Hi I'm NEW

[Guest guest]

Forgot to ask how long have you had to wait to get your SCS in?

hi i'm new

HI I'M CINDI, I AM WAITING TO GET A SURGERY DATE FOR MY PERM SCS, I

SEEMS LIKE IT HAS TAKEN FOREVER. I WAS WONDERING IS THERE ANYTHING I

COULD GET TO HELP IN MY RECOVERY, I BOUGHT A GRAPPER, I THOUGHT THAT

WOULD BE HELPFUL. ANY OTHER SUGGESTIONS WOULD BE HELPFUL. I WILL LET

YOU KNOW WHEN THE SURGERY WILL WILL BE THANKS IN ADVANCE

CINDI

[Guest guest]

Hey Cindi!

My name is Kathy G. and I am one of the owners of this wonderful group.

Mike is my co-owner and the group's founder.

I have had two stims now. I had one placed in 15 years ago, and one placed

in 7 years ago. They both are for RSD.

I found the best thing that I ever could of gotten for the recuperation

period is a body pillow. Some are expensive and some are cheap. I would

strongly suggest that you put some money out for one in the middle range....I

got

one about $35.00 and it made my world so much more comfortable!! I didn't have

it for the first recuperation, but did for the second stim placement, and

what a difference that it made for me!!!!

Another thing that I did was to make sure that all my wash, and cleaning was

up to date prior to the surgery. Of course the wash will be there after the

surgery, during your recuperation, but if you don't have a ton before the

surgery, you can keep it to a minimum of one load per day...for the person who

is doing it for you.

When I had my first stim, I also had both arms in casts. Well..one in a

cast after a falling down the basement steps, I broke both arms, but with RSD,

you really shouldn't cast anything..but the fx was so bad..it was that or

surgery...so we opted for the cast. The other arm was the reason for the stim.

I have horrendous RSD in the wrist and hand.,

Because of this, I had to make sure that everyone was perfectly in order for

my daughter. My parents, of course, were a great help, but my husband, now

ex-husband now was a real " gem " and refused to change the baby or bathe her

as he worked outside the home and made the money...it was my job to take care

of the home and " the kid " . He was never like this prior to marrying him I

never would of!!! What I am getting to is this....if you have any wee ones,

you might want to put outfits together for them...make sure you have enough

diapers purchased, clean wash, onsies...etc...

I made sure that all my shopping for gifts was done and all was wrapped with

stickies on the outside for whom they were for...for example, I had a ton of

birthdays a few days to a few weeks after the surgery...and I was not able

to attend the parties...or if I could..I was in no shape to shop for them...so

I just purchased it, wrapped it and made sure the card was attached. This

might be a great idea for Christmas too. I am having surgery myself in

November again...and I have more than half of my Christmas shopping done,

wrapped

and card attached on the outside for who it is for. As I am disabled as so many

of us are in the group, another thing I do is computer shopping. I actually

prefer to buy online purchases, and then all I do is just have the bags

ready to place them in and don't even need to wrap them. I do have those bags

with the names on them all ready though...as it will prevent the bending and

stooping down to do all that work.

I wrote to my child's teachers and informed them of what was going on..so if

Kate was having a bad day...or seemed upset, they would know why and could

help through this tough time...and to please let me know ASAP.

I know some folks will think that this sounds crazy and a bit anal, but it

truly works so well or me, that I had to share it with you.

I hope these ideas helped you, Cindi. You MUST remember that the only

" dumb " ' question that is the one that is NOT asked .

I wish you all the best and truly hope that the stim is a wonderful success

for you. I I can be of any help to you, please let me know.

Gentle hugs to all,

Kathy G.

Group Co-owner

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

[Guest guest]

>IT TOOK ALMOST THREE MONTHS, I HAD MY TRIAL IN JULY, I CANT

BELIEVE HOW LONG IT TAKES. CINDI

> Forgot to ask how long have you had to wait to get your SCS in?

>

> hi i'm new

>

>

> HI I'M CINDI, I AM WAITING TO GET A SURGERY DATE FOR MY PERM SCS,

I

> SEEMS LIKE IT HAS TAKEN FOREVER. I WAS WONDERING IS THERE

ANYTHING I

> COULD GET TO HELP IN MY RECOVERY, I BOUGHT A GRAPPER, I THOUGHT

THAT

> WOULD BE HELPFUL. ANY OTHER SUGGESTIONS WOULD BE HELPFUL. I WILL

LET

> YOU KNOW WHEN THE SURGERY WILL WILL BE THANKS IN ADVANCE

> CINDI

>

>

>

>

>

>

[Guest guest]

Wow oh wow oh wow that is a very very long time! why on earth did they make you

wait so long? Is that typical? Was it an insurance issue or something? That is

just unbelievable. I am glad you are going for your SCS soon and hope you will

do well with it! You deserve it after that long wait!

hi i'm new

>

>

> HI I'M CINDI, I AM WAITING TO GET A SURGERY DATE FOR MY PERM SCS,

I

> SEEMS LIKE IT HAS TAKEN FOREVER. I WAS WONDERING IS THERE

ANYTHING I

> COULD GET TO HELP IN MY RECOVERY, I BOUGHT A GRAPPER, I THOUGHT

THAT

> WOULD BE HELPFUL. ANY OTHER SUGGESTIONS WOULD BE HELPFUL. I WILL

LET

> YOU KNOW WHEN THE SURGERY WILL WILL BE THANKS IN ADVANCE

> CINDI

>

>

>

>

>

>

[Guest guest]

