On Tuesday my husband will see a neurosurgeon who may recommend a scs. A pain clinic doctor recommended it about a year ago and my husband was very against the idea. I think he is still against it but is willing to go hear what this doctor has to say. I think he is just plain and simply scared of having something implanted in him, scared of it making the pain worse or of the doctor screwing him up worse (since his hip replacement caused this to begin with). I'm trying to find out what I can about spinal cord stimulators -- are they painful, what is the typical recovery time, has it made a difference in your pain and activity level. Right now my husband hurts constantly but he still tries to do things like cut the grass or chores around the house, but he suffers terribly for it. He thinks that if it will just reduce his pain by 20% that it's not worth it and he'll just keep doing what he can do today and just live with it. I'm trying to explain that this disease progresses and that it's better to try and reduce his pain now, because afterall the pain meds will probably stop being effective. Is this something I should really try and encourage him to do? The Pain Clinic doctor recommended it and then just dropped it.

Lisa,

I know what your hubby is going thru. I had my trial scs last Oct. It was only for 4 days, but what a difference it made. I've had rsd for over 5 years, starting in my toes, and now I have it in both feet and legs. I've been forced to be in bed or a wheelchair for most of the 5 years. The trial does leave you sore, but by day 3 I got up (slowly) and put on shoes and socks and went to a home and garden how with just a crutch to help. My back hurt from the surgery, but it helped so much with my feet/legs. I then had the perm implanted 2 days before Thanksgiving. Did it hurt.....Yes....was it worth it? Oh yes. Recovery is long and you have to do what the drs. tell you. People have problems with the leads moving, but that seems to be (most of the time) because they are doing too much to soon. If he does what he is told, (and it will be hard on you, because when the pain from the surgery stops hurting so much, he will want to start moving and he can't).he should be fine. I have horses here at my farm, and I haven't been able to be with them for a few years. I'm now back to taking care of them and cleaning the stall, and sometimes riding my tractor. It does still take me a long time to do things, and I have to rest up quite a bit, but it is worth it. I have some of my life back, and I am planning my youngest daughters wedding for this Sept. I could never have done any of this with the scs. It is very scary, and you do have to go thru a psych eval before you get one. The scs can be programmed with quite a few programs, all giving different senations. I like a deep thumping that is almost like a heart beat. some people like a much higher feeling. It is so easy to have it adjusted, and adjusted from time to time it must be. I just finished recharging my battery which I do by plugging into a plug a group of transformers and wires that go to a belt that I wear around my hips. I only have to do this every 6 wks or so. no problem.
Good luck, and have him listen to his dr. the trial is just that. If he hates he then he doesn't get the perm. he's in control of it.

Hugs
Mary

Hi Mary,

An SCS trial is actually a very simple procedure. It is very similar to receiving an injection (which I am sure he has received several).
The goal of most trials is to get 50% or greater relief of their pain.
Anything under that percentage would be a failed trial.


I hope all works out for you.

there's quite a few threads on it - i did a forum wide search here's the results - {i hope the link works for you}
http://neurotalk.psychcentral.com/se...g_searchinfo=1

I have an scs implanted in my body but with my battery I have to go in every 3-5 years to get the battery changed. Meaning that I have to undergo the knife depending on how much you use the scs. The trial one that I did was for 3 days and I thought it was a god send. It worked great so I got a permanent one and I can control turning it off or on, if I want the stimulation up higher or lower. It was wonderful from the start. I have had it in since Dec. of 2006 and now I am starting to have more trouble with my rsd. I have to keep turning my stimulator up to get any relief but in the mean time I deal with muscle spasms and shaking of the hand. But you do have to remember a couple of things. When you go to the docs keep an open mind about things and every person is different in how they react with the scs. Your husband may try it and like it and never ever have any trouble with his. Like I said everyone is different. This monster affects everyone different so the scs will be different as well. I say give it a try. You are right about the meds some of mine don't even work for me anymore but I take them cuz the doc tells me to. You have nothing to lose by listening to the doc and giving it a try. Good luck with everything. I am praying for you.

