Does anyone have any experience with these?
Please share...

Thanx ever so much!

GrayHoundLover

Hi from a Doxi lover. I've got the scs and I've had it since Thanksgiving last year. I love it. I had the trial in Oct, and didn't want it taken out. It has given me some of my life back. I am going to have to have the battery moved, hopefully next week. I've had rsd in my feet/legs for over 5 years now. I couldn't put shoes or socks on or walk. Now I am wearing shoes and walking around. I have 3 horses and now I am back taking care of them and the barn. It still takes me a while to do what I used to do in a hour, but at least now I can do it. The one thing you must know is that recovery takes a couple of months and you MUST do what the dr says. That includes no bending, stretching, reaching, or carrying more that 5 lbs. once the leads scar into place you can go back to being able to get around. Hope it works.. try the trial and see if it works for you. If it doesn't then at least you know

Hugs
Mary

Hi.

I just recently had the SCS trial. I have RSD in my arms from TOS rib resection surgery.

The stimulator took all the sensitivity away. I couldn't have long sleeves on my arm until I tried the stimulator. I couldn't have the air on in the car because the breeze hurt. The dogs wagging their tail hurt. All of these things went away.

I don't know where you have RSD, but this is atleast an option to try. You'll know right away if the tingling, vibration sensation is right for you. I found that because my lead was placed in the cervical area in my neck that I could have it set very low and it would take the sensitivity away.

Atleast with this, I can start lowering my medications.

Note that I second that it'll take a long time to recover. With the lead being in my neck, I needed to wear a neck brace for the duration of the trial (5 days) so the lead wouldn't move. I'm told that I would need to wear it for atleast 3 weeks with minimal movement in my neck and plan to be out of work for that long also when I have the surgery.

My feeling is that I can't go through life being drugged up on medications. I want to get back to wearing short sleeve shirts without a pain patch. With this, I can ween down on the medications.

FYI - You do need to know that with the surgery you need to get a psychological assessment done. Most insurance companies require it.

Good Luck.

I agree about the trials. Most insurance companies will have specific requirements about stimulaters. Check with them first, as the whole process is very costly. Some insurance will fight paying for this at all, especially WC carriers.

With mine, I first needed a block as a diagnostic procedure to demonstrate that the doctors were on the right track and that the pain was actually neurologic.

Then was the psych evaluation. This is to prove, among other things, that:

a) you can deal with a foreign electronic object placed permanently into your body. (Some people will freak!)

b) you don't have expectations that are far too high. The success rate is rather low, and even with successful patients, it does not magically cure everything.

c) you are able to care for yourself enough to allow the healing process. As others said, the recovery is critical so the leads do not shift.

After the psych exam, you need to have a trial. No sense in spending insurance money if it will not work. Again, it does not work for everyone. The "electric shock" sensation may drive you nuts and still not reduce your pain.

Finally, you can get the implant. Look forward to staying in bed for several weeks. If there is something real important you cannot miss, like your son's wedding out-of-state or something, reschedule the surgery. Do not cheat on the recovery.

Many people find these work well. I was told that some patients have a successful trial but find that the permanent one is a disappointment. Keep that in mind.

One other thing. Discuss with your doctor or surgeon the location of the generator/battery pack. Some of us have found that the doctor picked an easy spot, but that it is crowded and therefore uncomfortable. If you are thin, they should look for a spot where you have "a little extra room" rather than somewhere where it will bulge.

Good luck on your decision.



Mike

Thank you very much Mike, DWT & Mary,

I was asking for my friend who also has RSD, It's been recently recommended by a Pain Specialist that a Spinal Cord Stimulator be the next method of treatment for her. (This has also been suggested by a Pain Specialist as an option for me once...now I forcing myself to learn more about SCS's in order to support my friend through absorbing all this.)

Although a bit frightening, I think I would, personally, try it if a slight increase or adjustment in medication didn't work. Anything is worth getting rid of the pain long term and taking back ones quality of life...

Truthfully speaking, I would like to put off the pain pump for as long as possible, simply because recovery seems a bit unpleasant and I'm a wimp. (I promised I'd be good!!!!!!!)

As for my friend, I'm just hoping she gets some much needed pain relief soon, one way or another...

Thank you once again for your time my friends!

I'm sure my friend and her loved ones thank you as well,


Melissa

Thanks to everyone who replied. It's been mentioned to me about a stimulator as well. It's helpful to know others are seeking answers to the many questions about RSD and the options.
I spend time reading through posts. It gets very overwhelming dealing with this pain.

Many thanks to all of you.

You know my story on the SCS...

Love you,
H

Hi Sweetie!

We've actually been discussing what happened to you...that's where some of the hesitancy lies as well...

The one argument that has been made in favor of getting it done is that the RSD has already spread to the other limbs, do you think there are anymore threats from getting it done at this point in your opinion?

I'm gonna call you later Alligator.

Love you!