I FINALLY HAVE A SURGERY DATE, OCT 2, I CANT BELIEVE IT, SO MUCH TO

DO TO GET READY, ESPECIALLY AT WORK, THANKS FOR ALL OF YOUR GOOD

WISHES- CINDI

> >IT TOOK ALMOST THREE MONTHS, I HAD MY TRIAL IN JULY, I CANT

> BELIEVE HOW LONG IT TAKES. CINDI

> > Forgot to ask how long have you had to wait to get your SCS in?

> >

> > hi i'm new

> >

> >

> > HI I'M CINDI, I AM WAITING TO GET A SURGERY DATE FOR MY PERM

SCS,

> I

> > SEEMS LIKE IT HAS TAKEN FOREVER. I WAS WONDERING IS THERE

> ANYTHING I

> > COULD GET TO HELP IN MY RECOVERY, I BOUGHT A GRAPPER, I THOUGHT

> THAT

> > WOULD BE HELPFUL. ANY OTHER SUGGESTIONS WOULD BE HELPFUL. I

WILL

> LET

> > YOU KNOW WHEN THE SURGERY WILL WILL BE THANKS IN ADVANCE

> > CINDI

> >

> >

> >

> >

> >

> >

[Guest guest]

congrads I know your happy. look forward to you keeping us posted

Mike Group owner

> > >IT TOOK ALMOST THREE MONTHS, I HAD MY TRIAL IN JULY, I CANT

> > BELIEVE HOW LONG IT TAKES. CINDI

> > > Forgot to ask how long have you had to wait to get your SCS

in?

> > >

> > > hi i'm new

> > >

> > >

> > > HI I'M CINDI, I AM WAITING TO GET A SURGERY DATE FOR MY PERM

> SCS,

> > I

> > > SEEMS LIKE IT HAS TAKEN FOREVER. I WAS WONDERING IS THERE

> > ANYTHING I

> > > COULD GET TO HELP IN MY RECOVERY, I BOUGHT A GRAPPER, I

THOUGHT

> > THAT

> > > WOULD BE HELPFUL. ANY OTHER SUGGESTIONS WOULD BE HELPFUL. I

> WILL

> > LET

> > > YOU KNOW WHEN THE SURGERY WILL WILL BE THANKS IN ADVANCE

> > > CINDI

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Cindi

 

Good Luck

 

Sue C

Moderator

From: CINDI <cinhoo66@...>

Subject: Re: hi i'm new

Stimulator

Date: Friday, September 26, 2008, 2:10 AM

I FINALLY HAVE A SURGERY DATE, OCT 2, I CANT BELIEVE IT, SO MUCH TO

DO TO GET READY, ESPECIALLY AT WORK, THANKS FOR ALL OF YOUR GOOD

WISHES- CINDI

> >IT TOOK ALMOST THREE MONTHS, I HAD MY TRIAL IN JULY, I CANT

> BELIEVE HOW LONG IT TAKES. CINDI

> > Forgot to ask how long have you had to wait to get your SCS in?

> >

> > hi i'm new

> >

> >

> > HI I'M CINDI, I AM WAITING TO GET A SURGERY DATE FOR MY PERM

SCS,

> I

> > SEEMS LIKE IT HAS TAKEN FOREVER. I WAS WONDERING IS THERE

> ANYTHING I

> > COULD GET TO HELP IN MY RECOVERY, I BOUGHT A GRAPPER, I THOUGHT

> THAT

> > WOULD BE HELPFUL. ANY OTHER SUGGESTIONS WOULD BE HELPFUL. I

WILL

> LET

> > YOU KNOW WHEN THE SURGERY WILL WILL BE THANKS IN ADVANCE

> > CINDI

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi - welcome to our group! Congrats on the lbs you have lost so far and good luck on the rest of the journey!!

New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out!

[Guest guest]

<<I'm new here. So far I lost 60 pounds and now I have 100 left to go>>

Congrats on your weight loss so far and welcome to the group!

--332.8/280/158

_,_._,___

[Guest guest]

Welcome .

I'm exhausted so I will answer ur questions tomorrow, but wanted to say welcome

in the meantime.

Deanna

Sent from my iPhone

On Jan 17, 2009, at 8:25 PM, " " <kenya@...> wrote:

Hello, I am new and thought I would introduce myself. My name is . I have

had lower back pain, mostly pain in my hip that radiates down to my foot for the

last year. I went to a PM doctor and have been on Oxycotin, we have tried

injections in the hip, back and everywhere else, I have also had botox shots but

nothing has worked. My dr has said that I need a internal stimulator. I thought

I would come here to see if any of you have had one and how bad was the

procedure, what was the worst part? Are you happy with the results? I would love

to hear any stories encouraging or not. I really look forward to hearing from

all of you and am thankful that there is a group I can come to.

Thanks so much,

melissa

[Guest guest]

Hello, , and WELCOME!!

I am so happy that you have joined our awesome and wonderful group!

