HELP: Does anyone with the MS Hug have experience with SCS?

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HELP: Does anyone with the MS Hug have experience with SCS?

Postby HappyPoet » Wed Jan 18, 2012 6:39 am

Horrible relapse.
Ready to leap from overpass.

Instead of pain pump, pain mngt doc is only offering SCS aka Spinal Cord Stimulation (wires with electrodes threaded alongside cord interfere with pain signals for, at best, 50% reduction in pain).

Wires would enter in Lumbar region: one extra-long to reach up to T1 for horrific MS Hug pain; one normal length to reach down to S1 for also horrific perineum pain (wires permanently scar into body, can break and injure cord at any time, cause shorts and/or painful *zaps* and more).

Does anyone with the MS Hug have experience with and/or knowledge of SCS (second-hand accounts welcome)? If yes, does/did it help? Where was battery pack implanted (abdomen, side of torso, above buttuck)? What kind of remote is/was used to control battery? Would you do it again?

MS Hug feels like boa constrictors are squeeeezing me to death, sharks are feeeeding on my sides, 5,000 lb elephants are crrrrushing my chest, and verrrry sharp knives are repeatedly stabbing under my front, left rib cage. (100 mg/day of opiates not touching pain).

Thank you.
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Re: HELP: Does anyone with the MS Hug have experience with S

Postby munchkin » Wed Jan 18, 2012 8:02 am

Hi

I have no experience but I just wanted to let you know that I'm very sorry to hear that you are going through that kind of pain and discomfort.

I hope this resolves for you quickly without invasive action.

Take care.
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Re: HELP: Does anyone with the MS Hug have experience with S

Postby HappyPoet » Wed Jan 18, 2012 2:55 pm

Hi munchkin,

Thank you for your kind words.
Much appreciated.
:)
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Re: HELP: Does anyone with the MS Hug have experience with S

Postby lovebug » Wed Jan 18, 2012 8:44 pm

You and I could shake hands! You described my symtoms perfectly. No drugs seem to take the pain away of the MS hug. Is there really a God out there somewhere............
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Re: HELP: Does anyone with the MS Hug have experience with S

Postby HappyPoet » Thu Jan 19, 2012 6:57 am

lovebug,

So sorry that you, too, suffer from the MS Hug. If you'd ever like to talk, please feel free to send me a PM.

Here's a link to the SCS forum at spine-health: http://www.spine-health.com/forum/treat ... timulation

Here's a link to a Baclofen/pain pump Yahoo group: http://health.groups.yahoo.com/group/pumpsters/
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Re: HELP: Does anyone with the MS Hug have experience with S

Postby lovebug » Thu Jan 19, 2012 9:37 am

`Happypoet` THANK YOU for caring.................I think it will be just time before I too will need the intrathecal pump since the pain is intolerable. I have tried so many different drugs and vitamins with no help at all. I even had the CCSVI surgery done in Sept. 2010 in California with yup you got it, no pain relief..........Not sure where to turn anymore for help.....
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Re: HELP: Does anyone with the MS Hug have experience with S

Postby HappyPoet » Thu Jan 19, 2012 3:33 pm

lovebug,

Am seeking 2nd opinion for the pump because MRIs are not allowed with SCS.
Sure wish I lived in a big city for more options of pain management doctors.
CCSVI stopped my imbalance and tinnitus but not my pain.

Keep in mind that with both methods (SCS vs pump), six months to one year are usually needed before therapeutic pain control levels are achieved and some level of opiates will always be required.
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