Hello I am New

July 11, 2009

Hi Mike

I am for all of us who suffer with chronic pain to have any and all

resources available.

No one ever suggested that I tried cannabis, if so and it worked for me then

wonderful. I am glad that what you are doing works for you. I am sorry I

really do

not know anything about the system here in California. I do know there is a

place just a couple of blocks from me that makes cannibis available to those

with a Rx.

Sorry I can't be of help as far as information.

carol in sf

-- Re: Hello I am new

>hi, i'm a relative newbie here also, i have a SCS and a morphine pump. i

have taken myself off of all oral opiates, as they almost killed me. i know

they work for some folks, but i'm just not one of them. through the pump, i

get what my body can tolerate, and on the recommendation of a hospice nurse

i smoke cannabis. honestly, its the only reason i alive and kicking today

writing letters. since i have recovered, i have been advocating

legalization of medicinal cannabis. every time i see someone is from cali,

i have to ask them questions, on how things work. we would like to put

together a system that works for everyone, not just a selected few that are

profiteering off of patients. anything that can help, just hooler--thanks,

mike from illinois

> Hello and thank you for accepting me in your group. My name is carol. I

live

> in San Francisco in a high rise for the elderly and disabled in HUD

housing

> I

> am 66 years young..lol I live with my Romeo, he is a Maltese dog 10 years

> old. I thought I would have to give him up when I got to where I couldn't

> walk

> but I am so lucky I was given in home support.

>

> I had a hip replacement the first of this year. While in the hospital the

> doctor

> in charge of my pain meds came every evening to check in with me. One

> evening

> he told me that he could help me with my pain I have associated with my

> neuropathy.

> He told me that he felt I would be a good candidate for a spinal column

> stimulator.

> I had never heard of such a thing but I felt he was throwing me a life

line.

> Telling

> me I could " test drive " it first, I feel like I have nothing to lose.

>

> I had a perfect surgery with the hip replacement. Had no pain at all when

I

> got home.

> A month later I fell due to my feet being in bad shape that day and I

> dislocated my

> hip replacement. Ended up back in the hospital.

>

> A month ago I finally went to Dr. Hattori's for a consultation. I now am

> required to

> see a pain psychologist and if she gives the go ahead then this will

happen.

> Dr. Hattori said that all we need is her okay for medicare approval.

>

> I was diagnosed with Idopathic Distal Symmetric Axonal Polyneuropathy

about

> five

> years ago. At that time the Neurologists best guess for the cause is the

> Pravachol

> I took for years as a cholesterol blocker. Best guess but cannot be an

> absolute.

> Even though my Neuropathy is severe, I do still have my good days when I

can

> walk.

> I celebrate my good days. I don't take them for granted, that is for sure

>

> I wanted to come to this group to learn about this spinal column

stimulator

> from those of you who have been there and done that. As I go through this

> if it happens I am

> sure I will need your support and I want to be able to reach out and give

my

> support

> to others. Reaching out and getting out of the me is a good way to put

the

> pain on

> ignore. I am co owner in a very active chronic pain group but I promise I

> will also

> give my time and attention right here.

>

> I know I wrote a lot here..just wanted to let you know who I am and why I

am

> here.

>

July 11, 2009

Thanks Sue. Stress is also bad for our pain. Today I am especially stressed.

I have

only had one care giver since I got really bad. She is going to leave due to

my being

a smoker. This never bothered her before but a relative of hers has lung

cancer and now she is afraid of second hand smoke. I called myself trying to

quit but have not

been able to. I guess I am not strong enough. I stress out and get more

pain. My doctor told me I should not at this time even think about quitting

...I don't need the stress. I am heartbroken because she became my best

friend also. Before she came into my life I was really a loner. Don't get

me wrong I don't blame her for wanting to

quit working for me. I am just so sad.

carol sf

-- Hello I am new

Hello and thank you for accepting me in your group. My name is carol. I live

in San Francisco in a high rise for the elderly and disabled in HUD housing

I

am 66 years young..lol I live with my Romeo, he is a Maltese dog 10 years

old. I thought I would have to give him up when I got to where I couldn't

walk

but I am so lucky I was given in home support.

