I just wanted to let everyone know that I have a scs and have had it for alsmost 3 years. I have a medtronics and yes they are a great company to work with. My scs was placed in my lower right stomach and the leads at the top by my neck area have moved and I havent been able to run my scs for well over a year because I wasn't getting relief in the right area. I just recently found out that my leads up by my neck have moved and are laying on other nerves. I don't know if it is causing other damage or maybe even permanent damage that I am unaware of. My pain doc and I have been waiting for an approval from wc to fix it for over a month now and I called my wc attorney and they are going to send a letter to them to see what the hold up is cuz they are the ones who approved of me getting the scs put in in the first place. So what the hold up is we don't know but hopefully soon they approve it and I can get it fixed. I asked the pain doc what would have made them move and if there was anything I could do to prevent them from moving and he said that sometimes it just happens and there is no way of preventing it from happening. So I question whether its a good thing or not.

Tracy

I haven't had the SCS but I do want to say that I know 4 people around here that have had them and all 4 are either off or out. All 4 said it caused spread or did nothing for the RSD. Just talking to those people told me that I wouldn't want one. That's a 100% survey there against it for me.

Also I did here on the news about a month ago that Medicare would no longer pay for a pain pump except for cancer patients. I don't know myself if it's true or not but it was on the news. They are not always right either but the way they are cutting Medicare, I wouldn't doubt the truth of it.

I also heard that Social Security no longer covers RSD but again, don't know for sure but wouldn't doubt it. I do know a few years ago it added it on to the medical reasons to get Social Security but they do keep changing it now due to the cuts.

In other words, hell, who knows. LOL The Government is involved.

I do want to tell you this story about me. 3 years ago April, I had a Vegal Nerve Stimulator put in for depression, it did nothing for me but cause problems. Medicare ok'd paying for it and last April, I had it removed so I could have MRI's and I got a letter last month that Medicare didn't pay for it being implanted nor would they. So that's like shutting the barn door after the horse got out. I can't pay for it so it's the companies loss. It just seemed wierd to me that they decided not to pay for it after saying they would.

Krank, I do know what you are saying about taking care of things yourself. I have been in councelling for over 10 years to deal with my depression over the RSD pain. I do pretty good now but I won't give up councelling because when I am at my worst, I ask for help to get through it. God helps me through it, I know that too.

You can get better from the RSD and if you keep looking for the right answer for you, you will find it. Don't give up. Others will tell you on here, you can go into remission and get better if you don't give up trying.

Ada

Thank you all. I dont know what I would do without this forum. This has truly been one the most stressful times in my life. To find friends on here that genuinely care is priceless. I wish I had something to contribute back to help someone who has been diagnosed with this nasty little demon. I hope some day that I will. I guess all I can do is just update everyone on how things are going up here in Minnesota. After all decisions being made from myself to my doctors about this scs we have decided to go through with the trial. My orthopeadic who diagnosed me so early is the ONE doctor that I trust and respect. He has treated my and my family with the up most respect out of all the doctors that I have came in contact with. He just told me just try the trial with no pressure to go ahead with the implant. Just test drive it. There is no hurry and no deadline. If it works it works if it dont it dont. What I like is he is a no pressure kind a guy who is getting a huge amount of pressure from a Huge Railroad company. I would recommend him to anyone who is looking for a ortho who knows RSD. So Im set up to due my trial on December 7th. Thanx krank

Good luck to you Krank on your trial !! I am waiting to get mine scheduled. Like you, I have gone back and forth so many times it's not even funny...plus I can VERY much relate to the "garage" thing - the feeling of hopelessness is so hard to deal with.....

My confusion is this : I'm not even sure which fricken section of the forum I belong in because I've been told i have everything from Fibro, to RSD, to Peripheral Neuropathy!! This part of the forum seems to have the most detailed info on the SCS, but I'm new, so maybe i just need to look around better....I started a thread "Quitting Fentanyl - UGH" yesterday. It has my detailed health info regarding me losing the ability to WALK and the intolerable pain etc....
I decided to post here and reach out for help because I'm wondering how to get thru the trial SCS and be able to tell the difference between whether or not the SCS is providing pain relief at the same time my body is going haywire from getting off the powerful pain meds.
But even MORE confusing to me is HOW do I know what i actually have ???
Two different Neuro's have said it's "Small Fiber Neuropathy" per Nerve Conduction Study, however I do not respond AT ALL to ANY of the meds that are supposed to target neuropathy (Neurontin, Lyrica, Amitriptyline, etc)
One Pain Doc said yes it's RSD......one just poked me in 18 places and said i have Fibro and then bolted out the door to his next patient. I personally suspect it could have something to do with Metabolic Neuropathy from what I've been reading, but no Dr around here will investigate further. It's not like i don't have Ins or won't pay. I've spent approx $10K a year for 5 years trying to figure this out !!!..
I sound like a pathetic idiot, but all i want is my life back so i can be a wife and mother again.
Thanks for putting up with my rant......please help. Point me where i need to be. I trust in God Almighty but i guess I've been destined to wander in the desert with this curse.

Rae

I read up a little on the metabolic neuropathy. It is usually caused by other medical problems and it does cause pain.

What I wanted to say though is, that it is possible to have all of these. RSD and Fibro come hand in hand quite often. Fibro and Cronic Fatigue Syndrome go hand in hand quite often. It's possible that you have all you have been diagnosed with and each Dr. you have seen only knows how to deal with what they have diagnosed you with and don't know about the other things enough to confirm them. A Rhemotolgist diagnosed my Fibro, a Hand surgeon confirmed it and the RSD, TOS and some of my other problems. Each Dr. seems to know about only certain things.

Those Nerve conduction studies donot show much of anything. I have had 3 and they didn't show anything. I was being checked at the time for TOS. It almost never shows up on the NCS's but as I said a lot of people get no results from the studies.

If the pain Dr. is good, stick with him and let him keep you on meds, do blocks or what ever he thinks needs to be done for the RSD. He should be able to help with the PN also.

When you are dealing with different medical issues, you usually have to see different Drs. for each of them anyway.

Believe me, you are not an idiot. It is possible to have all of these things.

Ada

Thank you Ada !! Your response makes perfect sense and you somehow even made my anxiety level go down several notches !
I guess I'm just going in circles as my SCS trial implant date gets closer....worrying about everything all at once - when in fact, as you say, they probably ARE all different conditions tied together somehow. All I can do is take a day at a time and see if the SCS is gonna help with the pain....and if it does, i guess it doesn't really matter if i have a straight answer to what I'm dealing with......just as long as the pain goes AWAY.
Thank you and God Bless
Rae

Is this the SCS thread you are thinking of??