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Thread: Stimulators

  1. #1
    Junior Member PixieGirl's Avatar
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    Stimulators

    Hello Everyone...I am scheduled on the 26th of this month for a one week trial procedure for a stimulator. I was just wondering if anyone out there has any information for me regarding their own experiences or any knowledge you might have about Stimulators. Thank You to All of you who read this .
    PixieGirl C 567 9-30-10

  2. #2
    Junior Member PixieGirl's Avatar
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    This is where my ignorance steps in and my Doctor is tight lipped.
    I was only told that he thought i was a perfect candidate for one.
    he failed to mention the type nor did I know to ask.How many
    different types are there? Thanks smashms for the reply.
    PixieGirl C 567 9-30-10

  3. #3
    i hope your'e not serious, I'm almost hoping this is a troll. Having a spinal procedure and the doc won't tell you anything? get real.

    btw search on them they get mixed and bad reviews along with serious long term issues.

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  4. #4
    I had a bladder sitmulator implant 40 years ago that never did work. Doc told me the same thing about being the perfect candidate, don't believe any of them and do lots of research!
    From the time you were born till you ride in a hearse, there is nothing so bad that it couldn't be worse!

    All fringe benifits must be authorized by Helen Waite, if you want your SCI fixed go to Helen Waite!

    Why be politically correct when you can be right!

  5. #5
    Junior Member PixieGirl's Avatar
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    I'm not sure what a "Troll" is bollen..but I asure you,I do not live under a bridge. I was unaware that there are different stimulators for didnt areas.Thank you for that insight Oldtimer. Like I said I am new to all this and have yet to accept or understand.(C5,6,7).There is still a fog that surrounds me that makes the simpliest of tasks difficult for me to roll through my daily routine. The Stimulator I am scheduled to have is where leads are implanted under my skin just above my spinal cord. Mine will be implanted in my lower back.I will have a remote control which I can adjust to alleviate pain in different areas of my body. I apologize for the confusion. Thanks smashms,bollen and Oldtimer
    Last edited by PixieGirl; 01-16-2012 at 12:20 PM.
    PixieGirl C 567 9-30-10

  6. #6
    Always, always get 2nd, 3rd, 4th, 5th etc. opinions before you set your own mind. It is your body, not the doctors and they have nothing to lose, you may. Please, think everything over good so you have a clear understanding. Surgery is surgery.
    From the time you were born till you ride in a hearse, there is nothing so bad that it couldn't be worse!

    All fringe benifits must be authorized by Helen Waite, if you want your SCI fixed go to Helen Waite!

    Why be politically correct when you can be right!

  7. #7
    There are people out there that just go to doctors and do as they are told. I was lucky enough to have a Doc who was honest and frank with me. Ask many questions, over and over. Are there truly those who would come to a site like this and pretend to be injured, and o my damn why?

  8. #8
    Hey pixie, a troll is a one time poster or antagonistic poster. Someone from medtronics or involved with them or whatever, starts a new profile every few weeks discussing the miracles of Spinal STim and medtronics.

    Considering how few of us here who have them have had positive results I worry about stim posts, keep the trolls out and for the real ones, for your own good read every post on them here.

    From lack of efficacy (positive outcome) to life threatening infections to serious implications such as no more MRIs the single most effective diagnostic tool for SCIs.

    I have one, and not only did it never work past the initial trial including multiple revisions, pulling it loose and finally having it sewn in, when I had an issue that needed an MRI I couldn't get it. My surgeons will also NOT remove it. After more experience, they are extremely concerned that with the amount of time it is in and the scar tissue around it they will likely do severe damage to actually irrepairably tearing the dura.

    I would really suggest you become much more proactive about this. btw I was not a member of this board when I got mine, wish I was and could see other folks experience. I believe i was really deceived about them and therefore easily pushed into a non-reversible situation.