I had a hip replacement the first of this year. While in the hospital the

doctor

in charge of my pain meds came every evening to check in with me. One

evening

he told me that he could help me with my pain I have associated with my

neuropathy.

He told me that he felt I would be a good candidate for a spinal column

stimulator.

I had never heard of such a thing but I felt he was throwing me a life line.

Telling

me I could " test drive " it first, I feel like I have nothing to lose.

I had a perfect surgery with the hip replacement. Had no pain at all when I

got home.

A month later I fell due to my feet being in bad shape that day and I

dislocated my

hip replacement. Ended up back in the hospital.

A month ago I finally went to Dr. Hattori's for a consultation. I now am

required to

see a pain psychologist and if she gives the go ahead then this will happen.

Dr. Hattori said that all we need is her okay for medicare approval.

I was diagnosed with Idopathic Distal Symmetric Axonal Polyneuropathy about

five

years ago. At that time the Neurologists best guess for the cause is the

Pravachol

I took for years as a cholesterol blocker. Best guess but cannot be an

absolute.

Even though my Neuropathy is severe, I do still have my good days when I can

walk.

I celebrate my good days. I don't take them for granted, that is for sure.

I wanted to come to this group to learn about this spinal column stimulator

from those of you who have been there and done that.. As I go through this,

if it happens I am

sure I will need your support and I want to be able to reach out and give my

support

to others. Reaching out and getting out of the me is a good way to put the

pain on

ignore. I am co owner in a very active chronic pain group but I promise I

will also

give my time and attention right here.

I know I wrote a lot here..just wanted to let you know who I am and why I am

here.

July 11, 2009

I agree stress definitely increases the pain. Of course you are sad. Your best

friend and caregiver is leaving. Your world is being turned upside down again.

You are strong. Anyone who lives with chronic pain is strong in my book!

Hopefully you will find a new caregiver soon that you will bond with.

Sue C

________________________________

From: momC <onemomc1@...>

Stimulator

Sent: Saturday, July 11, 2009 2:15:02 PM

Subject: Re: Hello I am new

Thanks Sue. Stress is also bad for our pain. Today I am especially stressed.

I have

only had one care giver since I got really bad. She is going to leave due to

my being

a smoker. This never bothered her before but a relative of hers has lung

cancer and now she is afraid of second hand smoke. I called myself trying to

quit but have not

been able to. I guess I am not strong enough. I stress out and get more

pain. My doctor told me I should not at this time even think about quitting

...I don't need the stress. I am heartbroken because she became my best

friend also. Before she came into my life I was really a loner. Don't get

me wrong I don't blame her for wanting to

quit working for me. I am just so sad.

carol sf

-- Hello I am new

Hello and thank you for accepting me in your group. My name is carol. I live

in San Francisco in a high rise for the elderly and disabled in HUD housing

I

am 66 years young..lol I live with my Romeo, he is a Maltese dog 10 years

old. I thought I would have to give him up when I got to where I couldn't

walk

but I am so lucky I was given in home support.

I had a hip replacement the first of this year. While in the hospital the

doctor

in charge of my pain meds came every evening to check in with me. One

evening

he told me that he could help me with my pain I have associated with my

neuropathy.

He told me that he felt I would be a good candidate for a spinal column

stimulator.

I had never heard of such a thing but I felt he was throwing me a life line.

Telling

me I could " test drive " it first, I feel like I have nothing to lose.

I had a perfect surgery with the hip replacement. Had no pain at all when I

got home.

A month later I fell due to my feet being in bad shape that day and I

dislocated my

hip replacement. Ended up back in the hospital.

A month ago I finally went to Dr. Hattori's for a consultation. I now am

required to

see a pain psychologist and if she gives the go ahead then this will happen.

Dr. Hattori said that all we need is her okay for medicare approval.

I was diagnosed with Idopathic Distal Symmetric Axonal Polyneuropathy about

five

years ago. At that time the Neurologists best guess for the cause is the

Pravachol

I took for years as a cholesterol blocker. Best guess but cannot be an

absolute.

Even though my Neuropathy is severe, I do still have my good days when I can

walk.

I celebrate my good days. I don't take them for granted, that is for sure.

