Re: Spinal Cord Stimulator

[Guest guest]

My 2cents

You need to increase Neurontin. I think the effective dose is 2300mg a day. I

was on 300 and did nothing.

Prior to surgery I was on 600mg x 3 helped a lot.

Sounds like you need a new doc.

I had one just like that. When I switched I got my life back.

I was put on higher dose of Neurontin, and ER morphine called Embeda 20mg, then

15mg immediate morphine 3-4 a day as needed.

Also a muscle relaxer Amrix once a day 15mg, and I tried Limbrel an anti

immflamitory.

I had almost NO pain. Only if I was at work and really overdid it.

Typically I was at a 3... From an 8-9 take me to ER.

I hope you don't mind me interjecting.

I go to a pain clinic, they have been great. Someone once told me- the doc works

for you, find one who will. I go to Rehab Institute of Chi they work with TC etc

daily, find a place like it if you can.

No one should live with this much pain. As long as they are monitoring the dose,

everything will be fine.

>She has a tens unit but has only used it once or twice.  she says it makes her

pain so much worse.  They did a nerve conduction study on Monday.  I am really

curious to hear what the Dr. has to say when we go back next week.  She herself

has not told me about the SCS but the PT assistant was telling me during her

therapy that she was on a list.  She is just getting weaker and weaker and her

pain is no better with the medicine they have her on.  The Dr. seems to not want

to increase it at all.  She is only on 15mg of mscontin twice a day it just

doesn't seem like much to me.  She is on 3000mg of neurontin a day, but she says

she can't really tell a difference since she started it, about 5months ago. 

Just ready for some releif from all of this.  It feels like it will never end to

me, it has to be worse for her.

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>Subject: Re: Spinal Cord Stimulator

>To: tetheredspinalcord

>Date: Thursday, December 9, 2010, 9:50 PM

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> Same question for me like Kathy.

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>I have a external (TENS) one and not want to get SCS implanted after. i am

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>able to place them lower ore higher.

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>When i saw this 9 minute movie http://www.youtube.com/watch?v=rTnGFgVK_A0

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>(DUTCH) but it give you an idea )) i told him No. sometimes a can't use the

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>TENS causes more ore give just headache.

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>this can be also by SCS

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>Like Kathy is saying i also know a lot people that have less ore sometimes

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>no pain at al anymore.

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>A small group however can have it du multiple damage or problems with the

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>implant (battery) thats almost as big as a pacemaker

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>Every 3 till four year battery must be replaced.

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> Spinal Cord Stimulator

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[Guest guest]

Interesting and unfortunate that you had that experience. The pain clinic

at which I worked would only implant a stimulator in someone who had some

success with a TENS...clearly, they were doing the right thing!

In a message dated 12/9/2010 7:30:20 P.M. Central Standard Time,

kmoulton@... writes:

Hi Livvie,

Has she used a tens unit? If so, how did she react? I used a TENS unit and

it sent my nervous system into over-drive and the pain levels went through

the roof. They said the stimulator was different so I had one implanted -

it didn't cause as much pain or nervous system problems, but it got to the

point where the buzzing was driving me insane because it never felt " good " .

Also, my body rejected the device and started to come through my skin

along with causing very strange, granular scar tissue that built up all around

it.

That said, I've heard that others have great success ... all very

individual and they'll do a trial first to make sure she gets some relief.

Personally, I think their threshold for relief and surgery indications is low,

but

that's my opinion.

Kathy

Spinal Cord Stimulator

My daughter has been placed on a list for a trial...just wondered if any

of you have or have tried one and how it works for you?

Livvie

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

I Agree with completly,

I am at a painclinic to

It seems the diffirence is that here in the Netherlands the anesthesiologist

decide about al pain treathment.

They have a complete other view about pain.

The opinion of my anesthesiologist is that he try to make people painles and

Surgeon repair and remove but for him is the job over.

Go to a painclinic ore anesthesiologist in a other hostiptal if the not want to

do it how you want.

A TENCE is also a indication to get a SCS so why not take a pain block ore let

some.

He never wil report it to the neurlogist if you dont want this. My new Neurogist

are against pain treatnent .

I told him " We done, I am walk out with pain " The surgeon that operated me is

well qualified and accept my disision.

He did research (Now he is Proffesor and leading a new neurogic center in

Amsterdam.) But worked for 16 years now with TCS patients.

His explaination was when pain is blocked i never can make a good indication of

the pain anymore. But told me also " I have to respect the patient to go to a

pain clinic.)

So please be carefull what she is go to do.

(please let not only this docter deside let always make a second opinion how to

attack the pain.)

Good Luck Jan Willem

Spinal Cord Stimulator

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[Guest guest]

The SCS was no option for me because it works on one local place.

However i know people where it was helpfull.

They just say " I got my live back "

Others like me had failed the test for implantation because there where

painproblems on serveral places.

So if your pijn is come from one place

I will say concidder it !!

If it gife no good result you wil not get it implanted.

When the do place the remote controlled implant. the wil first do a sort of

test with only wired stimulatator.

As i failed the test myself the TWIN stimulator is still helpfull so.

When the pain is so badly i can use it just on serveral places just where

the pain is bad.

They will use this most of the time as the first test. If the helps they can

considder to think on the SCS as better and more confortable option.

Jan Willem

-----Oorspronkelijk bericht-----

From: cell

Sent: Friday, March 30, 2012 10:50 PM

To: tetheredspinalcord

Subject: Spinal Cord Stimulator

Hello Folks,

I don't think I have seen any emails in a long time. Anyway, has anyone had

experience with a spinal cord stimulator? Thanks for any info you might

have to share.

Randee

[Guest guest]

Keep me informed about it, i like to know how it goes there now. I know the

Pain Center has a good name.

Does she get a short stay first and then phone ore weekly appointments I

realy like to know this.

Good Luck Jan Willem

-----Oorspronkelijk bericht-----

From: cell

Sent: Friday, March 30, 2012 11:29 PM

To: tetheredspinalcord

Subject: Re: Spinal Cord Stimulator

Thanks, Jan. The TWIN must be what we call here a TENS unit. I was

wondering if that alone might also provide some help for my daughter. We

are hoping to get her evaluated soon at Washington University Pain Center in

Saint Louis.

Randee

Spinal Cord Stimulator

Hello Folks,

I don't think I have seen any emails in a long time. Anyway, has anyone had

experience with a spinal cord stimulator? Thanks for any info you might

have to share.

Randee

[Guest guest]

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> I am considering a spinal cord stimulator to relieve post tethered cord

neurological pain. I discribe it as having my legs in a fire with someone

scraping them with razor blades. I have tired ALL the medications for the past

two years with minimal positive results. It would be great to here from anyone

who has had a stimulator implanted and what the outcome was/is.

>

hi

i have a stimulator and it did ok for about 1 year now i am having surgery to

have it out because now when i use the stimulator it causes more pain also you

will not be able to have any mri's done with the stimulator inside you. hope

this helps