Re: My name is Amy , a new member @ stimulator

[Guest guest]

Oh Amy!!!! I feel sooooo bad for you. I'm sorry that the leads

slipped. Sounds awful. I do not have my perm. in yet, but I do have

some medication suggestion. If the dr. will let you try Actiq they

really help. They are like a lollipop. You kind of put them between

your check and gum and lightly suck on them and twirl it sometimes.

It takes about 15 min. to use the whole one, which I usually don't

need the whole one, but the pain relief it so fast. The med is

fentynl, but soooo different from the Duragestic patch because you

get it right into the blood thru your mouth. It can be expensive,

insurance doesn't usually cover the whole thing, if at all, but it is

worth it to have them.

Good luck with everything and please keep us posted. I'll say my

prayers for ya

>

> Hi everyone!

> It was so wonderful when I found ya'll, and finally could talk to

> someone that understood our pain. This has been such a horrible

> experience for me(and all of you I'm sure). I have had alot of

other

> surgeries and problems in my years, but the pain of RSD just cannot

> be described. It is unbelievable and so crippling it just takes my

> breath away.

> I went thru the trail for the stimulator and it seemed to help

alot,

> although they could not really pin point the exact places. They

said

> it would br better after the perm implant. Last Friday, the 14th I

> had the perm implant surgery. I was in a lot of pain, but the stim

> seemed to be doing great,Then on Sunday morning,justa day and a

half

> later, I turned on the remote, pressed the plus button, and it shot

> all the way to full strenth. My leg was jerking off the bed and I

> felt like I got electricuted. My husband tried it, because I thught

> maybe I was doing something wrong, and the same thing happened. We

> called the tech(even though it was Easter), she said she had not

> ever seen that and needed to see me in person. Monday morning I got

> up to get dressed for the appointment and fell getting out of bed.

> My bad leg would not hold me and just buckled. Well, At the

doctor's

> they said the leads had started to slip on Sunday, that was why it

> wasn't working properly, and the fall finished it off and yanked

all

> the wires down by the insition. On the xray it looked like a big

> spider web around the base of my spine.No good!!. They have to redo

> the surgery, re-wire it all, open both insitions and so forth. That

> is scheduled for this Tuesday. I can barely lay back on a pillow, I

> have a huge lump where all the wires are, and of course, my leg and

> foot are on fire all over again.

> Has this happened to any of you? Has anyone else's leads slipped?

> They said they will try one more attempt and if they slip again,

> they will have to get a surgeon to assist, chip off some of the

bone

> on my spine and screw in paddle leads. The doctor said " I don't

want

> to put you thru that if I don't have to " . You know it is bad when

> they say that !!!!

>

> Please.... If any has had this happen, let me know. Or if anyone

has

> had to have the paddle leads screwed in , please get in touvh with

> me. I am very frightened and in such incredible pain. They have me

> taking morphine sulfate, lortab 10mg and soma350. I feel like a

> zombie, And still, I'm in pain and frightened.

>

> Please Help!

> Amy

>

[Guest guest]

Amy --

Welcome to the group! It is an awesome place for information and support.

So sorry to hear about your recent fall and problems with your leads. I wish

you all the best in your next surgery. Just take it easy and try (I know it's

not easy) not to worry.

Best wishes. God Bless

(Mass.)

Make It a Great Day!

My name is Amy , a new member @ stimulator

Hi everyone!

It was so wonderful when I found ya'll, and finally could talk to

someone that understood our pain. This has been such a horrible

experience for me(and all of you I'm sure). I have had alot of other

surgeries and problems in my years, but the pain of RSD just cannot

be described. It is unbelievable and so crippling it just takes my

breath away.

I went thru the trail for the stimulator and it seemed to help alot,

although they could not really pin point the exact places. They said

it would br better after the perm implant. Last Friday, the 14th I

had the perm implant surgery. I was in a lot of pain, but the stim

seemed to be doing great,Then on Sunday morning,justa day and a half

later, I turned on the remote, pressed the plus button, and it shot

all the way to full strenth. My leg was jerking off the bed and I

felt like I got electricuted. My husband tried it, because I thught

maybe I was doing something wrong, and the same thing happened. We

called the tech(even though it was Easter), she said she had not

ever seen that and needed to see me in person. Monday morning I got

up to get dressed for the appointment and fell getting out of bed.

