Thank you for your warm welcom. I've appreciated your replies. Now,

[Guest guest]

I am at the end of the trial.

I don't have much time right now, but plan to respond to your replies

and questions

this weekend. Of course, as soon as I post to a new board, our

internet went on vacation. That is, my computer programming husband

likes to play with our computers, and sometimes the play end in a

tantrum. hopefully the problems are fixed.

The trial went pretty well, except for the not so common pain I had.

Something about they had a hard time getting into my epidural space.

I have questions regarding it, and will ppost more about it (when I

should not be in bed, lol) but I did have a quick question about

another brand of stimulator.

Today the trial leads were taken out.

My doctor offered me to be in a research study (redundant, lol) for a

new SCS made by the company Advanced Bionics. This device is still in

the trial phase. Reasons: the amount I was using it was high enough

he thought I would have to have a low battery life, even with the

largest one. I really had to get that thing high to get coverage.

That, my pain complexity, and the limitations of the programmer I

would have with the permanent one. (I was instructed how to use the 4

electrodes, and manipulate the pulse width. They did that, due to

the complexity of my pain, and multiple areas of pain.

This is at the Texas Back Institue. There has been only a couple of

them done in the study so far. According to my surgeon, (although he

did not push it in any way) he brought it up for the reasons I

listed. I was still given the option of the Medtronic, but it

sounded like this other had so many benefits that would suit me.

Has anyone ever heard of the Advanced Bionics Stimulator. According

to their website, their current types of products are for hearing and

urinary incontinence. They're developing an SCS.

I agreed, and will start the protocol of teaching, and hopefully,

sooon, would start with the procedure. I am not sure if I would

have to go through another trial, but he gave me the impression I may

not have to since the SCS was helpful to me.

Oh, one of the bigger pros of this one, is that although you have a

permanent battery implanted, it can be recharged by attaching another

device on the area of the body where the battery is. Sounded like

how the RF stimulator works, but you don't need to wear anything

external during use, just while the battery is recharging. That's

the only time a person would have to wear anything external.

I most definitely liked the idea of not having battery replacement

surgery.

Another thing is that there are 8 electrodes on each single lead, as

opposed to the 4 in medtronic's.

I asked him about the ANS brand stimulator, but according to him, the

other would fit my needs better.

So i was just wondering if anyone has heard of this brand or has one,

and if so, do you know anything about it?

I hope I made the right choice to take part in the study. Half of me

feels very very lucky to have come across this doctor after years and

years of awful ones. The other half is going " egads, it's a study.

not one that has been around for awhile " . I can always change my

mind, but went with my gut on this one. Hope my gut is right ;0

I am already missing having the stimulator from the trial. Big

time.

Well, so much for that so-called quick question.

That's one thing about me you'll find out, I tend to be long winded.

And i am lucky that I do not have any problems with pain in my hands

or fingers, and usually type faster than I think.

Hoping you all are feeling ok, and again, thank you for your welcome

to this board, and if I don't get back here this weekend, you have my

permission to wring my husband's neck.

Jody

(who should have been in bed hours ago to get ready for my 4 yr old's

birthday party. Thankfully I have family that drove in to help.)

[Guest guest]

Jody

Good luck with your scs. I have a question for you about the Bionics

SCS. Do you know how often you have to recharge the battery and what

you have to use and or do to recharge the battery. The reason I am so

interested in this is because medtronics has had a rechargeable battery

now for a while but has not used it because you would haved to recharge

it every day for at least an hour it might be two and you would be

stuck near an outlet sitting the whole time. I think there were some

other reasons that I don't remember

So they decided not to use it. I am very interested in this as I have

three medtronics batteries in me and have to undergo surgery to change

the batteries every two years and unfortunately not at the same time.

Thank you for you help.

I hope this works this for you and you get the relief you so

desperately need. I will be thinking of you. Good luck once again!

Let me know when the surgery is!

Oh yeah you husband sounds like my brother - I'm lucky he doesn't live

here or I'd have to deal with him playing around with my computer all

the time. Every time he comes to visit by the time he leaves my

computer end up with with 20 different things on it and everything is

supposed to be better!!!

Jaci

..

On Mar 6, 2004, at 4:37 AM, marajode wrote:

> I am at the end of the trial. 

> I don't have much time right now, but plan to respond to your replies

> and questions

> this weekend.    Of course, as soon as I post to a new board, our

> internet went on vacation.  That is, my computer programming husband

> likes to play with our computers, and sometimes the play end in a

> tantrum.  hopefully the problems are fixed.

>

> The trial went pretty well, except for the not so common pain I had. 

> Something about they had a hard time getting into my epidural space. 

> I have questions regarding it, and will ppost more about it (when I

> should not be in bed, lol) but I did have a quick question about

> another brand of stimulator.

>

> Today the trial leads were taken out.

