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SCS Implant needed, could use advice!

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Unread 01-19-2011, 10:22 AM   #1
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Confused SCS Implant needed, could use advice!

I have just been informed by my Dr @ Mayo Clinic that I am in need of an SCS Implant. The injections have not helped and this is my next step. I have RSD in my left leg from the knee down and has recently jumped into my right foot.
I have read that placement of the battery has caused some discomfort for some people. I also have read that as with all treatment with RSD patients, what works for some may have different resusults for others. I am only asking for you to share you personal experience if you want. I am scheduled on February 11th and would love to have some questions to be able to ask the Dr's before hand.
Thank you so much my RSD family. Peaceful sleep & gentle hugs,
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Unread 01-19-2011, 05:23 PM   #2
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Smile Hello Renee!

I'm glad you found your way over here to our little SCS forum!
I'm sorry about your RSD battle however. It's a terrible thing to have to live with and many of us understand.
There are so many wonderful folks at the RSD forum. I don't know what I would have done without them when I had my lumbar SCS implanted almost a year ago. Everyone was so very supportive.

Pull up a chair and make yerself at home

You are so very right in that our SCS stories vary and no two are exactly alike. It's a very individualized treatment and when you read thru the posts here, you'll soon see quite a diverse group of testimonials.

The good thing in your case is that these units have a pretty high success rate for lower extremity burning neuropathic/RSD type of pain.
And another great thing about this is that we get to do a 'trial' before committing to the actual implant. So you are doing your trial on Feb 11th, right?
One of the first things I consider to be of utmost importance is what is your relationship with your Dr like? Do you have confidence in him and does he have a good reputation with doing these implants.

If you are a pretty active person, it would be a good idea to communicate this with your Dr and ask him if he intends to do the percutaneous lead implant, or the more invasive laminectomy paddle lead implant.
Here is a very informative link I pulled from the stickies at the top.....it explains all of these factors to consider.....

Also, decide where you would like your battery to be placed. For lumbar implants they usually go in the hip/buttock area. Some prefer them in the lower abdomen region.

Ask your Dr what his opinion is of the risk of your RSD spreading.

You'll get many responses and ask anything you want. We love sharing our stories and it's good to know what is involved with this very big commitment.
You'll probably be required to do a psychological evaluation (for insurance clearance), so don't feel intimidated by this. It's standard procedure and there are a couple of threads on this discussion to ease any questions you may have on this.

After 6 years of non-stop horrible level 8 burning pain in both legs, I have found my SCS to be a welcome relief! The tingling sensation covers over the pain and I can have a decent quality of life, rather than being imprisoned in my own home watching life pass me by.

It'll be great getting to know you, Renee.
There are so many wonderful people here!

Truly Caring
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edever34 (01-20-2011), Mark56 (01-20-2011), renhenne (01-19-2011), vannafeelbettr (01-25-2011)
Unread 01-20-2011, 02:13 AM   #3
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Smile Hi Renee'

While my pain in lower extremities was neuropathic and not RSD, that burning which drove me to the edge of madness for years after a car wreck became under the control of my stim unit from Boston Sci. The tingling, like shivers, that I have where the burning was has masked the pain so that I was able to withdraw from all pain meds. Rae gives you a wealth of info and everyone else here will surely pass along their encouragement as you take this path. It has let me get away from my bedroom prison and enabled me to consider return for real to life.

Prayin the best for you,
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Unread 01-25-2011, 09:20 PM   #4
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Hi Renhenne!

I have RSD in both my lower extremities and brachial plexopathy in upper extremities. I have both a cervical and lumbar neurostimulators and am in love with them both. Having the batteries implanted is a nuisance, I won't deny that..... but the trade-off is worth it for me. I am completely off meds except for flare-ups. My relief story is very similar to Mark's. YET, with having the RSD, the one thing the stimulator does not help with is the burning feeling on the surface of the skin --- my doctor says the neurostimulators control pain from the inside out and generally does not give pain relief to the skin itself.

It is worth looking into. They give you a 'trial' surgery where they put the leads in your spine with the battery outside of you to test if the stim would work for you before having to decide if you want the permanent battery implanted.

Good luck with your decision. i just remember being in so much pain that I was willing to try just about anything. I am fortunate to be a success story, as I know not everybody is.

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rsd, scs implant, spinal cord stimulator

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