[beatnrsd]

Hi, new to NeuroTalk.....

I am very wary, I admit; but it's like a perverse need to be understood...the exhaustion that follows the pain.

I have RSD. Hip surgery on April 15th. Officially diagnosed in September--but everyone knew it; like the elephant in the corner of the exam room NO ONE would talk about. Finally, I went, in a rare move, outside the hospital system I usually use, and received almost immediately--thanks to photographs which I had dated, etc, the the journal of symptoms.

Multiple meds, multiple procedures = no relief. Deathly allergic to iodine. Horrible reaction to steroids. Ugh.

Ok, I am learning about that but already they want to do a spinal cord stimulator' and failing that, an intrathecal pump. My body is stubborn, and thanks to a chronic bone condition, I've got a bit of a tolerance...and

YES!!!! I have done several "med holidays" to clean out my system and reduce my tolerance. But neverthelless, here I am.

Before developing RSD, I've had multiple nervous system insults--which increases your likelihood of developing RSD. Not a hip replacement, and without a complicated explanation, long period of immobilization--reads like a book.

Now I need at least 2 surgeries plus a scar revisions, without which, I am going to continue to get skin infections, two of which have been MRSA.

Also--what kind of RSD-er would I be without gastrparesis?????

1. Thoughts on stimulators (basically, it's in both legs-entire rt. leg, lower left leg.

And the hits just keep on comnng!!!

[LIT LOVE]

Well--isn't that an introduction?

It seems they went from zero to sixty with you over night? If you do an Internet search with RSD and Hooshmand, you'll find a good site by one of the former experts in the field. There's so much detailed info under the puzzles.

I've had RSD for 10 years. I have not tried the SCS yet. It seems a major gamble. You might see major improvement, but it might cause spread as well. A very tough call.

You're still in the window that is considered ideal to go into remission... I'd research Ketamine--outpatient treatment and inpatient. Look at Dr. Hooshmand's 4 F's diet. Research HBOT. Therapy in warm water. Etc.

Welcome to NT. If you Post your story in the RSD section as well, I'm sure you'll get lots of helpful info!

[Rrae]

Welcome to NT!
This is such a great place to be. You've killed 2 birds with 1 stone by coming here because we have some wonderful members in the RSD Forum:

http://neurotalk.psychcentral.com/fo...sprune=-1&f=21

AND there is a special sub-forum (listed in the 'Medications & Treatments' section) specific to SCS/Pain Pump discussion.
http://neurotalk.psychcentral.com/fo...prune=-1&f=118

Like you, I have RSD in both legs. I've had my SCS for 2 years and am doing very well with it. It provides a wonderful soothing that covers over the pain.
As you read thru the different testimonies, you'll see that each one is different. The risk of RSD spreading is certainly something to check into. Thankfully it didn't happen to me, but like LIT LOVE mentions, it is reality.

Anyway, make yourself at home. Everyone is very caring and helpful.
It's great to have you!

Caring,
Rae

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. Sorry to hear what you are going through.

There are great number and caring fellow members here, just let us know how we can assist, you will see we are are supportive and relaxing place. Our shoulders are here for support in many ways. Looks like Rae has got you started.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[beanierose]

Hi, I had a permanent SCS implanted 2 days ago. Programmer not able to finite the stimulator to the groin area, at times it was a drop to my knees pain in the hip and leg! Got very emotional and they gave up programming and sent me home 100 kms away from the hospital. Hoping that Dr can program to the right area. Anyone have this problem after the surgery?? Anxious to get this working!

[Rrae]

Welcome to NT!
I'm sorry you're having this trouble with your unit.
Did you do the trial implant? If so, did it seem to do a good job? That would be encouraging because then we'd know that it IS capable of getting the stimulation where you want it.
Hopefully the right tweek session will take care of this.

In case you didn't see the reference to the SCS forum in the post above, here's the direct link to get you there:
http://neurotalk.psychcentral.com/fo...ysprune=&f=118

I'm over on that forum quite a bit. Hopefully we'll see you over there.
It's great to have you!

Caring,
Rae