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Replacing SCS
#11
Man I've not been on for a day or so and much has been posted. I will try to check more often.

First yes I still have the same restriction and you can't jerk your back around with this in. One thing to do too is until the leads are healed in place you want to be real careful not to bend or jerk because you can cause them to move.
The reason you can't have an MRI is it could heat up the leads next to your spine and do some real damage. Now not sure how they make a lead that you can have an MRI but that is what I was told. Since mine are higher on my back I was told an MRI on my head is all I can have.
Never had any problem with metal detectors at all and I don't think I have ever set one off but I keep my card in hand to show them if it does. Now the airport is another matter. The wife and I both have SCS and in Vegas we both told them of out machines in our back and they gave us the whole deal. We got patted down, ran thru the imagining machine and they swabbed our hand for explosives. Now we don't mind them doing thier job I just hope when they are worried about somebody like us somebody bad doesn't slip by them.
Only other thing I can think of is my SCS only really helps with my legs, they told me it will not help much with lower back pain. I had a hard time sleeping before it for sure, the nerves in my legs would drive me crazy.
Don't know if it make a diffence but my machine is by Medtronics. And they have adjusted it many times and added programs to it over the years.

If I missed something just ask. The way my minds works I'm sure I wanted to say something else but forgot
 
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#12
Medtronics is the one I have also. I've had MRI's on both knees, no problem. I set alarms off, every time I go to wal-mart.

My rsd started in the (L) leg, and has spread to lower back, was revised to capture lower back, and new programs installed, then the rsd spread to upper back, I'm scheduled for surgery on March 8th to revise it again, to capture upper back. And I'm sure that after I heal, I will have to meet with the ST.JUDE rep and my doctor to make sure it is capturing the right area, then the rep will install any new programs, since the last surgery, which was November of last year. They can revise the scs to capture any body part your affected with. And program it to work however you decide works for you. They have low waves, high waves, strong ones, mellow ones, not to mention all the different pulses it has. You will need a rep to help you with this, as most doctors don't have a clue on how to program/set up an scs.

Starting to cut into me a little too much. I hope this is the last time.

Good luck too you.

 
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#13
Mine is set so I can adjust all those things just not which contacts it's using on the leads. I have 2 leads in with 8 contacts on each. They have changed programs in mine many times to get it where it works the best for me. We had 2 reps that were great to work with but I think both left and I'm not sure how the rep is now. My doctor does have the devise they can use to change it but like you said they really don't know how to do it.

Not sure how long before I will need mine changed, I use mine 24/7. The only time it is turned off is when I have something done and they want it off like an EKG or when the do RF.

I've never set off those things at the doors of places like walmart so not sure what would be different on mine. My wife has the same machine and leads and she has not had that problem
 
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#14
My SCS is at the end of it's battery life and I was instructed to contact Medtronics and my PM Doc when it dies so we can meet and schedule replacement. All 3 of us meet at least twice a year to calculate my actual usage and discuss effectiveness of the SCS.

PM doc has said it will be a simple procedure to replace the battery implant. However I have asked for a full replacement to include the leads that make it now able to have an MRI.

PM doc said he would do this but warned me that just because I've had great success with the 1st implant doesn't mean the 2nd implant will be the same story. But he added that if anyone could replace it perfectly he could. LOL. Love this doc.

Still not positive what I'll do.

Ps. Not quite 5 years in, usuage at 90% (almost 24/7), with approx. 70% pain relief.

Let Go, and Let God......
 
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#15
You are 5 year in and it needs to be replaced? They should last around 9 years and I'm 6 years into my first one. I've not meet with medtronics for a couple of years now.
Like I said the doctor that put mine in I've not talked to him about replacement of unit or leads.
Now they did talk to my wife at one time about changing her leads to the paddles but something about they have to make a bigger hole or something they didn't want to do
 
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#16
Glad I found this thread... getting a lot of info and glad to finally chat with people who've had or have it. I tried other sites and never got answers back. I even went through the St. Jude site where they can match you up to someone for questions and really never got the answers I was looking for.

I have already filled out the paperwork for SSDI, got a call for a couple questions that were not in the paperwork... I then asked how much longer would it take for an answer... lady told me up to 4 months.. Only been waiting since October 2014.
 
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#17
You should have no problem being approved for SSDI. They know about rsd, and if you provided medical records to show that, you should be approved on your first try. It was no problem for me. Been on SSDI for 8 years now.

I'm surprised that the ST.Jude people didn't get back to you. If you would like, I can ask my rep. if he wouldn't mind you contacting him, and maybe he can see you, or refer you to someone from ST. Jude.
 
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#18
Dolphins... it's the ones that have had the SCS for a while and they are like advocates... I had one women email me first and my hubby and I put in questions that we thought would be important.... She really didn't answer them...

You've answered a few and the same for Manley.. Now I do know that with the restrictions being kept, I can honestly say I won't be going back to work at all... My manager will try and get me out of there... At one point, they were trying to tell people that I quit so I would loose my Comp.... As it is, I just want to be as pain free as possible, no more pills (which never work) and to be able to sleep the whole night... My hubby is already threatening to bring a transport chair with us when we go on a much needed vacation in May..
 
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#19
i understand completely about not sleeping at night. I think this is something rsd patients suffer from. It's like the weather, when it's get's too cold, or the wind blows too hard, I can't go outside.

It is nice hearing from other rsd people like like you guy's/gals, sometimes I feel I'm all alone in this nightmare.

The last report from the pqme said I can't do any type of work. I am not surprised to hear you say that. RSd is a debilitating disease.

I hate to tell you this, but it doesn't get better with time, if anything, it get's worse.

I've had it since 2004.

If you haven't heard of the web site rsd.org, you should check it out.

 
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#20
Before you get a replace ask your doctor to call the repersenative who put your stimulator in at first and they can come to the doctors office and check it on a machine and can tell you if its time to replace the battery or the stimulator if you have a Boston scientific stimulator it last longer than they say. I had my stimulator since August 2008 and don't have any problems the repersenative came to the doctors office and checked mine in September 2014 and they used they told me it was working well just let them check your stimulator before you do another surgery.
 
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