My name is Kathy G. I am the Co-Owner of this fantastic group. The founder

is Mike. He is a great and caring guy. You will come to see and feel the

support, friendships and the best medicine...humor in this group of wonderful

folks.

Let me give you a wee bit information about myself and my stimulators. One

thing you will see from me is that I NEVER lie about the stims or the

pumps...I tell it like it is...the good and the bad...because I would be really

upset if I was looking into one and I only got the " polyana " version. I can't

stand when people only tell the positive side of things....like they are in a

fairy tale land...the truth is what we have here....this is another plus about

us.

Okay...I have had RSD now for 26 years. It causes horrendous burning pain

in the affected limb(s). I have it througout my body....the worst is my left

foot and ankle. I have had two stims placed in for RSD. My first one was

placed in 15 years ago. It was like a miracle to me!!!! The trial worked very

well...so they were going to do the permanent one. Before I was given the

anesthesia...all I could do was cry from the pain...when I woke up all I could

do was cry from sheer joy that the pain was gone!!! I had this pain for

almost 1 1/2 years and within a matter of two hours...gone!

Now, comes my second one for my legs. I was able to put my foot on the

ground without sheer agony, but as for the pain in the leg...it didn't do much

for it.....I have had it looked at by two different neuro surgeons, I have had

surgery to try to fix it...to see if it moved...which it didn't. Many people

ask me if I knew how this one would of turned out prior to having the second

one put in, would I of still done it. After a while of thinking about it, I

would honestly say yes. I am now able to put my foot down on the floor, as

prior to it being implanted...I wouldn't even dare try due to the agonizing

burn that would shoot up my leg.

I was told by two of the most reputable neurosurgeons in the country...one

in Jefferson University Hospital and the other in Hopkins that

they truly beleive that my RSD is so advanced that they don't think anything at

this point would help my ankle, and they among many others strongly suggest a

below the knee amputation. (This is very unusual for RSD patients...but

since the ankle is just so severe...not much else can be done...I don't want to

scare any other RSD patient reading this....there is alot of help out there

for RSD patients...you must catch it early enough to do it....)

I also wanted to talk to you about a pain pump, . I know you are not

asking about one, but the more information you get...the better, right?

I also had a pain pump placed in. Many, Many people that I know who have

them SWEAR by them saying they can't imagine not having it in...the pain is so

much better! Here again, , I will be brutally honest with you. I

LOVED my pump when it worked. Unfortunatly though, there were times that it

didn't work...for serious reasons and I wound up in withdrawl from strong

narcs.

The first time was when the pump ran dry and put me into a serious

withdrawl from strong narcs. I never missed an appointment. I was extremely

anal

with the pump, as I had morphine, bubivicaine and baclofen for severe spasms.

When we figured out that the pump had run dry...I was told by the company

medtronic, that this is a fluke and never, ever happens. So..okay, I had the

pump re-filled. Several months went by...it worked great. Unfortunately,

though, after returning for another refill, I was told that the prvious refill

never dispenced any of the meds. I had thought that I had the stomach flu a

few days after I had the pump refilled, but once again it was withdrawal.

I had to have it removed due to the second malfunction. Now, please

remember what I said...some folks swear by their pump and would NEVER, EVER

give

their pumps away.

As far as the procedure in placing the stims, . The first one was a

breeze. I think the first one was so much easier for me since I was so much

thinner back then. Presently, I am taking a med whose major side effect is

" rapid weight gain " ...well..they were not kidding...I have gained over 200

pounds in the past 2 years...of course it couldn't be rapid weight loss..oh no!

LOL I think that the second stim placement was a wee bit more painful like

i said due to the extra weight. The recuperation period is about 6-8 weeks.

The most IMPORTANT AND VITAL THING TO REMEMBER IS not to twist, bend or

lift anything heavier than 10 pounds. If you follow these basic rules, you

should be fine. As far as pain goes, I had to take percocet for only two days

for the surgical pain.

I hope I have answered all your questions and then some, . I am

positive that even if I missed one, I am sure that you will be receiving a ton

of

replies from alot of others folks in our group....like I told you...our

group is full of great and caring folks.

If I can be of any further help, or you need a shoulder or an ear...please

don't hesitate to contact me...._....KGavi@..._

(mailto:me........KGavi@...) or eyes for _Lenny@..._

(mailto:Lenny@...)

or (215)783-9066...this is my cell.

Once again, Welcome to our group.

Take care.

Kathy G

Group Co-Owner

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

[Guest guest]

Hi

I wanted to say welcome. I have had chronic back, hip leg and foot pain for the

last 8 years or so. I had a 2 level lumbar fusion 2 years ago which was not

successful. I had the SCS implanted December 8th and I am still recovering from

the implant.

I am pleased with the results so far in my leg and hip. I have not gotten relief

in my mid back. The rep told me they shoot to relieve 50% of your pain or

better. If they get that accomplished then they have achieved their goal. What I

like about it is the fact that it is much more constant relief than the pills or

not knowing from day to day if my pain is going to be horrible or if it is going

to be a good day or not.

If my pain levels are high I turn up my stim and so far I am able to relieve 90%

of the leg pain with using the stim. For me that is a big plus.

