Tracey/ SCS

[Guest guest]

Tracey, I am so happy you are doing alot of research about the Scs. Also

another thing You can never have an MRI if u have one in. Cant go through

the metal detectors at airports. etc. But they give u a card that tell all

that, amd you give it to the airport. security people. I personally Hope

and Pray you dont go through with it. Also I wouldn't trust that Dr if she

is saying no meds for that long. as I said they even had me bring my own to

the hospital to take. SCS never means no more pain meds EVER!!!! Margie

in NC

[Guest guest]

Tracey,

You don't know me because I am involved in a couple other groups that my

time rarely allows me to contribute to this one; but when I saw all the talk

about how your doc is going about this SCS implant with you my blood has

begun to boil. So please pardon my strong opinion and motherly advice...I

just can't hold it back!

My first thought is what are your doc's intentions? This is a very expensive

(profitable) procedure and if she is not a doc that believes in meds. I

would run and not walk away from her! Some 'uneducated' pain doc's are under

the mis-understanding that the SCS takes the place of meds all together. My

SCS was placed in the hopes of reducing my use of narcotics because I was

nodding off at my computer at work. I did the trial and during that short

time 4-6 days we eliminated the hard stuff to see what the SCS was doing on

its own. But don't forget when the real one goes in you will have surgery

pain and your SCS is set for a particular region...not your whole body. The

trial is totally different than the implant, the trial can be done with a

TENS unit and show you just about the same results. Mine had to be moved (

the leads, not the unit itself) 4 times because they couldn't get it to hit

both legs and feet. I finally had to have a Lapendectomy (I think thats the

name) that is where they cut my back from stem to stern and sawed off the

tips of the spine bones, then screwed a wide lead belt ( with double the

leads as normal). It was major surgery and a neurologist had to do it. The

only benefits I got from the SCS was that it did control the burning in my

legs. I had to stay on the narcotics for the pain-pain, I seperate the

burning from the actual pain from the area that has been traumatized, for me

it was the feet that started the whole thing. My pain remains the same if I

turn off my SCS but the burning comes back quickly. I think the RSD

progressed during this whole SCS stuff, but who knows? Since I still needed

the narcotics and was still nodding off at work I talked my doc into the

morphine pump...he said this normally doesn't help RSD much as is the

general opinion of most doc's that treat RSD. I WISH I had done the whole

thing in reverse because the morphine pump did so much for me...I was on a

very, very small dose ( couldn't even tell I was medicated) but the pain was

so much better and controlled.

Please see a neurologist before starting this. You can call Medtronics and

ask all the questions you want...get some stats. before you find yourself

with this expensive buzzer in your body and then NO pain meds. this would be

terrible. I don't know where you live but you can always let her do the

trial and say it doesn't do anything ( it IS a weird feeling to get used to

and alot of people can't adjust to having this buzzing in their bodies).

Then tell her you want to try the pump....it can't hurt to try it, then you

can really get away from the meds. if she will find the right dose for you.

My gutt feeling is find another doc before you do either....nothing less

than an Anesthesiologist or Neurologist. We just had a law passed here in

Alaska that says a hospital or physician doesn't treat your pain and treat

it as a priority. No more being sent away with a bottle of Ultram and told

to just live with it. They have tons of research done now that shows

patients with chronic pain do not become addicts by treating them with long

term narcotics use. I wish you the best and truly hope you don't stick with

this doctor if your pain relief isn't her priority...or is she more worried

about getting her license blemished by giving out narcotics.

This was the topic of yesterdays posts but my son wiped out all the email

before he knew I downloaded it to his computer instead of mine, so if anyone

replied to me personally I apologize but its gone.

in Alaska

*Forgive, O Lord, my little jokes on thee...and I will forgive thy big one

on me!*

Favorite quote by Frost.

Digest Number 465

[Guest guest]

,

Thank you so much for taking the time to email me

about your experience with the SCS. I'm in a real

dilema here and not sure what to do. From all the

responses I've gotten they've been mostly negative

toward the SCS and my doctor. I agree. I just

received a call back from a doctor's office in NYC and

they can see me but not till May 23rd. She is putting

me on a cancellation list. It's a couple hours drive

for me but worth it if he's a good doctor and will

help me.

After really thinking about the SCS I don't like

the thought of having this thing in me. I am 37 and

wonder about having it the rest of my life. Doesn't

sound like a good thing. I'm going to put a call in

to my GP and see if he will write me a script for my

current pain med and get me through for a couple of

months.

I just feel so confused here not knowing what to

do. All I want is to find a permannat doctor who will

treat me for my RSD and support me but I'm not getting

anywhere with it.

Thank you once again for taking the time to write.

I have taken all you said into great consideration.

Hugs, Tracey

--- Hill wrote:

> Tracey,

> You don't know me because I am involved in a couple

> other groups that my

> time rarely allows me to contribute to this one; but

> when I saw all the talk

> about how your doc is going about this SCS implant

> with you my blood has

> begun to boil. So please pardon my strong opinion

> and motherly advice...I

> just can't hold it back!

> My first thought is what are your doc's intentions?

> This is a very expensive

> (profitable) procedure and if she is not a doc that

> believes in meds. I

> would run and not walk away from her! Some

> 'uneducated' pain doc's are under

> the mis-understanding that the SCS takes the place

> of meds all together. My

> SCS was placed in the hopes of reducing my use of

> narcotics because I was

> nodding off at my computer at work. I did the trial

> and during that short

> time 4-6 days we eliminated the hard stuff to see

> what the SCS was doing on

> its own. But don't forget when the real one goes in

> you will have surgery

> pain and your SCS is set for a particular

> region...not your whole body. The

> trial is totally different than the implant, the

> trial can be done with a

> TENS unit and show you just about the same results.