> My doctor offered me to be in a research study (redundant, lol) for a

> new SCS made by the company Advanced Bionics. This device is still in

> the trial phase.  Reasons: the amount I was using it was high enough

> he thought I would have to have a low battery life, even with the

> largest one.  I really had to get that thing high to get coverage. 

> That, my pain complexity, and the limitations of the programmer I

> would have with the permanent one. (I was instructed how to use the 4

> electrodes, and manipulate the pulse width.  They did that, due to

> the complexity of my pain, and multiple areas of pain. 

>

> This is at the Texas Back Institue.  There has been only a couple of

> them done in the study so far.  According to my surgeon, (although he

> did not push it in any way)  he brought it up for the reasons I

> listed.  I was still given the option of the Medtronic, but it

> sounded like this other had so many benefits that would suit me.  

>

> Has anyone ever heard of the Advanced Bionics Stimulator. According

> to their website, their current types of products are for hearing and

> urinary incontinence.   They're developing an SCS.

>

> I agreed, and will start the protocol of teaching, and hopefully,

> sooon, would start with the procedure.   I am not sure if I would

> have to go through another trial, but he gave me the impression I may

> not have to since the SCS was helpful to me. 

>

> Oh, one of the bigger pros of this one, is that although you have a

> permanent battery implanted, it can be recharged by attaching another

> device on the area of the body where the battery is.  Sounded like

> how the RF stimulator works, but you don't need to wear anything

> external during use, just while the battery is recharging.  That's

> the only time a person would have to wear anything external.  

>

> I most definitely liked the idea of not having battery replacement

> surgery. 

>

> Another thing is that there are 8 electrodes on each single lead, as

> opposed to the 4 in medtronic's. 

>

> I asked him about the ANS brand stimulator, but according to him, the

> other would fit my needs better.

>

> So i was just wondering if anyone has heard of this brand or has one,

> and if so, do you know anything about it?

> I hope I made the right choice to take part in the study.  Half of me

> feels very very lucky to have come across this doctor after years and

> years of awful ones.  The other half is going " egads, it's a study. 

> not one that has been around for awhile " .   I can always change my

> mind, but went with my gut on this one.   Hope my gut is right ;0

>

> I am already missing having the stimulator from the trial.   Big

> time.  

>

> Well, so much for that so-called quick question.  

> That's one thing about me you'll find out, I tend to be long winded. 

> And i am lucky that I do not have any problems with pain in my hands

> or fingers, and usually type faster than I think.

>

> Hoping you all are feeling ok, and again, thank you for your welcome

> to this board, and if I don't get back here this weekend, you have my

> permission to wring my husband's neck.

>

> Jody 

> (who should have been in bed hours ago to get ready for my 4 yr old's

> birthday party.   Thankfully I have family that drove in to help.)

>

>

>

>

>

>

[Guest guest]

Hi Jaci,

I am no sure about much of this. I have been searching endlessly

about this, and am just finding things that say the company is in

development of product to relieve intractable pain. ugh. I'm so

impatient about this. I am going to call my surgeon's office

tomorrow and see if there is anywhere he can direct me or send me

before I go to this teaching session I am supposed to attend.

I also am going to e-mail the company and see if they have any

answers or something to send.

About recharging the battery, i jokingly asked my doc " Gee, would I

be like my cell phone, plugged into an outlet recharging , sitting

next to the wall? " . He said no, but then how on earth does it

work? He said it was place over the area where the implanted battery

is in my body. Then again, I may be wrong, it was a little

blurry. Not confusing, just like i say, still taken off guard. I

didn't even THINK to ask about how the others that they've done have

been working out. (they've done a small number of them)

I do wish I'd had more of my wits about me. I was his last

appointment on Friday. He had no info to give me, he works at two

diferent branches of the Texas Back Institute. I guess what he has

is at the other place. I don't think he was expecting me to be a

canditate. He spent a lot of time with me, but I was so taken off

gaurd (and disappointed that I would not have the stimulator for a

longer amount of time, even though this was my choice, but still, I

knew it was helping me, but i know even more so after going through

this weekend without it) (he said I could still, but after he brought

this up, a lot of time was spent talking about how the electodes work

differently than Medtronic,the control I'd have, etc. I was also a

little overwhelmed about what sounded like such a whole better deal,

I'm surprised I had the wits about me to even ask what I did to begin

with. My grandmother was with me. I'm going to call her and see if

she remembers what he said about the battery. (while waiting for the

doctor to call me and any other info)

I don't want to be so desperate for relief that I jump into this too

quickly. Although I've said I want to go through with this, i can

always change my mind

I hope to find out soon when the surgery is.

When I find out more about this, I'll definitely let you know.

So you actually have 3 batteries at once? wow. is it something that

is bothersome or that is super noticeable to you? Are the three

the largest sized ones? I didn't even know about having more than

one battery at once. I take it that it is very helpful for you? Do

you have multiple areas of pain, and have both leads? Are you like

me and require a very high degree of stimulation to get effective

pain relief?