It is a big procedure and a surgery and not to be decided lightly. I had to do

some serious thinking and research before I decided that it was for me. I mean

once this thing is inside your body as the rep told me You are married to this

thing from now on.

To me the worst part has been healing from the incisions. I have had a hard time

with the incision over the implant and battery being very tender even up until

just a few days ago. I had a big stitch work its way out the other day that we

had to clip and then it got better maybe that was causing the discomfort to some

extent, I dont know. I do know that I could not stand for anything to touch it

really for some time.

The no bending and twisting parts have been pretty easy for me to do. The no

lifting has been a pain! 5 pounds is nothing. The do not reach over my head is a

big deal too. I am short so everything in my top cabinets is over my head lol so

I am constantly calling for someone to get something down for me.

I am counting down the days until my 8 weeks post op are over. I am now pretty

much healed up pain and discomfort wise. I would say yes it is worth it for the

most part for me. However I would do some research and think about it long and

hard before I made that decision if I were you. You are doing the rihgt thing

asking here and getting everyone's experience.

Also go on the net and search for SCS and complications. I also saw the

procedure on video. I think we have it in the files now so if you want to see

that you can go and do that too.

If you have any questions let me know

Kim

Hi I'm new

Hello, I am new and thought I would introduce myself. My name is . I

have had lower back pain, mostly pain in my hip that radiates down to my foot

for the last year. I went to a PM doctor and have been on Oxycotin, we have

tried injections in the hip, back and everywhere else, I have also had botox

shots but nothing has worked. My dr has said that I need a internal stimulator.

I thought I would come here to see if any of you have had one and how bad was

the procedure, what was the worst part? Are you happy with the results? I would

love to hear any stories encouraging or not. I really look forward to hearing

from all of you and am thankful that there is a group I can come to.

Thanks so much,

melissa

[Guest guest]

Kim and Kathy thank you sooo much for taking the time to write to me. I have

kept your emails so I can re-read them when I get nervous.

I was wondering was everyone here that had the surgery an outpatient or did you

stay the night in the hospital?

I had the lapband last year and was supposed to go home that day but due to

problems with the anesthesia I ended up in the hospital for two days. Will I be

put under for this procedure?

thanks so much

melissa

Re: Hi I'm new

Hello, , and WELCOME!!

I am so happy that you have joined our awesome and wonderful group!

My name is Kathy G. I am the Co-Owner of this fantastic group. The founder

is Mike. He is a great and caring guy. You will come to see and feel the

support, friendships and the best medicine...humor in this group of wonderful

folks.

Let me give you a wee bit information about myself and my stimulators. One

thing you will see from me is that I NEVER lie about the stims or the

pumps...I tell it like it is...the good and the bad...because I would be

really

upset if I was looking into one and I only got the " polyana " version. I can't

stand when people only tell the positive side of things....like they are in a

fairy tale land...the truth is what we have here....this is another plus about

us.

Okay...I have had RSD now for 26 years. It causes horrendous burning pain

in the affected limb(s). I have it througout my body....the worst is my left

foot and ankle. I have had two stims placed in for RSD. My first one was

placed in 15 years ago. It was like a miracle to me!!!! The trial worked very

well...so they were going to do the permanent one. Before I was given the

anesthesia...all I could do was cry from the pain...when I woke up all I could

do was cry from sheer joy that the pain was gone!!! I had this pain for

almost 1 1/2 years and within a matter of two hours...gone!

Now, comes my second one for my legs. I was able to put my foot on the

ground without sheer agony, but as for the pain in the leg...it didn't do much

for it.....I have had it looked at by two different neuro surgeons, I have had

surgery to try to fix it...to see if it moved...which it didn't. Many people

ask me if I knew how this one would of turned out prior to having the second

one put in, would I of still done it. After a while of thinking about it, I

would honestly say yes. I am now able to put my foot down on the floor, as

prior to it being implanted...I wouldn't even dare try due to the agonizing

burn that would shoot up my leg.

I was told by two of the most reputable neurosurgeons in the country...one

in Jefferson University Hospital and the other in Hopkins that

they truly beleive that my RSD is so advanced that they don't think anything

at

this point would help my ankle, and they among many others strongly suggest a

below the knee amputation. (This is very unusual for RSD patients...but

since the ankle is just so severe...not much else can be done...I don't want

to

scare any other RSD patient reading this....there is alot of help out there

for RSD patients...you must catch it early enough to do it....)

I also wanted to talk to you about a pain pump, . I know you are not

asking about one, but the more information you get...the better, right?

I also had a pain pump placed in. Many, Many people that I know who have

them SWEAR by them saying they can't imagine not having it in...the pain is so

much better! Here again, , I will be brutally honest with you. I

LOVED my pump when it worked. Unfortunatly though, there were times that it

didn't work...for serious reasons and I wound up in withdrawl from strong

narcs.

The first time was when the pump ran dry and put me into a serious

withdrawl from strong narcs. I never missed an appointment. I was extremely

anal

with the pump, as I had morphine, bubivicaine and baclofen for severe spasms.

When we figured out that the pump had run dry...I was told by the company

medtronic, that this is a fluke and never, ever happens. So..okay, I had the

pump re-filled. Several months went by...it worked great. Unfortunately,

though, after returning for another refill, I was told that the prvious refill

never dispenced any of the meds. I had thought that I had the stomach flu a

few days after I had the pump refilled, but once again it was withdrawal.