> Mine had to be moved (

> the leads, not the unit itself) 4 times because they

> couldn't get it to hit

> both legs and feet. I finally had to have a

> Lapendectomy (I think thats the

> name) that is where they cut my back from stem to

> stern and sawed off the

> tips of the spine bones, then screwed a wide lead

> belt ( with double the

> leads as normal). It was major surgery and a

> neurologist had to do it. The

> only benefits I got from the SCS was that it did

> control the burning in my

> legs. I had to stay on the narcotics for the

> pain-pain, I seperate the

> burning from the actual pain from the area that has

> been traumatized, for me

> it was the feet that started the whole thing. My

> pain remains the same if I

> turn off my SCS but the burning comes back quickly.

> I think the RSD

> progressed during this whole SCS stuff, but who

> knows? Since I still needed

> the narcotics and was still nodding off at work I

> talked my doc into the

> morphine pump...he said this normally doesn't help

> RSD much as is the

> general opinion of most doc's that treat RSD. I WISH

> I had done the whole

> thing in reverse because the morphine pump did so

> much for me...I was on a

> very, very small dose ( couldn't even tell I was

> medicated) but the pain was

> so much better and controlled.

> Please see a neurologist before starting this. You

> can call Medtronics and

> ask all the questions you want...get some stats.

> before you find yourself

> with this expensive buzzer in your body and then NO

> pain meds. this would be

> terrible. I don't know where you live but you can

> always let her do the

> trial and say it doesn't do anything ( it IS a weird

> feeling to get used to

> and alot of people can't adjust to having this

> buzzing in their bodies).

> Then tell her you want to try the pump....it can't

> hurt to try it, then you

> can really get away from the meds. if she will find

> the right dose for you.

> My gutt feeling is find another doc before you do

> either....nothing less

> than an Anesthesiologist or Neurologist. We just had

> a law passed here in

> Alaska that says a hospital or physician doesn't

> treat your pain and treat

> it as a priority. No more being sent away with a

> bottle of Ultram and told

> to just live with it. They have tons of research

> done now that shows

> patients with chronic pain do not become addicts by

> treating them with long

> term narcotics use. I wish you the best and truly

> hope you don't stick with

> this doctor if your pain relief isn't her

> priority...or is she more worried

> about getting her license blemished by giving out

> narcotics.

> This was the topic of yesterdays posts but my son

> wiped out all the email

> before he knew I downloaded it to his computer

> instead of mine, so if anyone

> replied to me personally I apologize but its gone.

> in Alaska

>

> *Forgive, O Lord, my little jokes on thee...and I

> will forgive thy big one

> on me!*

> Favorite quote by Frost.

> Digest Number 465

>

>

>

>

[Guest guest]

Tracey,

I know that you have received alot of information

on spinal cord stimulators. I have had one for 4

years now and couldnt imagine living with out it. No

it doesnt take a way from the pain totally but with me

it does help. I went into it with positive thinking I

wanted to get back some of my life. I had B12 shots

everyday and took lots of vitamins to help before

surgury. I had them put on a self help tape and

headphones during the surgury. I was in lots of pain

and thought that it could not hurt anymore than what I

had already was experiencing. Do your research and

think it through a great deal. I know you have

received alot of good and bad info on scs. It has

taken a year or so to actually get use to the scs and

knowing when to turn it up helps alot. Ask your

doctor for patient refrences and talk to them. I have

people who are considering a scs call me and even will

met for lunch so that they can personally see scars

see unit and get to answer questions. Well I hope I

didnt intrude on your question and take care. Vikki

--- margie545@... wrote:

> Tracey, I am so happy you are doing alot of

> research about the Scs. Also

> another thing You can never have an MRI if u have

> one in. Cant go through

> the metal detectors at airports. etc. But they give

> u a card that tell all

> that, amd you give it to the airport. security

> people. I personally Hope

> and Pray you dont go through with it. Also I

> wouldn't trust that Dr if she

> is saying no meds for that long. as I said they

> even had me bring my own to

> the hospital to take. SCS never means no more pain

> meds EVER!!!! Margie

> in NC

>

__________________________________________________

[Guest guest]

Tracey,

Best of luck. Vikki

--- Mullen-Krieg Tracey-Herb

wrote:

> Vikki,

> thanks for the email. After a lot of thought

> and

> consideration and unfortunately not any other choice

> at this time, I will probably end up going through

> with the trial SCS. I see my doctor on March 1st.

> I

> do have a lot of questions to ask first. But I

> thank

> you for emailing me with something positive. I'm

> glad

> your decision worked out for you.

> Hugs, Tracey

>

>

> --- homesblue@... wrote:

> > Tracey,

> >

> > I know that you have received alot of

> information

> > on spinal cord stimulators. I have had one for 4

> > years now and couldnt imagine living with out it.

> > No

> > it doesnt take a way from the pain totally but

> with

> > me

> > it does help. I went into it with positive

> thinking

> > I

> > wanted to get back some of my life. I had B12

> shots

> > everyday and took lots of vitamins to help before

> > surgury. I had them put on a self help tape and

> > headphones during the surgury. I was in lots of

> > pain

> > and thought that it could not hurt anymore than

> what

> > I

> > had already was experiencing. Do your research

> and

> > think it through a great deal. I know you have

> > received alot of good and bad info on scs. It has

> > taken a year or so to actually get use to the scs

> > and

> > knowing when to turn it up helps alot. Ask your

> > doctor for patient refrences and talk to them. I

> > have

> > people who are considering a scs call me and even

> > will

> > met for lunch so that they can personally see

> scars

> > see unit and get to answer questions. Well I hope

> I

> > didnt intrude on your question and take care.

> Vikki

> > --- margie545@... wrote:

>

>

> __________________________________________________

>