...went back to doc for checkup and he said this was impossible..well took xray and apparently the titainium brace broke and half the leads went to left side of spine..he said this has never happened to him before..the brace must have been defective he said...sooo surgery #2 was dec. 19th..repositioning the leads and he also stitched..glued and then stapled me closed.. You know I am scared now..I lay in bed at night and knowing I am going to lose my job ( factory..huge magnets and machinery) I am scared...also about what I cant do anymore..safety things..yes this is going to help my pain but doc said I cant twist,bend at waist etc....I have dreams of losing my programmer.. I really need to talk to people who have this and tell me any precautions they have to do ? My mind is just so confused...I go back to doctor on Dec.29th to reprogram and check up..a little too much vibration in upper right ribs...I also have alot of spinal jolts when I am up and about doing normal things..Doctor said it could take up to 3 or 4 months for tissues to grow around wiring by my spine..Med tronic rep said there was a possibility that may not go away..I dont think about that until I am walking around and get jolted..doesnt feel too good..Can anybody please tell me their experience's with this? PLEASE? I go to the medtronic web site and they just have very minimal info !!  Please some one help ease my fears..thanks..geeja....email [email protected]

Posted 12/28/2008 4:54 PM (GMT 0)
I've read each of your posts my CPers and my heart goes out to each of you that are suffering trying to grasp onto some relief from the pain that you suffer each day. Two years ago I was told by my doctor that a Spinal Stimulator would help me with my pain as well. This coming after another denial of the same course of treatment 6 months before where the Psych said I was not a candidate. Now what I don't understand is how in the heck a Psychologist who specializes in pain can tell a doctor who is and who is not a good candidate for any procedure. I mean they are not doctors right? But yet they decide who gets these! Anyway because I was in a foul mood at the time of the second Psych exam and mourning the news that my Nephew was dying from lung cancer the Psych decided that I was not a candidate at that time BUT that if I went through several things (IE: pain counseling, biofeedback and a few other goodies that they deemed necessary) he would consider the stimulator being a viable option later on down the road.

Workers Comp saw this as a denial and refused to pursue it further. Now...here is the kicker. I have been told by my claims adjuster that because I have it on my records that I have DDD (degenerative Disc Disease) that the Stimulator is not worth trying even though every pain doctor that I have gone to says that it would relieve most or some of my leg pain leaving me with my back pain and hip pain to self medicate and deal with on my own, which I can do with some aleve or tylenol as its not so bad. I spoke with a State Senator that is heading up a project to revamp Workers Comp in Wyoming and after several emails with her and telling her my story she has assured me that my case is exactly what they are trying to revamp. This I do not know whether to believe or think is crap but,....we shall see.

Now for my present situation: As of my last visit, we are proceeding forward with the stimulator and I am in that place where I am not going to get my hopes up. It's been two years since my last Psych eval and I just will not hope for a psychologist that hardly knows me or my situation to fairly judge what I am going through to come through with the proper decision on what I feel is the rest of my life in his hands. My sister-in-law has the Stimulator in her back after being hit by lightening some years ago which fused her entire back except for two spots. They were forced to go in and fuse those spots and she was almost to the point where she would have been in a wheelchair the rest of her life if not for the Stimulator. This machine has been a god send for her and recently she had gallbladder surgery. She refused medications after the surgery and only had them stand her up so that she could turn on her stimulator which they did and was fine.

Now I realize that she does not get 100% relief because she has told me this but, she is getting enough relief that she can and is back to work as a nurse in the ICU ward of a local hospital here in KS. I myself, do not expect miracles, but even if I got 30% or even 20% its better then sitting at a 10-8 every day right? I mean I would rather be sitting at a 7 or a 5 then what I am dealing with right now. I hear some of you complain about the stimulator even though you are getting 30% to 40% relief and I have to wonder if you were not expecting more from this procedure? There are setbacks to everything we as Pain patients try, each of us know this, but we all know that even one day going from a 8 in pain to a 5 (by the way I have not seen a 5 in three years and a 0 in 9) is a remarkable change that shouldn't we enjoy?