I had to have it removed due to the second malfunction. Now, please

remember what I said...some folks swear by their pump and would NEVER, EVER

give

their pumps away.

As far as the procedure in placing the stims, . The first one was a

breeze. I think the first one was so much easier for me since I was so much

thinner back then. Presently, I am taking a med whose major side effect is

" rapid weight gain " ...well..they were not kidding...I have gained over 200

pounds in the past 2 years...of course it couldn't be rapid weight loss..oh

no!

LOL I think that the second stim placement was a wee bit more painful like

i said due to the extra weight. The recuperation period is about 6-8 weeks.

The most IMPORTANT AND VITAL THING TO REMEMBER IS not to twist, bend or

lift anything heavier than 10 pounds. If you follow these basic rules, you

should be fine. As far as pain goes, I had to take percocet for only two days

for the surgical pain.

I hope I have answered all your questions and then some, . I am

positive that even if I missed one, I am sure that you will be receiving a ton

of

replies from alot of others folks in our group....like I told you...our

group is full of great and caring folks.

If I can be of any further help, or you need a shoulder or an ear...please

don't hesitate to contact me...._....KGavi@..._

(mailto:me........KGavi@...) or eyes for _Lenny@..._

(mailto:Lenny@...)

or (215)783-9066...this is my cell.

Once again, Welcome to our group.

Take care.

Kathy G

Group Co-Owner

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

[Guest guest]

no problem, !

So glad to help you out, hon.

First...congrats on your weight loss...good for you!

For me...for both stims, I had general Anesthesia. I was in the hospital

for the first one for 5 days...but that was 15 years ago...for the most recent

one..only overnight.

Write or call me anytime, hon.

Hang in!

Gentle hugs to you and all,

Kathy G.

Co-Owner

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

[Guest guest]

Hello. My name is Dede and I've had RSD for over three years now. I had a

stimulator implanted due to the fact that I was allergic to many meds and nerve

blocks didn't help. My trial was great!!! People said that they had not seen me

smile like that since before my accident. However since getting the stim

implanted in 09/06, I had nothing but problems. First, the lead slipped and a

neurosurgeon went back in to make it more stable. He took out too much bone and

left me with a spinal leak that took me over two to get fixed, by another

surgeon. CSF leaks cause tremendous headaches daily when you're in a sitting or

standing position. The headaches are like no other. I also had to have a Spinal

Fusion to fix the neck instability. If I could have had the right surgeon to do

it to begin with, I believe I could have had success. When I had the CSF

repaired last month, I had them to take the stim out. It has caused me too much

pain besides what I already go

through. It also caused my RSD to spread. Just do your research and be sure

your surgeon has done this before. A lot of people have had success but

unfortunately, I wasn't one of them. You will never know until you try. Good

luck!

From: <kenya@...>

Subject: Hi I'm new

Stimulator

Date: Sunday, January 18, 2009, 4:25 AM

Hello, I am new and thought I would introduce myself. My name is . I have

had lower back pain, mostly pain in my hip that radiates down to my foot for the

last year. I went to a PM doctor and have been on Oxycotin, we have tried

injections in the hip, back and everywhere else, I have also had botox shots but

nothing has worked. My dr has said that I need a internal stimulator. I thought

I would come here to see if any of you have had one and how bad was the

procedure, what was the worst part? Are you happy with the results? I would love

to hear any stories encouraging or not. I really look forward to hearing from

all of you and am thankful that there is a group I can come to.

Thanks so much,

melissa

[Guest guest]

Mellisa nice to meet you I am Mike group owner I had Idet surgery l5

s1 anterior lumbar fusion I was left with nerve pain down both legs.

I had Stimulator put in 2002 It has reduced my nerve pain down legs

but doesnt help my low back doctor tried getting me bsck pain reief

but it caused serious pain in my back so doctor has both legs leads

and has me on pain meds for back pain. Getting a stimulator might

give you all relief or half reilef some didnt work out. Get the

sugery is not like getting back fusion surgery your awake with stim

surgery you are numb up and doctor gets your feeback to where leads

placement All I can say it cant hurt trying it. Mike Group Owner ---

In Stimulator , DeDe Calfee <dedecalfee@...> wrote:

>

> Hello. My name is Dede and I've had RSD for over three years now. I

had a stimulator implanted due to the fact that I was allergic to

many meds and nerve blocks didn't help. My trial was great!!! People

said that they had not seen me smile like that since before my

accident. However since getting the stim implanted in 09/06, I had

nothing but problems. First, the lead slipped and a neurosurgeon went

back in to make it more stable. He took out too much bone and left me

with a spinal leak that took me over two to get fixed, by another

surgeon. CSF leaks cause tremendous headaches daily when you're in a

sitting or standing position. The headaches are like no other. I also

had to have a Spinal Fusion to fix the neck instability. If I could

have had the right surgeon to do it to begin with, I believe I could

have had success. When I had the CSF repaired last month, I had them

to take the stim out. It has caused me too much pain besides what I

already go

> through. It also caused my RSD to spread. Just do your research

and be sure your surgeon has done this before. A lot of people have

had success but unfortunately, I wasn't one of them. You will never

know until you try. Good luck!