My bad leg would not hold me and just buckled. Well, At the doctor's

they said the leads had started to slip on Sunday, that was why it

wasn't working properly, and the fall finished it off and yanked all

the wires down by the insition. On the xray it looked like a big

spider web around the base of my spine.No good!!. They have to redo

the surgery, re-wire it all, open both insitions and so forth. That

is scheduled for this Tuesday. I can barely lay back on a pillow, I

have a huge lump where all the wires are, and of course, my leg and

foot are on fire all over again.

Has this happened to any of you? Has anyone else's leads slipped?

They said they will try one more attempt and if they slip again,

they will have to get a surgeon to assist, chip off some of the bone

on my spine and screw in paddle leads. The doctor said " I don't want

to put you thru that if I don't have to " . You know it is bad when

they say that !!!!

Please.... If any has had this happen, let me know. Or if anyone has

had to have the paddle leads screwed in , please get in touvh with

me. I am very frightened and in such incredible pain. They have me

taking morphine sulfate, lortab 10mg and soma350. I feel like a

zombie, And still, I'm in pain and frightened.

Please Help!

Amy

[Guest guest]

Hi Amy,

I all so have RSD. I have had my spinal cord stimulator for about 6 yrs now.

What a wonderful machine. It gave me life back.

Mine has slip.

I am looking at putting in the paddle leads. I am not looking forward to this.

I am very scared. I wrote to this group but i never gotten a respond from this

group.

With it slip down i haven't gotten the relief from the stimulator.

I go back to the Dr. May 3 i want to ask more questions on what it going to

happen with this surgery. I need the stimulator. But this one scares me.

Sorry i don't know any more about it. I may soon.

If you go through it please let me know how it went for you.

Have a good day.

amysbackagain <awren@...> wrote:

Hi everyone!

It was so wonderful when I found ya'll, and finally could talk to

someone that understood our pain. This has been such a horrible

experience for me(and all of you I'm sure). I have had alot of other

surgeries and problems in my years, but the pain of RSD just cannot

be described. It is unbelievable and so crippling it just takes my

breath away.

I went thru the trail for the stimulator and it seemed to help alot,

although they could not really pin point the exact places. They said

it would br better after the perm implant. Last Friday, the 14th I

had the perm implant surgery. I was in a lot of pain, but the stim

seemed to be doing great,Then on Sunday morning,justa day and a half

later, I turned on the remote, pressed the plus button, and it shot

all the way to full strenth. My leg was jerking off the bed and I

felt like I got electricuted. My husband tried it, because I thught

maybe I was doing something wrong, and the same thing happened. We

called the tech(even though it was Easter), she said she had not

ever seen that and needed to see me in person. Monday morning I got

up to get dressed for the appointment and fell getting out of bed.

My bad leg would not hold me and just buckled. Well, At the doctor's

they said the leads had started to slip on Sunday, that was why it

wasn't working properly, and the fall finished it off and yanked all

the wires down by the insition. On the xray it looked like a big

spider web around the base of my spine.No good!!. They have to redo

the surgery, re-wire it all, open both insitions and so forth. That

is scheduled for this Tuesday. I can barely lay back on a pillow, I

have a huge lump where all the wires are, and of course, my leg and

foot are on fire all over again.

Has this happened to any of you? Has anyone else's leads slipped?

They said they will try one more attempt and if they slip again,

they will have to get a surgeon to assist, chip off some of the bone

on my spine and screw in paddle leads. The doctor said " I don't want

to put you thru that if I don't have to " . You know it is bad when

they say that !!!!

Please.... If any has had this happen, let me know. Or if anyone has

had to have the paddle leads screwed in , please get in touvh with

me. I am very frightened and in such incredible pain. They have me

taking morphine sulfate, lortab 10mg and soma350. I feel like a

zombie, And still, I'm in pain and frightened.

Please Help!

Amy

[Guest guest]

Thank you for your good wishes. It is a little before nine in the morning,

surgery is at one. I just really hope this one works. I have been in bed

most of the last year and five months and I absolutely have got to get out

of here! I would say I have been up on my feet, collectively over that time

period, maybe 2 months. You see I had surgery on my foot on

November 9, 2004,I guess I should say I had Botched surgery at that time.

The Doctor cut and severed all the nerves from my foot to my spinal cord. My

foot curled into a ball, toes curled under, foot curled in. I have had 3

surgeries (with a different Dr. of course) trying to repair the foot in

hopes of wearing a shoe again. That has been I guess a success. I had to

have all the bones and joints removed from my foot and metal to replace it.