Sincerely,
Screwballpookie

Hello, I have a concern about a cervical stimulator implant. I have had steroid injection, nerve blocks, neck surgery twice, and now i have had the trial of the stimulator implant put in but...... of course my moved and I had to go back in and have it fixed. Then decided that works for me so i went ahead and received the permanent one. I received the permanent one and well it moved not once but twice. Then they were not able to get were I needed it so they decided to put one in the spinal cord and one right under the skinbut close to the neck as they could where I could feel it in the back of my neck. Well that went real good except I got the flu really bad enough to send me to the hospital one night. Every since theni turn my stimulator on it gives me a very very bad headache and just makes me feel bad. I have done so many things to get it corrected but it just seems like everytime nothing looks good. I am fixing to have another surgery again where they put 3 leeds in my neck. I am scared and pray that this works for me. Any sugguestion on any therepy I should do or just anything.

I have received a permanent stimulator but this is in my cervical neck area. I have had problems from the very beginning even on the trials. They say that the neck area is the hardest for one of these to be put in. I am having another leed put into my neck area this week. I hope this gives me some relief because the pain is getting real bad. I can say it did work for me when I fist got it put in but then I got the flu and it has never worked for me since. For some reason it was giving me a headache every time I turned it on and that was not good. They have decided to put a third leed in to offset the others. I have decided if this does not work the only other option is a pain pump but the doctors don't want to do that because I am still so young. All I can do is keep trying what the doctors want me to. I hope it helps.

Vinson!!!!

In 04 I had the cervial stimulator implanted and 5 days after I was in a cab accident which pulled the leads out. Had it reimplanted 8 days after that and it has never ever worked. If I turn it on I might as well grab ahold of a cattle prod! No doctor in my area here in New England is willing to touch it. The original quack sewed it into my cervical area and they are afraid that if they cut away the tissue around it that has formed, than they may be cutting nerves too. How Grande!

Every Doc I have been too from Boston to New York has basically said "Oh Well" here are some drugs. And thats it. But I am going to keep my fingers crossed for YOU and I will hope for the best!!

Chin Up! Mark

Oh my gosh, Mark!!
How awful I feel for you!! what kind of doctor would sew it into your cervical area?!!
Looks like you have a good law suit there, Mark!! My goodness, how very awful!! My doc is kinda pushing for me to get a SCS and I alwys tell him, "I will think about it'! After reading stories of yours and others, I really think I dont even want to get one in! I will keep you in my prayers and hope and pray that a good hearted, 'SMART", "INTELLIGENT" doc. can get this out of you without messing up the nerves! Good luck, Marc! ~Love, Desi

Hi Mark!
Go for it! I have a lumbar stim and I cannot even remember how many revision surgeries I've had. Over 15 in the past 7 years. And after one of those I had a MRSA infection in the incision and had to have the entire unit yanked out and was in the hospital forever. But I had a new unit put in 6 weeks later, so that I would have a week and a half to recuperate before college started again. My SCS made it possible for me to graduate from college, UCSD.

I now have 2 leads- a laminectomy, which is a lead directly wired into my spinal cord through a hole where bone has been removed, and a lead that is anchored by a large metal anchor to the tissue that surrounds the bone. My battery is now contained in a special Dacron (similar to kevlar) pouch that has become intertwined with scar tissue to prevent the battery from migrating. It would move and press on my hip bone, causing intense pain and swelling in the joint. It has been a really long road and process. The year that I had the infection I had surgery four times that year. I had surgery three times a year throughout college- winter, spring and summer break most of the time, even though I was extremely careful with my SCS. But when it is working, I can function. So I will go through just about anything to keep it working. When it isn't, my levels of pain meds go up, and I hate that. The groggy fuzz that you live life through. I would rather 2 or 3 weeks of surgical pain for a much better quality of life the rest of the time.

My point is this-- it is so worth it. A lead can be removed anytime. Neurosurgeons are amazing creatures. Scar tissue can limit the area of coverage on subsequent implantations, but a good surgeon will work for you and find it. An SCS will help you so much. Go for the new lead! If it's what you want, go for it! We're supposed to be here to support you, not warn you off of something that is going to make your life better. It's just like anything else- it takes hard work to get what you want and you probably aren't going to get something for nothing. Oh, and you will feel the wires under your skin. The actual leads dive deeper and lay next to the spinal cord. So it is normal to be able to feel the wires. Freaky, but normal. I think it makes us special!

Hope this helps. Any questions, feel free to ask!
Lynn