Spinal Cord Stimulators
 

Its been months since I've been here. We are still battling workmans comp to accept my husband's rsd as an accepted condition. Hearing next Tuesday. Meanwhile we used our private insurance to go ahead with the trial, and finally last week had the permanent one implanted. Would love to talk with someone who has had the procedure. My husband felt an immeadiate relief when it was turned on. We believe this is going to be a great alternative to the meds he's been on for over year now....

Welcome back! The federal government's SSID accepts RSD has reason for federal aid. There are many on here that have been accepted for Diasability Compensation. Do you have a WC attorney? I didn't have a wc case, but if I had, I personally would use a good WC attorney. Lawsuits have been won with RSD injuries. I'm sure others that have exact information or who have been thru your circumstances will respond.
Happy to learn of your husband's SCS results. Take care, loretta

Loretta,
I also have had the scs. in fact I've had 2. The first one needed to be replace after a year, and the 2nd one only lasted a couple of weeks before I developed MRSA infections. I loved the trial, and was ok with the scs. It turned out the leads moved, and the battery which was in my right butt cheek, rotated around. that is why I had to have the 1st one replaced. I'm now going to get the pain pump trial. Hopefully within the next 2 weeks. I still don't have anything bad to say about the scs. I just decided that the pain pump would be a better match for me. I ride horses, and with the scs, I wasn't going to be able to do that again. Alot more restirctions with the scs then the pump. You have to make sure that hubby doesn't try and do to much for the first couple of months. I don't care how good he says he feels, he's not to bend, stretch, pick up anything heaver then a gallon of milk. If you don't follow the instructions at the beginning, you will be setting yourself up for more surgery, as the leads will move b efore the become scared in. Make sure he listens. I'd be glad to answer any question syou may have. If you want to PM me, I'll answer anything honestly. There were some questions that I couldn't ask, and I wish I had.

Hugs
Mary

thanks mary,

Thanks for the reminders about his limitations. I will keep my eye on him. He is very anxious to get back to work... he drives with a cdl license and cannot do so while on pain meds so hopefully this will be the answer. So far so good, no infection, the leads seem to be holding in place. The dr said it would take a good 6 weeks for the leads to scar into place. AS time goes by, i'm sure i will have questions.. i would love to be able to ask you as they come up.

April

We do have a wc attorney.. didn't think we needed one at first.. but am so glad we have one now. He have a hearing Tuesday to try and havae them accept rsd as a condition. As of now they have accepted a left shoulder and left wrist sprain. Its been 1.5 years since his accident. We just want this to be done with, get him as good as its going to get, and move on.

Thanks for your support!

April

Rsdwife
 

PLEASE KEEP US UPDATED. My SSDI attorney just quoted that the administration is no longer accepting RSD, nor FM as a diagnosis. I sure hope he is wrong & it looks like he is according to everyone here.

I don't have an SCS as the UK don't seem to do them in any children under the age of 16 and even in adults, they only seem to use them as a last resort so can't help you on that unfortunately.

Just wanted to write though and say that it's good to see you around again and that I have been thinking about you both. I hope your husbands operation went well and that he continues to get relief from the SCS.

You're both in my thoughts!:hug:

Alison.

I have had my SCS for a little over a year now. I was desperate for relief and can honestly say that without it I would probably be in a wheelchair by now as I was barely able to walk. The most important thing is to be as still as possible for 6-8 weeks so everything can scar over. I was told to usr the BLT method-no bending,lifting,twisting. I Had no surgery complications at all-Is it perfect no-but at least I can walk around now. I struggle with the leads in spine-mine was a lamanectomy type-not the kind pain Drs. do- Done by neurosurgeon and a lot more surgery than I expected,but all in all I am satisfied. Your manufactures Rep is vital- I have Medtronic-as reprograming as needed is really necessary. I have a great Rep and we have a good raport. Good luck!!!!

I just stumbled in here and seen this thread. I am setup for a trial medtronics scs for the week of thanksgiving. Its comforting to hear that medtronics is a good company to work with. They are telling me this is my last option. Right now I guess I will do anything to get rid of some of the pain. Im ready to go in the garage and take care of it myself. My insurance is a little different, I have a railroad to deal with instead of wc. So I cant comment on wc or ssdi. Thanx to all for the info and questions. This is a great forum. Krank

Hi Krank.

What do you mean go into the garage and take care of it myself???? You should never have a last option. Maybe this is the option for you the the trial. By the way welcome, you will learn a lot here and you will receive a lot of support...I will pray that you will have pain free days.

:hug:Sandy

Krank,

The scs isn't the last resort. I had 2 of them already,and I've been without one for a year now. I go in the beginning of Dec, Dec,1st to be exact, to get the pain pump trial. THe pain pump is for those who want and n eed a very active life. I have a horse farm and I ride horses. I need to get back to it again. with the scs I couldn't ever ride again. with the pump I can, after it heals, and all. even the book and dvd medtronics puts out talks about being able to ride a horse again after the pump. My PM hates the pump...dead set against it. I took matters into my own hand, found a dr. that would do it, and as long as they were in the insurance acceptance group I could have it done. Of course, needed everything redone, psych exam, etc, but that's ok...I will be able to drive and have my life again. don't give us

Hugs
Mary

scs & other treatments
 

I'm glad to hear someone positive about scs . i had the trial for my arm and had relief but did got positional change and was getting down legs too. dr suggested laminectomy type better for positional change. i would rather do percutaneous type b/c it isnt as much surgery to put in or take out. Glad to hear you had laminectomy and are doing good. i hesitate b/c of the limitations after getting scs. do you feel limited? were you able to decrease your medications? i am now researching ketamine inf. i feel such pressure to do something in fear that it may spread. i am starting psch for visualization and relaxation to help get myself emotionally prepared to try one of the treatments.Thanks for sharing your info. momof4