My toes don't move at all, and I have no feeling, But I can wear a shoe and

walk with a limp, thank God. This however, has caused the disease RSD, which

I had never heard of. I've had allot of other procedures, but none have

worked, The stimulator however does reduce the pain. I really need to get my

life back. Luckily I have the greatest husband in the world, but he is tired

too.

Thanks again for writing back to me, it really meant allot. I've got to get

ready to leave, talk to you all soon.

Amy

[Guest guest]

Note: forwarded message attached.

---------------------------------

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

-Amy by the time you see this you will have had your surgery. Hope

all went well girl I hope you scs is working well and the

surgical pain is not too bad.

Mine isn't until the end of June and I hate to have to wait that long

but it has given me time to ask all kinds of questions and get

answers from you guys. Hopefully when I get mine I will get as good

relief from my perm as I did from the trial one.

Well again hope you are feeling much better soon and you're up and

walking without a lot of pain. Take care of yourself and give hubby

an extra hug for being so wonderful. So many of us lose ours after

being sick for so long. It's great he's there for you. Tell him to

take care of himself too, it's important for him also.

Ruth

-- In Stimulator , " Amy Wren " <awren@...> wrote:

>

> Thank you for your good wishes. It is a little before nine in the

morning,

> surgery is at one. I just really hope this one works. I have been

in bed

> most of the last year and five months and I absolutely have got to

get out

> of here! I would say I have been up on my feet, collectively over

that time

> period, maybe 2 months. You see I had surgery on my foot on

> November 9, 2004,I guess I should say I had Botched surgery at

that time.

> The Doctor cut and severed all the nerves from my foot to my spinal

cord. My

> foot curled into a ball, toes curled under, foot curled in. I have

had 3

> surgeries (with a different Dr. of course) trying to repair the

foot in

> hopes of wearing a shoe again. That has been I guess a success. I

had to

> have all the bones and joints removed from my foot and metal to

replace it.

> My toes don't move at all, and I have no feeling, But I can wear a

shoe and

> walk with a limp, thank God. This however, has caused the disease

RSD, which

> I had never heard of. I've had allot of other procedures, but none

have

> worked, The stimulator however does reduce the pain. I really need

to get my

> life back. Luckily I have the greatest husband in the world, but he

is tired

> too.

>

> Thanks again for writing back to me, it really meant allot. I've

got to get

> ready to leave, talk to you all soon.

>

> Amy

>

[Guest guest]

Amy,

I hope your surgery went well. I can't imagine being in bed for as long as you

have. Let alone the debilitating issue with your foot. That is awful. If your

nerves are severed in your foot how is the SCS going to help you?

Keep your chin up. Smile and know that things can and will get better. You

have a lot of support from this group! Get Well soon and enjoy the warmer

weather with shoes on!!!!

Make It a Great Day!

RE: My name is Amy , a new member @ stimulator

Thank you for your good wishes. It is a little before nine in the morning,

surgery is at one. I just really hope this one works. I have been in bed

most of the last year and five months and I absolutely have got to get out

of here! I would say I have been up on my feet, collectively over that time

period, maybe 2 months. You see I had surgery on my foot on

November 9, 2004,I guess I should say I had Botched surgery at that time.

The Doctor cut and severed all the nerves from my foot to my spinal cord. My

foot curled into a ball, toes curled under, foot curled in. I have had 3

surgeries (with a different Dr. of course) trying to repair the foot in

hopes of wearing a shoe again. That has been I guess a success. I had to

have all the bones and joints removed from my foot and metal to replace it.

My toes don't move at all, and I have no feeling, But I can wear a shoe and

walk with a limp, thank God. This however, has caused the disease RSD, which

I had never heard of. I've had allot of other procedures, but none have

worked, The stimulator however does reduce the pain. I really need to get my

life back. Luckily I have the greatest husband in the world, but he is tired

too.

Thanks again for writing back to me, it really meant allot. I've got to get

ready to leave, talk to you all soon.

Amy

[Guest guest]

Hi Ruth, and everyone !