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  9. #9
    Junior Member PixieGirl's Avatar
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    I agree..I should have a 2nd opinion or even a 3rd 4th and so on as you sugeest Oldtimer. I think evtrala you got lucky when it came to the doctor department. I am green with envy. I dont know either why or what would make someone want to deceive those of us who are really looking for answers and reaching out to others for insight.People now adays..some have hidden agendas.
    Thanks for the lesson in Troll 101 bollen.I guess from what you said its a SAD reality and it makes me sick.So...as far as your stimulator went..correct me if I am wrong..yours worked so you had it surgericaly implanted?Im not clear when you mentioned that it was getting pulled loose.Was that during the trial? Can I ask a little bit more about your injury and what were you trying to accomplish by getting your stimulator.I guess in my case..when I was told I was the "PERFECT" candidate everything else around me went silent.To go through my day without pain.Without my feet feeling like cement shoes.No more knees feeling as if they got slammed in a car door.Then the best of all..not having my A$$ feel like it was on fire was like winning the 32 Million Dollar lottery.For me..even though I am paralyzed from the waist down,I have COMPLETE feeling and slight movement.at first I thought..WOW what a blessing to be able to still feel everything..which dont get me wrong it is without question.However it makes life close to unbearable and my pain meds DO NOT work.I hope you can see to why it is I jumped on that band wagon unknowing to what is to come next.The date is fast approaching.I have waited months for my insurance company to approve this and now I am filled with excitement and doubt. Thank You everyone for your opinions and suggestions.I want you to know I appreciate your willingness to help me.I have started doing research and plan on asking questions.To be honest..I have not cancelled my procedure yet. Have a Great Wednesday where ever you are. Will keep you posted.
    Lorraine
    PixieGirl C 567 9-30-10

  10. #10
    I'm an incomplete, injuries at T6-9 and L3-S1, fused L3-5. Ambulatory, foot drop and weakness more on the right than left, Hvae B&B with occasional hiccups, loss of control.

    I have Central Pain, Neuropatic Pain, nociceptive pain and radiculopathy (if not covered already) extreme chroic pain across my sacrum, Burning ass, Sciatic and peroneal nerve branches damaged, crushing foot constant sciatica, constant burning and shards of glass ripping alonf the peroneal system, undiagnosed tone and spasticity primarily on my right. spasms from shoulders to toes.

    Pain bad enough I vomit frequently and will pass out when it reaches its max.

    Had the stim trial. while in the hospital for the initial insertion i had reduced sacral pain and smal but meaningful nerve pain relief.

    Upon taping me up for the three day test they said I'm perfect. 1 day later I was in the docs office with a horrific infection and dermatitis reaction of some sort to something, they immediately took out the stim. But again confirmed I was perfect candidate.

    After 6 weeks they put it in permanently, stim inserted from sacral area up, box left of my spine on the left. Medtronics tech tried to dial it in for 5-6 successive weeks - bi weekly, no efficacy. Xrays "suggested" the wires moved. Extracted replaced. same thing, retracted but inserted via a partial laminetomy at the T level and sewn in to prevent it shifting.

    Spent 3-6 more months trying to dial it in and gave up. The doctors did not want to remove it said give it a rest and retry, so I did. Nothing. Dccs said leave it and avoid any extra surgery to remove, but could be extracted anytime ...no problem.

    2-3 years later a cervical complication requiring an MRI OOPPPS Stim can't do that. Neurosurgeon said he can't take it out, they've turned out to be extremely problematic and removal and disruption of the extensive scar tissue had caused paralysis and torn duras with catastrophic results.

    So they tried a Myleogram but the dye would not go up the spinal cord due to the extensive scarring, so they said they get a top down injecting at the base of my skull so the dye would flow down normally. No doctor between Boston and Washington DC was willing to do this type of myleogram. With the aadvent of MRIs no one had enough experience they would do it as it is very high risk.

    No pain meds work, narcotic or the nerve oriented classes. I have tried everything and remain suicidal for over 7 years due to the extreme pain. Tried every alternative therapy available. I can and do sympathize.

    Net ...I'm fucked and some day, sooner rather than later I will end this.

    I don't know what to say. It seems they are most viable for lower pain levels or different causation than SCI. I wish you every good outcome.

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

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