Re: Anyone have a permanent stimulator?

[Guest guest]

twinmama22 wrote:

> So far I've gotten little to no feedback on everything I've asked about.

> Are there not alot of RSD folks on here, do I smell? Maybe I'm not

> asking the right questions, I don't know.

I haven't noticed an offensive odour, but then again, I have a stuffy nose:-)

I've no idea how many RSD folks there are on this group. I don't have it, so

haven't any feedback to give you on the subject.

Maybe you need to joining a totally RSD group too. I checked the Yahoo site and

there are a couple of large RSD groups available plus an RSD news site. Maybe

you could get answers from one of them. Seems like it would be worth trying,

especially since you're looking at getting an implant. Here's the link to all

the RSD sites.

http://groups.yahoo.com/search?query=rsd & submit=Search

--

Lyndi

[Guest guest]

Sara,

Sorry you haven't been getting the answers you need :-( I don't have RSD,

but my doc has talked about the option of an implant for leg/back pain.

there are some recent posts on here for a web site with more info, and at

least one person that has one already has also posted. Maybe you just

missed the answers?

Good luck, hope you find the answers you need!!

Blessed Be, Lori in California

[Guest guest]

Dear

I am sorry you have felt this way--I had a similar experience on several

pain groups when I was considering an intrathecal Morphine pump.

I have since found a WONDERFUL support group for pump patients--don't know

if there is one for SCS pts but I would think there might be. It was

certainly helpful to me in my decision making and helpful in so many other

ways as well. Someone on another group asked about the SCS and I will copy

below my reply. I hope you get other feedback as well.

welcome and feel free to write me any time

Kim

My experience with SCS:

I had a spinal stim trial several months b4 the pump placement--my doc was

pushing for the scs (sometimes I felt like it was a $$ thing--even though my

doc doesn't seem that way to me.....don't know)

At any rate--I watched the videos--heard about Jerry and his success

so I agreed to try it.

the trial consisted of the wires being placed in the OR and then connected

to an outside unit. I immediately HATED the feeling of it and couldn't

tolerate having it turned up very much at all.

I have neuropathic leg pain and was assured that this would help. I went

home with the unit and played around with it for a few days. I really did

try to give it a chance--I even asked to keep it beyond the few days when I

was supposed to have it removed.

I didn't get any relief--the feeling to me was like my legs being

asleep--but exaggerated greatly--that buzzing kind of feeling. The doc told

me " it should feel like a gentle massage " YEAH RIGHT--not like any massage

I've ever felt!!!

As I said--I did keep it longer than originally planned because I ws so

desperate at that point for some relief--I was almost determined to see some

benefit---and even though I didn't feel relief--I almost went ahead with the

implant (thank goodness i didn't!!)

My doc finally told me--if it isn't helping don't do it!!

So--good thing is, you can have a trial (I think that is a standard

procedure) so you will be able to know if it will help at all b4 you have a

permanent implant. Worth a try in my book--even though I didn't like

it--you never know--you could be one of the ones it works great for.

[Guest guest]

Hey ,

I doubt you smell ! I don't have any info on the RSD, but just wanted to say

hello and hope that someone out there will be able to help. I know how

frustrating it is to not get the answers you need. There is a lot of info on the

Net about such things, but I know personal affirmations are sometimes easier to

understand and all.

Good luck,

Caitlin/AR

<twinmama22> wrote:

> So far I've gotten little to no feedback on everything I've asked about.

> Are there not alot of RSD folks on here, do I smell? Maybe I'm not

> asking the right questions, I don't know.