Well, surgery went ok I guess. they said they had a few problems, my blood

pressure had bottomed out 2 times, and I went into the O>R> with the I>V>

in my right hand and a blue hospital gown on. Came out with the I.V. in my

left arm and a green gown on. I guess I'll get the details at the post op

appointment. This time I was in allot more pain afterwards, since they were

cutting into tissue that had only healed for 10 days. They had to re-open

both incisions because they used all new wiring and leads. And where they

tunnel thru tissue to connect the two is really black and blue already. But

to me, it is worth it. My stim. really works for me. Keep praying for me

please, that these don't slip also. I really afraid to move in fear I'll do

something. If they do, the doc will have to use the paddle leads. He said he

really doesn't want to put me thru that, and you know, if they say that,

it's got to be hard.

Thanks so much for the suggestions for prescriptions I have not tried yet.

Right now I take 27 Medications per day!

Unbelievable isn't it. We have tried very many others, but I had allot of

very bad reactions to them. When I tried Neurontin, after two weeks, I

didn't know my own name, couldn't figure out HOW to get in my car, and I had

my keys in my hand. It was scary. Of course my husband and I decided I would

not drive until I got my faculties back. Then they tried Methadone. That

name alone scarred my husband and I, Being from the sixties, methadone was

used for only one thing. Heroine addicts. I reacted to the word the minute

the doctor said it, and he said " calm down " it was originally used for

severe pain and still is. So we tried it. The first two days I broke out in

a rash, called the doctor, they said it should go away. Day 5, my hands and

feet started to swell , it happened very quickly, and in about two hours

later, my face was also swollen and I started to choke. Thankfully my

husband was home, in minutes I was on the floor choking for air. The

paramedics came but could not get the airway in because my trachea was

swollen shut, so they rushed me to the ER. That was a close one. The next

thing the doctors tried were spinal cord sympathetic nerve blocks, a series

of seven. They put long needles certain places in your spine filled with

fentnyl and morphine, once a week. So every Tuesday I went under local, and

had this procedure. It only worked for a few hours the first couple of

times, but they said that was normal It never really worked on my pain,

however it did(I can't believe I am telling EVERYONE this)work on my bowel

muscles. I had absolutely no feeling what so ever there. So, during our last

holiday season, I had to wear adult diapers for about 6 weeks. I didn't have

a very happy new year. And what ever humility or self-esteem I had left was

gone. It was the most degrading feeling I can remember. After that, we

changed to a different Pain Medicine Specialist. Thank goodness I finally

have really great doctors now. I tried the stim. because I wanted some sort

of life back, and to be able to stop taking allot of these meds. We have

found out, by trial and elimination, that sometimes it takes a combination

of the same type of med to work. Some of the things I am taking for example

are, Wellbutrin, Elavil, Zoloft, Lyrica, Soma, Zanaflex, Lortab, Morphine

sulfate,Ativan, and Ambien. Some are the same type as another, but it took

both to have any effect. I feel like a Zombie Half the time, and I wanted a

LIFE!! For me, the stimulator cuts my pain by about 30-40% at times,

sometime only 20%. But I'll take anything. My pain and depression had gotten

out of control, in my opinion. My husband said I wasn't that bad, but that

is just cause he loves me. And I didn't want to lose that either. I am so

lucky to have such an incredible loving and supportive husband. And we have

a wonderful marriage. But the last year and a half has been really hard, for

both of us. Then you add in the fact that this is all because of the

negligence of so idiot Dr.that butchered me, there is the added amount of

intense anger for both of us. I am trying to learn how to deal with that!

Anyway, if you ask me, I would try the stimulator. At least the trial to see

if it helps you at all. I did it for 7 days, it wasn't out for 5 minutes

when I could have begged for it back. Any relief is better than no relief at

all! Mine is on right now, thank goodness. I think I might be starting to

get used to it, if only it could help with some of the surgical pain. Just

leaning back on a pillow makes me gasp in pain. Buy day by day, that should

get better.

Well, I have to lay back down for a while, starting to feel worse, and

getting a little sick to my stomach.

Talk to you all soon. Thanks

again for your e-mails. They make me feel so great, someone to talk to. I

feel so isolated having been in bed for this long. You guys are great!

Amy

[Guest guest]

Get better Amy!

It sounds you have been put through hell over the years. WOW, 27 medications,

that is a lot. I can see why you would want to reduce them.

Hopefully you will continue to get relief from the stimulator. I had my put in

in February and it gives me about 25% relief when it is on. When it's off, I am

back to what I was. I have tried to reduce my Neurontin, but I then get burning

in my hip, so I take it the way I have been for 4 years.