Thanks Mary and everyone. Well I had my shrink eval yesterday and he thought I would be a great fit for an scs. The funny thing was that I happened to be just down the hall from the Pm guy with all the scs posters on the wall. I have to admit his office looked a little more professional. I did ask him about the pain pump and he told me they are way too much up keep for you. He must have seen the look on my face because he immediately says well the option is up to you but I still highly recommend a scs. We decided to push the trial back another week to have more time to think about this. I know this really isn't my last option, but by talking to any of these guys they make it sound like it's 2012 or something. Does anyone know what the permanent restrictions are for a scs? I guess what I am really asking is what kind of life are you left with when the implant is all healed. Thanx Krank

You are getting lots of good info. I am the one who posted having the lamanectomy type SCS- Medtronic- Yes there are permanent limitations,discuss these with your Dr. Everyone if different. I do not necessarilly like being limited,but BETTER than not being able to walk at all.Get all of the info that you can to make the right choice for YOU! Will keep you in my thoughts and prayers-Fondly-Carol

well, I can I only tell you what I know, and it's only my perspective. I've had the scs the first one for over a year. There was a lot that I couldn't do that I really wanted to be able to do. But i was willing to accept that I would never do the things that I loved to do again as it meant a reduction of pain. In one way the best thing that ever happend is that I got a mrsa infections and had to have my 2nd one out. That was over a year ago. With the pain pump, after I heal, there are very few restriction. I have a horse farm. I want to, I need to, ride my horses again. I love amusement parks. I want to be able to ride the rides, with the pain pump I can, with the scs, I can't. with the scs you have to have your system adjusted, recharge the battery, what have you. WIth the pain pump, (for both this is after the recovery), I can ride horses, motorcycles, (if I wanted to), ride amusement rides, move around without worring about pulling the leads out etc. Yes you do have to have your pump refilled. Most of the time this is every 4 mos. or so. A lot of drs. don't like to put the pump in. why? I don't know. it does take a while to get the meds to the right cocktail and amt. the drs have to really really work to make it work. the dr is really the one that makes the pump sucessful. if they don't want to regulate the meds, or take the time and trial to find what works, then the pump will not work for you. with the scs, they put it in, and that is it. the company rep takes over the programming etc of the unit. with the pump, the drs have to stay connected with you to monator everything. a lot of drs don't want the hassle or the committment. easier to put it in and wash their hands of you. You will see them only if you run into a problem. and that is after the company rep has worked with you over and over and over. PM me if you would, and I'll hook you up with a group that deals only with pump questions.

Hugs
Mary

Hang in there...
 

Hi Krank,

Your medtronics person with your PM Dr. are the best people to talk to about restrictions. Our rep has been wonderful, as well as our PM Dr. My husband doesnt not like the feeling of pain meds and they mess with his stomach and interrupts his ability to hold a cdl license. He feels he would have more "restrictions" without the scs than with it. He is now 2 weeks into his scs and although sore for the surgery, is happy with the pain relief he has recieved. He has almost completely backed off from his pain meds. They really are only relieving the pain from surgery sites as the scs is taking care of the pain from rsd.

Hope railroad is better than wc-at our hearing wc dr said it wasn't rsd, but a psycholgical issue that makes my husband think he has rsd... couldnt' believe my ears....

a piece i left out regarding the pain meds was that they gave him a minimal amount of relief, especially in comparasion to the scs trail

SCS info... and ? concerning SSD
 

I have the SCS for about 14 months now.. My trial went well so I decided I would benefit from the permanent implant.. Unfortunately.. my SCS actually hurts my RSD when I have it turned on.... it makes the pain heighten...... even with tweeking.. I am going to leave it in as to help with my "good" leg as the RSD has now spread... Sorry to share bad news..I realize everyone is different.. it was not a bad surgery nor many limitations.. I know it is in my body.. cords up my back, internally and box is in my lower left hip area..

As far as SSDI... can anyone shed some info on that..Is it true that they no longer recongize RSD as an approved disability????? Pain of a 42 on a scale of 50...I would hope so!!:mad:

I just wanted to update everyone on the scs trial. The doctors office called friday and said "After further review we have decided to cancel your scs trial until you decide that you want one." This was perfectly allright with me right now. I am still on the fence with this thing and after reading about what some of you guys went through I just want to take some more time to think about it. I have been researching more about nerve entrapment more like Superficial peronial nerve entrapment. I guess I'm still in denial. I just want to thank everyone for their input. Thanx Krank

I think you made the right decision. If you aren't sure about it, then you really should wait. I waited for a while, then had the trial, then the perm, removeal then new one then removal. it helped a bit, but the trial was better then the perm. I'm going in 2 wks to have the pain pump trial, and I really tink it is going to be better for me then the scs. I will not know for sure until I try it, but there are more positive results then negative ones. It has taken me almost a year to decide to go this route, and after so much research I've decided to go for it. Even the dr was amazed at the questions I knew to ask. He said that he has never had anyone ask suck questions, that it showed that I had really researched and thought about it. Therefore, he decided to put me thru for it. Look into it, google it, join groups that are set up for it, and see which one would be best for you, or if neither one would be what you want.

Hugs
Mary

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

Hi,
 

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

The SCS debate
 

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 :Sigh: - 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 !!!..:eek::eek::eek::eek::eek:
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
:thud:

Hi 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!
 

Thank you Ada !! Your response makes perfect sense and you somehow even made my anxiety level go down several notches ! :Bow:
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??