>

>

>

> From: <kenya@...>

> Subject: Hi I'm new

> Stimulator

> Date: Sunday, January 18, 2009, 4:25 AM

>

>

>

>

>

>

> Hello, I am new and thought I would introduce myself. My name is

. I have had lower back pain, mostly pain in my hip that

radiates down to my foot for the last year. I went to a PM doctor and

have been on Oxycotin, we have tried injections in the hip, back and

everywhere else, I have also had botox shots but nothing has worked.

My dr has said that I need a internal stimulator. I thought I would

come here to see if any of you have had one and how bad was the

procedure, what was the worst part? Are you happy with the results? I

would love to hear any stories encouraging or not. I really look

forward to hearing from all of you and am thankful that there is a

group I can come to.

>

> Thanks so much,

>

> melissa

>

>

[Guest guest]

Kim you had same problem i had with stim stiches mine broke through

had to go to doctor office get it re done I also get just legd relief

with stimulator. I bought a grabber you see in stores to pick up

items. Mike group owner

>

> Hi

> I wanted to say welcome. I have had chronic back, hip leg and foot

pain for the last 8 years or so. I had a 2 level lumbar fusion 2

years ago which was not successful. I had the SCS implanted December

8th and I am still recovering from the implant.

> I am pleased with the results so far in my leg and hip. I have not

gotten relief in my mid back. The rep told me they shoot to relieve

50% of your pain or better. If they get that accomplished then they

have achieved their goal. What I like about it is the fact that it is

much more constant relief than the pills or not knowing from day to

day if my pain is going to be horrible or if it is going to be a good

day or not.

> If my pain levels are high I turn up my stim and so far I am able

to relieve 90% of the leg pain with using the stim. For me that is a

big plus.

> It is a big procedure and a surgery and not to be decided lightly.

I had to do some serious thinking and research before I decided that

it was for me. I mean once this thing is inside your body as the rep

told me You are married to this thing from now on.

> To me the worst part has been healing from the incisions. I have

had a hard time with the incision over the implant and battery being

very tender even up until just a few days ago. I had a big stitch

work its way out the other day that we had to clip and then it got

better maybe that was causing the discomfort to some extent, I dont

know. I do know that I could not stand for anything to touch it

really for some time.

> The no bending and twisting parts have been pretty easy for me to

do. The no lifting has been a pain! 5 pounds is nothing. The do not

reach over my head is a big deal too. I am short so everything in my

top cabinets is over my head lol so I am constantly calling for

someone to get something down for me.

> I am counting down the days until my 8 weeks post op are over. I am

now pretty much healed up pain and discomfort wise. I would say yes

it is worth it for the most part for me. However I would do some

research and think about it long and hard before I made that decision

if I were you. You are doing the rihgt thing asking here and getting

everyone's experience.

>

> Also go on the net and search for SCS and complications. I also saw

the procedure on video. I think we have it in the files now so if you

want to see that you can go and do that too.

>

> If you have any questions let me know

>

> Kim

> Hi I'm new

>

>

> Hello, I am new and thought I would introduce myself. My name is

. I have had lower back pain, mostly pain in my hip that

radiates down to my foot for the last year. I went to a PM doctor and

have been on Oxycotin, we have tried injections in the hip, back and

everywhere else, I have also had botox shots but nothing has worked.

My dr has said that I need a internal stimulator. I thought I would

come here to see if any of you have had one and how bad was the

procedure, what was the worst part? Are you happy with the results? I

would love to hear any stories encouraging or not. I really look

forward to hearing from all of you and am thankful that there is a

group I can come to.

>

> Thanks so much,

>

> melissa

>

>

[Guest guest]

I had mine done in December. It was done pretty much under general. I was sort

of awake that I could answer thier questions about things but I don't remember a

blooming thing about it. Which is the way I wanted it. Now with the trial I

remember being awake to answer questions about where I felt a certain tingle

when they changed the stim programming.

Mine was done out patient both times. I was in and out by that afternoon. I was

given IV antibiotics when I went in and had to take them for a week or so

afterwards. The yucky thing after the trial was I could not take a bath or

shower for like the whole week until it was taken out. They have the wires

temporarily attached to you inside. The other stuff is attached to your back

outside. You have a controller that they show you how to use.

Any more questions feel free to ask

Re: Hi I'm new

Hello, , and WELCOME!!

I am so happy that you have joined our awesome and wonderful group!

My name is Kathy G. I am the Co-Owner of this fantastic group. The founder

is Mike. He is a great and caring guy. You will come to see and feel the

support, friendships and the best medicine...humor in this group of wonderful

folks.

Let me give you a wee bit information about myself and my stimulators. One

thing you will see from me is that I NEVER lie about the stims or the

pumps...I tell it like it is...the good and the bad...because I would be

really

upset if I was looking into one and I only got the " polyana " version. I can't

stand when people only tell the positive side of things....like they are in a

fairy tale land...the truth is what we have here....this is another plus about

us.