Get your rest, take one day at a time!

Make It a Great Day!

RE: Re: My name is Amy , a new member @ stimulator

Hi Ruth, and everyone !

Well, surgery went ok I guess. they said they had a few problems, my blood

pressure had bottomed out 2 times, and I went into the O>R> with the I>V>

in my right hand and a blue hospital gown on. Came out with the I.V. in my

left arm and a green gown on. I guess I'll get the details at the post op

appointment. This time I was in allot more pain afterwards, since they were

cutting into tissue that had only healed for 10 days. They had to re-open

both incisions because they used all new wiring and leads. And where they

tunnel thru tissue to connect the two is really black and blue already. But

to me, it is worth it. My stim. really works for me. Keep praying for me

please, that these don't slip also. I really afraid to move in fear I'll do

something. If they do, the doc will have to use the paddle leads. He said he

really doesn't want to put me thru that, and you know, if they say that,

it's got to be hard.

Thanks so much for the suggestions for prescriptions I have not tried yet.

Right now I take 27 Medications per day!

Unbelievable isn't it. We have tried very many others, but I had allot of

very bad reactions to them. When I tried Neurontin, after two weeks, I

didn't know my own name, couldn't figure out HOW to get in my car, and I had

my keys in my hand. It was scary. Of course my husband and I decided I would

not drive until I got my faculties back. Then they tried Methadone. That

name alone scarred my husband and I, Being from the sixties, methadone was

used for only one thing. Heroine addicts. I reacted to the word the minute

the doctor said it, and he said " calm down " it was originally used for

severe pain and still is. So we tried it. The first two days I broke out in

a rash, called the doctor, they said it should go away. Day 5, my hands and

feet started to swell , it happened very quickly, and in about two hours

later, my face was also swollen and I started to choke. Thankfully my

husband was home, in minutes I was on the floor choking for air. The

paramedics came but could not get the airway in because my trachea was

swollen shut, so they rushed me to the ER. That was a close one. The next

thing the doctors tried were spinal cord sympathetic nerve blocks, a series

of seven. They put long needles certain places in your spine filled with

fentnyl and morphine, once a week. So every Tuesday I went under local, and

had this procedure. It only worked for a few hours the first couple of

times, but they said that was normal It never really worked on my pain,

however it did(I can't believe I am telling EVERYONE this)work on my bowel

muscles. I had absolutely no feeling what so ever there. So, during our last

holiday season, I had to wear adult diapers for about 6 weeks. I didn't have

a very happy new year. And what ever humility or self-esteem I had left was

gone. It was the most degrading feeling I can remember. After that, we

changed to a different Pain Medicine Specialist. Thank goodness I finally

have really great doctors now. I tried the stim. because I wanted some sort

of life back, and to be able to stop taking allot of these meds. We have

found out, by trial and elimination, that sometimes it takes a combination

of the same type of med to work. Some of the things I am taking for example

are, Wellbutrin, Elavil, Zoloft, Lyrica, Soma, Zanaflex, Lortab, Morphine

sulfate,Ativan, and Ambien. Some are the same type as another, but it took

both to have any effect. I feel like a Zombie Half the time, and I wanted a

LIFE!! For me, the stimulator cuts my pain by about 30-40% at times,

sometime only 20%. But I'll take anything. My pain and depression had gotten

out of control, in my opinion. My husband said I wasn't that bad, but that

is just cause he loves me. And I didn't want to lose that either. I am so

lucky to have such an incredible loving and supportive husband. And we have

a wonderful marriage. But the last year and a half has been really hard, for

both of us. Then you add in the fact that this is all because of the

negligence of so idiot Dr.that butchered me, there is the added amount of

intense anger for both of us. I am trying to learn how to deal with that!

Anyway, if you ask me, I would try the stimulator. At least the trial to see

if it helps you at all. I did it for 7 days, it wasn't out for 5 minutes

when I could have begged for it back. Any relief is better than no relief at

all! Mine is on right now, thank goodness. I think I might be starting to

get used to it, if only it could help with some of the surgical pain. Just

leaning back on a pillow makes me gasp in pain. Buy day by day, that should

get better.

Well, I have to lay back down for a while, starting to feel worse, and

getting a little sick to my stomach.

Talk to you all soon. Thanks

again for your e-mails. They make me feel so great, someone to talk to. I

feel so isolated having been in bed for this long. You guys are great!

Amy