Just my Opinion. Hope you have a great Lessen Pain day. :-)

Scarred
Posted 5/25/2009 2:53 AM (GMT 0)
Hello everyone... I had a permanent Medtronic Neurostimulator implanted about ten days ago. I believe my left lead has migrated. The paddle leads were sutured in. But as of this morning I feel the left lead stimulating down both legs and I need to turn the intensity up higher on that side. Can anyone tell me what is involved in repositioning the leads?
Thank you....
Posted 5/25/2009 10:00 PM (GMT 0)
Roby,
Wecome to HW and the Chronic Pain forum. I am reasonably sure that if the leads have migrated, that they will need to go back in to reposition them, especially since you have the paddle leads. First, they can do a simple xray to check the positioning. It may be that scar tissue is starting to form and is in contact with the paddle leads, so you might want to discuss this new lack of intensity and having the stimulation in both legs from the left lead with your representative from the company who makes your stimulator, and see if they can adjust the settings to fix the lack of signal strength first.
Your surgeon and representative can give you more specific information about what they may have to do to fix the problem. I hope it is only a simple adjustment for your sake.
Sandi
Posted 7/13/2009 3:11 PM (GMT 0)
Hello, Im new to this forum. I was searching about the neurostimulator and found this site. I have the trial set up in 2 days and i haven't read anything about someone with a damages unlar nerve having one put in. I was in a car accident over a year and have been being treated for pain for the past 6 months. No painkillers help. So Advanced Pain Management said they would like to place this stimulator to help with my unlar nerve pain. Im 24 years old and have more doctors than my parents. Just wondering if anyone has heard about the stimulatr helping someone with arm issues or nerve issues in the arm.

Thanks for your time and hope everyone heals well

Lycan
Posted 7/13/2009 9:51 PM (GMT 0)
I have a friend that had two stimulators implanted. One in her lower back for the area that included her hips to her feet. The other was implanted in her upper back and that was suppose to cover her arms, neck, and torso. The SCS's were implanted at a national teaching instiution by the Chairman of the Department of Pain Medicine. So I feel the implantation was most likely done with a knowledge a what the SCS's were capable of doing and were probably positioned properly. Who ever knows. Anyway, she never acheived relief from the upper SCS. She continued to have pain in her arms and back. This is the only person that I know of the ever tried to surgically use the SCS for that type of coverage. She ended up removing it.

Good Luck.
Posted 7/14/2009 2:14 PM (GMT 0)
I know several people that have cervical SCS implants specifically for shoulder and arm pain, with no coverage problems at all. :-)
Posted 9/12/2009 2:56 AM (GMT 0)
 

Hello out there, dl here again, the last time that I posted, a month or so ago I was at ends with my unit.  July 30th it went ape and started turning on and off y itself and I could not control it a bit.  After much interjection with the tech and changing out hardware, panels, wands, chargers and so forth, today 9-11-90 they have decided that the battery has shot craps and they are going to change it out.  Everyone including the surgeon states I am a new case and wow oh wow.  I really wonder.  Who else out there has had to have there 5 year warranty battery changed out only after 6 months and 4 days?  I only hope I am not over come by people writing back to me and saying yes mine died too.  Give me some feed-back if any is out here. I am scheduled to go in next tuesday for the change out.    Thanks.  dlt 

Posted 9/12/2009 3:48 AM (GMT 0)
DI, I will wish you good luck in getting things worked out with your scs, my pt says
a scs would be good for my lower back, but I will hold off on that for awhile...
Hopefully they'll get all the kinks figured out and fixed with those scs....
soft hugz to you and well wishes....
((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((dit)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Posted 9/12/2009 8:57 PM (GMT 0)
Sorry to hear about your troubles. I've had mine for nearly 4 years now & haven't had any issues like that. I have heard about other people who've had that issue, but haven't met anyone in person. I think there was someone in this forum who had to change her battery out after less than 2 years due to high use & the battery dying & not being able to charge, but that's about it.

I hope everything works out for you & this round you get a really good battery.

take care,
Frances
Posted 9/12/2009 10:28 PM (GMT 0)

Thanks for reply Frances-2208 & charteux,Got my call from my surgeon yesterday at 2;30pm for my date this coming Tuesday for the battery change-out and not 4 hours later my unit just quit period, life in the battery finally gave up the ghost.  No real big thing as for as trouble except for another unwanted surgery.  They will find out afterwards just how much I disliked it leagelly, hard to do , but doable just the same.Worst thing is that I had been telling my tech that the unit had started feeling HOT when I was charging it and she passed this to 1 peg up and told her nothing to worry about on July 28th.  So much for letting people now in advance that you may be having a problem, and what can we do now instead of 45 days later after it stops working.....Makes you wonder who is minding the store over all of these peep squik tecks.I am 60 plus, but that does not make me stupid, least wise not all of the time...ha ha   This unit has helped me alot though all kidding adside, finally got off drugs after 25 plus years.  I know one thing for sure that I can tell most people they don't know and that is which drug knocks which bodlily function out your usage.  As I am sure all out there know it too.  I found out to late about Lipitor and the darn cipro.  Cannot remember anything from one days to the next and I have a bad rotator cup from cipro, both proven.  Kind of makes you feel like a guieaa pig or what ever that furry little pig thing is called.  I try to stay happy, it is all I can do.  Lost my a/c buss. I had and ran for over 35 years, cant compete when I had to start laying off workers and paying out by peice work.  No good workers anymore that will work.I have my fair share of horror stories from surgerys , but I have never heard of anyone before wearing a brace for this procedure.  I wore one after L45 rework and stiill wear it sonetimes when I feel bad.  To good to toss out.  Sorry also to hear all of the stories from you good people just like me who have done worse after and during your procedures.  The only thing I learned from my first C345 chain was to follow the darn drs. instructions and sometimes it is hard to do, but if you do not it usually does not turn out well for you...Got to go for now, Tx. is finally getting rain and now it does not look like it wants to stop.  No rain for 10 months and now a twiriling front from our gulf that just keeps coming and going around 500 mile path around and around.  Needed it, but too much is too much..  I will stop back from time to time and maybe some of my experience I might be able to throw into the mix.  Good lives to all...dlt 

