should i get the unit removed

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NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/9/2011 8:33 AM (GMT -6)   
just a thought, should i have another surgery to remove the neurostimulator from my back, the pa at my doctor said it would not be harmful if left in, im wondering should i have surgery to remove it or is it ok to leave it in there doing nothing. i dont want to pay for another surgery if i dont have to although frankly i will be long gone before my bills get paid and i dont plan on checking out for at least another 30-40 years. im 57 it my be a longshot but hey.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/9/2011 9:19 AM (GMT -6)   
Hi NiNi -

I guess an important question to ask yourself is whether or not it's uncomfortable for you having it there? I know that my IPG/battery unit causes me some discomfort, but as I get pain relief from it, it's a non-issue for me.

Also, I'm not sure how safe it is to leave it there permanently, despite what your doctor has said. I don't know about your particular unit, but most of those that I'm familiar with - even the rechargeable ones - still have a limited lifespan, and I wonder about the integrity of the battery after that timeframe. Mine is one of the high capacity rechargeable units, but even that has only a 10-15 year lifespan.

Wish I could be of more help.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/9/2011 11:07 AM (GMT -6)   
Thank you Laura i think you are absolutley right, i was leaning toward having it removed.  Its not working, its not going to work.  Right now it does not cause me any problems, but at some point in the next six months i am going to have it removed..i just dont like having something in my body that serves no purpose.  I am glad you responded i have wanted to ask you what CRPS is i sorry i dont know what CRPS stands for.  I dont want to invade your privacy  but if you feel you could i would like to know.  Thank you so much for your response,  everyone in this forum is so kind. Hope you are having a good day. 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/9/2011 12:14 PM (GMT -6)   
No - not invading my privacy at all. It stands for Complex Regional Pain Syndrome - formerly known as Reflex Sympathetic Dystrophy (RSD). It's hard to explain (even the medicos haven't worked it out yet) but it's a neuropathic pain disorder that usually starts after trauma. It usually affects just the limbs, but sometimes the trunk and sometimes internally as well. It also spreads, as it has with me - mine started with minor knee surgery nearly 12 years ago and it's now everywhere.

They think that it involves the central nervous system - that something goes wrong in how the brain and the rest of the nervous system interpret sensory input - especially pain signals. Which basically means that the injury heals but it doesn't stop hurting - and the pain is usually well out of proportion to what would be expected. It also affects the sympathetic nervous system and so alters things like blood flow patterns so we get skin that's warmer or (usually) colder than normal, odd colours, changes in hair growth, sweating patterns, skin atrophy, muscle atrophy, dystonia. Lots of swelling - my doc thinks that I'm probably lugging about 10kg of fluid around at the moment, not a bad effort considering that I only weigh 55kg overall. I've got a few photos on my website HERE if you are interested in seeing what it looks like.

You're right about this forum. I'm pretty new here too and it already feels like I've been here for years :)
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/9/2011 4:10 PM (GMT -6)   
There are not enough words to express how i feel, you are so brave. I dont know how but i saw your explanation and photos they are heartbreaking. i am sorry this is my third try at responding to you the first two were below your information and photos, how i got there i dont know but now i am here and this seems to be working for me i am sorry i am so computer ignorant, i am almost 58 and during the big technology burst i got left behind,  there is no one but myself to blame, when my girls, one had graduated and my youngest was in 10th grade when i began to lose control of my life because as a single parent, i had worked outside the home since i had graduated. so after several years of feeling sorry for myself, being under the covers and bam as i said technology had already started to pass me by.  i allowed it to, now i am trying to play catch up, so bare with me please.  I dont even know where to begin, you look so young to have to deal with CRPS, as soon as i remember how to get to your story i am going back to read it.  the pictures paint a thousand words.  I know you dont want sympathy but you have mine anyway. i look at the pictures and had read when you responded to me originally and say to myself, kathy (thats my name) you have not got it so bad. i am going to sign off now and try to get back to where i originally was when i saw your pictures and read your story. if i stay any longer i fear i will lose this response to you also. I can only say what a brave young lady you have to be. i will be back in touch and will learn to manuver through the computer better. have a pain free a day as possible you will be in my thoughts. 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 4/9/2011 4:15 PM (GMT -6)   
Nini,
I don't use mine anymore, but am leaving mine in. There has been extensive research on leaving them in & as long as they aren't pressing on a nerve or anything, there's no harm in leaving them in. The units have been around for decades & there isn't any indication that leaving them in longer causes problems. They are encased in titanium so other than any issues present when the unit was installed (which you would have uncovered by now), there haven't been any documented cases of the unit breaking down or causing problems years or decades after it was implanted.
The decision is yours to make, but keep in mind that there are risks to additional surgeries. Additional scar tissue can form and grow around nerves. There is a small risk of infection or nerve damage. And, of course, there is the cost. Keep in mind that if you do have it removed, you will need to choose whether to just have the battery/stim unit removed or whether, if possible, you also want the leads or paddle(s) removed. It is more expensive to have both extracted.

good luck with your decision!
Tirzah

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/9/2011 6:46 PM (GMT -6)   
ok here i go again second time trying to respond and losing everything almost at the end.  this is really bothering me, but i have to keep on.  i first heard about the units 12-14 years ago, i remember Jerry Lewis (the original Nutty Professor) writing an article saying how this unit had changed his life from depression and constant pain to very minimal narc meds, he also had problems with addiction to narc meds, anyway i remember thinking how wonderful this thing had to be. at the time i had very good insurance coverage but my insurance did not cover the surgery or the unit itself.  at that time the surgery and unit cost were somewhere around 100,000.-2000,000. a cost way way out of my reach. fast forward to 2011 and although the cost has come down, it was still out of reach financially for me.  i have to take personal responsibility now, i should have researched the cost and found opinions from persons other than the maker of the unit.  Thank you Tirzah, you are right on the money (sorry about the pun) surgery always comes with risks, i am as assured as i can be that right now there is no harm in letting it stay my unit  has a 5-10 year life if it was working. i will reacess after 5 years and make a decision then. thank you so much for your helpful voice i appreciate your help and all other
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/9/2011 7:01 PM (GMT -6)   
CRPSpatient my heart goes out to you what a brave young woman you are. i had never heard of this CRPS before i dont know how i got there but i saw your pictures and was going to read your story, but since even what i had seen and heard about this sydrome, i replied first and was going to read later.  i often do things backwards as i go through this life, this is one time i wish i had gone front to back instead middle plop. this is my third attempt at reaching you, the first two were done from the pages with the photos.  i see you are only 26-27 and were diagnosed 12 years ago, which mean the majority of your life you have lived with this. i think you must be an amazing person, when i look at my own profile its like wow so big deal you (meaning myself) have ddd, fibro,
and a few other things, but i know we all have a part of our own private nightmare. i am going to look around and see if i can get back to where i saw the photos i have so much more to say to you. in the mean time, hope you are doing as well as you can and you will be in my thoughts. 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.
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