Okay...I have had RSD now for 26 years. It causes horrendous burning pain

in the affected limb(s). I have it througout my body....the worst is my left

foot and ankle. I have had two stims placed in for RSD. My first one was

placed in 15 years ago. It was like a miracle to me!!!! The trial worked very

well...so they were going to do the permanent one. Before I was given the

anesthesia...all I could do was cry from the pain...when I woke up all I could

do was cry from sheer joy that the pain was gone!!! I had this pain for

almost 1 1/2 years and within a matter of two hours...gone!

Now, comes my second one for my legs. I was able to put my foot on the

ground without sheer agony, but as for the pain in the leg...it didn't do much

for it.....I have had it looked at by two different neuro surgeons, I have had

surgery to try to fix it...to see if it moved...which it didn't. Many people

ask me if I knew how this one would of turned out prior to having the second

one put in, would I of still done it. After a while of thinking about it, I

would honestly say yes. I am now able to put my foot down on the floor, as

prior to it being implanted...I wouldn't even dare try due to the agonizing

burn that would shoot up my leg.

I was told by two of the most reputable neurosurgeons in the country...one

in Jefferson University Hospital and the other in Hopkins that

they truly beleive that my RSD is so advanced that they don't think anything

at

this point would help my ankle, and they among many others strongly suggest a

below the knee amputation. (This is very unusual for RSD patients...but

since the ankle is just so severe...not much else can be done...I don't want

to

scare any other RSD patient reading this....there is alot of help out there

for RSD patients...you must catch it early enough to do it....)

I also wanted to talk to you about a pain pump, . I know you are not

asking about one, but the more information you get...the better, right?

I also had a pain pump placed in. Many, Many people that I know who have

them SWEAR by them saying they can't imagine not having it in...the pain is so

much better! Here again, , I will be brutally honest with you. I

LOVED my pump when it worked. Unfortunatly though, there were times that it

didn't work...for serious reasons and I wound up in withdrawl from strong

narcs.

The first time was when the pump ran dry and put me into a serious

withdrawl from strong narcs. I never missed an appointment. I was extremely

anal

with the pump, as I had morphine, bubivicaine and baclofen for severe spasms.

When we figured out that the pump had run dry...I was told by the company

medtronic, that this is a fluke and never, ever happens. So..okay, I had the

pump re-filled. Several months went by...it worked great. Unfortunately,

though, after returning for another refill, I was told that the prvious refill

never dispenced any of the meds. I had thought that I had the stomach flu a

few days after I had the pump refilled, but once again it was withdrawal.

I had to have it removed due to the second malfunction. Now, please

remember what I said...some folks swear by their pump and would NEVER, EVER

give

their pumps away.

As far as the procedure in placing the stims, . The first one was a

breeze. I think the first one was so much easier for me since I was so much

thinner back then. Presently, I am taking a med whose major side effect is

" rapid weight gain " ...well..they were not kidding...I have gained over 200

pounds in the past 2 years...of course it couldn't be rapid weight loss..oh

no!

LOL I think that the second stim placement was a wee bit more painful like

i said due to the extra weight. The recuperation period is about 6-8 weeks.

The most IMPORTANT AND VITAL THING TO REMEMBER IS not to twist, bend or

lift anything heavier than 10 pounds. If you follow these basic rules, you

should be fine. As far as pain goes, I had to take percocet for only two days

for the surgical pain.

I hope I have answered all your questions and then some, . I am

positive that even if I missed one, I am sure that you will be receiving a ton

of

replies from alot of others folks in our group....like I told you...our

group is full of great and caring folks.

If I can be of any further help, or you need a shoulder or an ear...please

don't hesitate to contact me...._....KGavi@..._

(mailto:me........KGavi@...) or eyes for _Lenny@..._

(mailto:Lenny@...)

or (215)783-9066...this is my cell.

Once again, Welcome to our group.

Take care.

Kathy G

Group Co-Owner

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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[Guest guest]

Hello Dede:

I am so sorry that you have been through so much with your stimulator. You

are so right when you told to be sure that your surgeon has done this

surgery before...you surely do not want to be his/her first, second or third

patient, but rather her/his 1,000th (if possible)

How are you feeling now?

I know of those headaches...they are torture. I had over 190 blocks...and I

have had a spinal headache with about 1/4 of them. I , thankfully, did not

have any headaches with either of my stims. I have the two in for RSD. I

have had RSD now for 26 years. I had my first one placed about 15 years ago,

and my second one about 7 years ago. My first one was like a miracle. I awoke

with no pain in my arm...when I had pain for over one year. The second

one...not as great...but did give some relief where I can place my foot on the

ground without agonizing pain.

I wish you all the luck and hope you are feeling better!!!

hang in. If you ever would like to chat...or need a set of ears to

listen...please know that I am here for you....as is the rest of our wonderful

group

of fantastic and kind folks.

I will keep you in my thoughts and prayers,

Kathy G.

Group Co-Owner

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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cemailfooterNO62)

[Guest guest]

Hey Dede..

I am so very sorry about Waddles. That is just horrible to lose a close

beloved friend, but especially when you need one the most.

I am so glad that you have joined...and please know that you are a part of

us now....and you have many, many new friends who WILL be there for you.

That is a shame about your pm doc. If you would like, you can email me

privately, and I can do a search for a PM doc. I have done a few for some of

the

other members, and have actually found one or two for them. Prior to me

going out on disability, I worked in the medical field. I keep in touch with

many of the girls that I worked with and they can look into for me.