I'm sorry you have to go through so much. I wish they could do the

surgeries at once. It would be wonderful if this turns out as good

as it sounds, so that one day you wouldn't haave to go through so

many surgeries.

I hope you have a good week, and a comfortable one at that.

Jody

[Guest guest]

Jody

I have nerve damage to two nerves and rsd in my right leg. I was part

of a trial with medtronics for the peripheral nerve stimulator. Since

I have two nerve that are injured they had to put two if them in.

Peripheral nerve stimulators if you don't know what they are, are like

scs but are attached to specific nerves - they are done in legs. Then

I had to have a SCS stim put in for the rsd and to help with any other

pain I had not taken care of by the peripheral nerve stims. It really

stinks that they can't change the batteries at the same time the

doctors said that my insurance company would pay for it if the battery

had less than 4 months on it. There is a chance that this year when I

have to get the batteries in my two peripheral nerve stimulators

replaced that they may be able to change them both at the same time but

they can't promise it. I am keeping my fingers crossed

I can understand why you still have more questions and some of things

he said you don't quite remember. You were probably still trying to

process everything he was saying. Someone once said to me jokingly you

should bring a take recorder and I laughed and then I said you know

what that is a real good idea. I never have but you know what it

really isn't that bad of an idea. Hey, you also have everything the

doctors says so you can go back and say I have you on tape saying it.

But it would probably come in handy if you could go home and sit down

and replay the visit and take it in again. Write down all your

questions, that way you are ready so when you see him you can check

them off as you ask him. That what I do when I am worried I will

forget something. Do you know anything about the recovery? You have

to go to a teaching session?

I know you will make the right decision whatever that maybe for you.

It sounds like you know how to weigh all the positives and the

negatives and figure out what is the best thing for you and your body.

I hope that it works for you. Please let me know when you find out any

new news.

Thanks for the help and when you find out for sure if you could let me

know.

Take care

Jaci

On Mar 8, 2004, at 4:48 AM, Jody wrote:

> Hi Jaci,

>

> I am no sure about much of this.  I have been searching endlessly

> about this, and am just finding things that say the company is in

> development of product to relieve intractable pain.  ugh.  I'm so

> impatient about this.  I am going to call my surgeon's office

> tomorrow and see if there is anywhere he can direct me or send me

> before I go to this teaching session I am supposed to attend.

> I also am going to e-mail the company and see if they have any

> answers or something to send.   

>

> About recharging the battery, i jokingly asked my doc " Gee, would I

> be like my cell phone, plugged into an outlet recharging , sitting

> next to the wall? " .    He said no, but then how on earth does it

> work?  He said it was place over the area where the implanted battery

> is in my body.   Then again, I may be wrong, it was a little

> blurry.   Not confusing, just like i say, still taken off guard.  I

> didn't even THINK to ask about how the others that they've done have

> been working out.  (they've done a small number of them)

>

> I do wish I'd had more of my wits about me.  I was his last

> appointment on Friday.  He had no info to give me, he works at two

> diferent branches of the Texas Back Institute.  I guess what he has

> is at the other place.  I don't think he was expecting me to be a

> canditate.  He spent a lot of time with me, but I was so taken off

> gaurd (and disappointed that I would not have the stimulator for a

> longer amount of time, even though this was my choice, but still, I

> knew it was helping me, but i know even more so after going through

> this weekend without it) (he said I could still, but after he brought

> this up, a lot of time was spent talking about how the electodes work

> differently than Medtronic,the control I'd have, etc.   I was also a

> little overwhelmed about what sounded like such a whole better deal,

> I'm surprised I had the wits about me to even ask what I did to begin

> with.  My grandmother was with me.   I'm going to call her and see if

> she remembers what he said about the battery. (while waiting for the

> doctor to call me and any other info)

>

>

> I don't want to be so desperate for relief that I jump into this too

> quickly.  Although I've said I want to go through with this, i can

> always change my mind  

>

> I hope to find out soon when the surgery is.

>

> When I find out more about this, I'll definitely let you know.

>   

> So you actually have 3 batteries at once?  wow.  is it something that

> is bothersome or that is super noticeable to you?    Are the three

> the largest sized ones?  I didn't even know about having more than

> one battery at once.  I take it that it is very helpful for you?  Do

> you have multiple areas of pain, and have both leads?  Are you like

> me and require a very high degree of stimulation to get effective

> pain relief?      

>

> I'm sorry you have to go through so much.   I wish they could do the

> surgeries at once.   It would be wonderful if this turns out as good

> as it sounds, so that one day you wouldn't haave to go through so

> many surgeries.

>

> I hope you have a good week, and a comfortable one at that.

>

> Jody

>

>

>

>

>

>

>