Posted 9/20/2009 10:35 AM (GMT 0)
hello folks, again have a working stimulator .  Did not realize just how well the thing worked until I went without it again for the last 2 weeks.  Surgery was alot easier the second time around.  Just had to change out battery and reposition the unit higher up in my back.  They had placed it too low and my belt ws riding on it.  The other good thing was I was given a different pain drug I had never taken yet.  It is winner for anyone out who has not yet tried.  It is called ultram 200mg.  It is a time release tablet that works for 24 hours and has not yet made my stomach upset and controls my pain very good.  Weirdest thing is that it has aiding in lowering my blood pressure.  Dr. is not sure why, but why not.  Pressure pills only make me sick and give me ED.  Dont like the sounds of viagra and the others, too many side effects.  My unit was an obvious fluke, cause this new battery works a hell of alot better.  Still not sleeping well yet, only been 4 days, so sleep can wait a while yet.  No Pain again is what I was shooting for.  Rain has finaly slowed here and fall is in our air.  Awaiting some cooler weather with much excitement.  Everyone try to stay well and have a good one today and a better one tomorrow and so forth.  Thanks for aid.  dlt  Texas
Posted 11/5/2010 12:58 AM (GMT 0)
My wife had her implant from St Jude installed 2 weeks ago, the problem she is having is that the battery/unit that they put in her behind seems to push out whenever she sits down and we think it should maybe put in a less "sitting" part of her behind.
Was just wondering if anyone else had experienced anything like this, I know the recovery is supposed to be 6-8 weeks and I am trying to figure if the behavior we are seeing is normal or not.
- I'm just reading "aliveso4"'s post and noticed that she had a similar issue -
Thanks
Posted 11/5/2010 7:57 PM (GMT 0)
MrGaunt you may want to start a new thread, this is a very old thread and I doubt you will get much of a response. Also, we like to keep all the posts no longer than 3 pages as anything longer tends to throw the server out of wack. Thanks for understanding.
Posted 4/11/2013 5:20 PM (GMT 0)

Hello everyone. Yes this is my first time posting and hoping to be here often. Here inlies my pain issue. Oct 12 th 2002, while living and working for U Haul International in downtown  Phoenix, i suffer, as the doctors call it, a major, CVA, AKA Stroke. Afterwards, not being able to move my right side, i decided to come home and recover here near my family in NY. Well, little did i know, at that time, the reason for my stroke was all my doing. At 400 pounds what had i expected. If i had known that Az had a clue as to what gastric bypass surgery was, maybe i'd hae stayed. However, knowing that my brother, an MD.  knew doctors that performed gastric by-pass in new york so, as of now i have gone from 403 lbs to an astounding 213 lbs since lasr check-up. Sadly, i never returned back to work, they had no use for me. I had gone thru the trials for the stimulator and it seemed to work. We are now in, 2013 and i flatly refuse to return back to this, (butcher), doctor who installed it again. I have an appointment in Manhattan with a neurosurgeon who thinks that the leads, wires, whatever the medical jargon may be, are truly screwed up. I am praying that it is a simple fix, yet, when is surgery ever a simple fix. It is again, April 11 th 2013 and my appointment is not until the 25 th of this month. I promise to keep youy guys informed and baskets, if you live in or around new york, i'd be more than happy to gove you this surgeons name. He is at Mount Sinai in downtown Manhattan. Hope i have shed sdome light RE: stimulator.

PEACE TO ALL

JOE PALUMBO

stroke survivor 2002

Posted 4/12/2013 2:38 AM (GMT 0)
Hey Painsmyname,

Welcome to the CP forum of HW..... however, this is a really old thread. We ask that new members start a new thread and "introduce" themselves; that way - we are all able to welcome you..... If you'd like - you can just cut/paste what you've written here into a "new thread"......

Let us know if you need help :) --Tina
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