I am sorry that you are in such a depression. I really can't say that I am

surprised with all the hell you have been through...it is no wonder, my

friend.

I am in the same situation with the idea of amputation. My left leg is not

salveagable. The bones, ligaments, cartiliage and tendons...in other words

the whole damned thing has turned inward and is permanently stuck like this.

If the amputation would not cause it to spread more, I would do it today ,

but there is no guarentee of that...so...I am just stuck.

REgarding the depression, have you talked to anyone? Maybe just a few

sessions might help you. God knows we all need it at one time or another in

our

lives. I have seen a number of psychiatrists in my day...some have helped a

great deal...with body imaging....it calms you down and you can see yourself

no longer in pain. It is amazing. It doesn't always work...and when it does,

it isn't for a real long time, but you can build up the time to be longer

each time.

It also will help with the loss of your Waddles. Some may sound that sounds

silly....it was just a dog...but those are the folks who have never felt the

love and companionship that your " best friend " can bring.

I wish you well. Hang in!

Love,

Kathy G.

Group Co-Owner

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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[Guest guest]

Hi Kathy, Thanks for asking about me. I still am having headaches but I do

believe it's not from the spinal leak, even though some days they feel just as

bad. My surgeon did say on my last post-op visit that if the headaches didn't

get better that they could do a test to be sure that the leak is still

patched. It could be caused from some other source. It's just a long journey I

guess. I still have the RSD pain in my left extremity and for a while after the

surgery I had tremendous burning and sensitivity in my feet and legs. It seems

when I think my lower extremities getting better, the pain comes back. I don't

have a decent PM doctor. Mine left the practice over two years ago, leaving 1 PM

doctor. I've seen the NP ever since and she doesn't seem to care much. Just

gives me my prescriptions and return date. I'm looking for another PM to go to

but it's hard to get in. I went to a PM about a year ago and his solution was to

amputate my arm. I told

him, " no way " and since I have it way down into my back, I don't think it would

have done me any good. I didn't go back to him. Right now too, I'm dealing with

severe depression. My dog Waddles died recently and he was such a good companion

to me. I just miss him so very much that I feel very sad and depressed. Anyway,

thanks for being there and I'm glad I found this group. I wish I'd found it

sooner.

From: KGAVI@... <KGAVI@...>

Subject: Re: Hi I'm new

Stimulator

Date: Tuesday, January 20, 2009, 3:02 PM

Hello Dede:

I am so sorry that you have been through so much with your stimulator. You

are so right when you told to be sure that your surgeon has done this

surgery before...you surely do not want to be his/her first, second or third

patient, but rather her/his 1,000th (if possible)

How are you feeling now?

I know of those headaches... they are torture. I had over 190 blocks...and I

have had a spinal headache with about 1/4 of them. I , thankfully, did not

have any headaches with either of my stims. I have the two in for RSD. I

have had RSD now for 26 years. I had my first one placed about 15 years ago,

and my second one about 7 years ago. My first one was like a miracle. I awoke

with no pain in my arm...when I had pain for over one year. The second

one...not as great...but did give some relief where I can place my foot on the

ground without agonizing pain.

I wish you all the luck and hope you are feeling better!!!

hang in. If you ever would like to chat...or need a set of ears to

listen...please know that I am here for you....as is the rest of our wonderful

group

of fantastic and kind folks.

I will keep you in my thoughts and prayers,

Kathy G.

Group Co-Owner

************ **A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola. com/promoclk/ 100000075x121585 5013x1201028747/ aol?redir=

http://www. freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID=

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[Guest guest]

I would suggest you go see Dr. Henry Feder in Hartford and Hartford

Children's/CT Medical Center.  He knows more about than those at Yale.  We

live in Stamford, CT and drive up to see Dr. Feder.  No reason you can't do both

places, but you might just get in to Feder earlier.  His office number is (860)

545 9490.  Good luck!

 Regards,

Nick Handrinos

[Guest guest]

I would suggest you go see Dr. Henry Feder in Hartford and Hartford

Children's/CT Medical Center.  He knows more about than those at Yale.  We

live in Stamford, CT and drive up to see Dr. Feder.  No reason you can't do both

places, but you might just get in to Feder earlier.  His office number is (860)

545 9490.  Good luck!

 Regards,

Nick Handrinos

[Guest guest]

Nick

Thanks this may be helpful. I have an appointment with Yale NH tomorrow Dr.

Eugene Shapiro recommended by my pediatrician, I will be anxious to see what he

says. If I'm not satisfied I will call Dr. Feder

Beth Ann

[Guest guest]

Nick

Just got back from Yale we were able to get in today. Dr. Shapiro was

of no help whatsoever. He said it is just a virus & she gets it from

all the other kids in daycare and her symptoms do not point to

!!! She will grow out of it. I said she is the only one every 28

days with a fever it CAN'T be a virus. I couldn't believe it. He

also told me to send her to daycare with a fever and see if they call

me. How is this guy a specialist at Yale. I think its time for this

old fart to retire. What a waste of my day from work. I am

definitely going to call Dr Feder and hopefully my pediatrician will

send her files to him.

Has anyone else had this happen?

Beth Ann