I wanted to come to this group to learn about this spinal column stimulator

from those of you who have been there and done that.. As I go through this,

if it happens I am

sure I will need your support and I want to be able to reach out and give my

support

to others. Reaching out and getting out of the me is a good way to put the

pain on

ignore. I am co owner in a very active chronic pain group but I promise I

will also

give my time and attention right here.

I know I wrote a lot here..just wanted to let you know who I am and why I am

here.

July 11, 2009

I understand the fear cancer; my sister had lung cancer and everyone says she

should be dead by 3 years now. I also smoked but my dr threated me saying no

surgery until I quit.

I see her point but she is a caregiver, she should do her job. What if while she

is there do not smoke? Is that possible or can you not go that long without

smoking?

Could she recommend someone else?

Kathy

I can never have too many pairs of shoes!

From: momC <onemomc1@...>

Subject: Re: Hello I am new

Stimulator

Date: Saturday, July 11, 2009, 1:15 PM

Thanks Sue. Stress is also bad for our pain. Today I am especially stressed.

I have

only had one care giver since I got really bad. She is going to leave due to

my being

a smoker. This never bothered her before but a relative of hers has lung

cancer and now she is afraid of second hand smoke. I called myself trying to

quit but have not

been able to. I guess I am not strong enough. I stress out and get more

pain. My doctor told me I should not at this time even think about quitting

...I don't need the stress. I am heartbroken because she became my best

friend also. Before she came into my life I was really a loner. Don't get

me wrong I don't blame her for wanting to

quit working for me. I am just so sad.

carol sf

-- Hello I am new

Hello and thank you for accepting me in your group. My name is carol. I live

in San Francisco in a high rise for the elderly and disabled in HUD housing

I

am 66 years young..lol I live with my Romeo, he is a Maltese dog 10 years

old. I thought I would have to give him up when I got to where I couldn't

walk

but I am so lucky I was given in home support.

I had a hip replacement the first of this year. While in the hospital the

doctor

in charge of my pain meds came every evening to check in with me. One

evening

he told me that he could help me with my pain I have associated with my

neuropathy.

He told me that he felt I would be a good candidate for a spinal column

stimulator.

I had never heard of such a thing but I felt he was throwing me a life line.

Telling

me I could " test drive " it first, I feel like I have nothing to lose.

I had a perfect surgery with the hip replacement. Had no pain at all when I

got home.

A month later I fell due to my feet being in bad shape that day and I

dislocated my

hip replacement. Ended up back in the hospital.

A month ago I finally went to Dr. Hattori's for a consultation. I now am

required to

see a pain psychologist and if she gives the go ahead then this will happen.

Dr. Hattori said that all we need is her okay for medicare approval.

I was diagnosed with Idopathic Distal Symmetric Axonal Polyneuropathy about

five

years ago. At that time the Neurologists best guess for the cause is the

Pravachol

I took for years as a cholesterol blocker. Best guess but cannot be an

absolute.

Even though my Neuropathy is severe, I do still have my good days when I can

walk.

I celebrate my good days. I don't take them for granted, that is for sure.

I wanted to come to this group to learn about this spinal column stimulator

from those of you who have been there and done that.. As I go through this,

if it happens I am

sure I will need your support and I want to be able to reach out and give my

support

to others. Reaching out and getting out of the me is a good way to put the

pain on

ignore. I am co owner in a very active chronic pain group but I promise I

will also

give my time and attention right here.

I know I wrote a lot here..just wanted to let you know who I am and why I am

here.

July 16, 2009

Hi from New Orleans area. I am also new to the pain pump. Didn't have the

stimulator put in....didn't think it would work. Had the PP put in in

January and didn't think I liked it or that it was doing everything, so the

PM doctor turned it down to minimum for me....wrong move!!!!! It was doing

A LOT of good that I didn't realize. I just didn't like that think in my

tummy.

I had an auto accident in 2001 and had some back problems from it and then

had another in 2008. We were RVers and were in upstate NY and had a pretty

good accident with a lot of trees.....emergency room sent me on my way as

fine " but I hurt like crazy. Came back south after a few weeks, and the PM

doctor found a spine fracture. He put cement in it...it leaked. Had to

have neurosurgeon take the cement out in regular surgery. Then had the pain

pump put in by the same NS and it leaked.....had to have the surgery over

again. Was a hell of a year, but it is over and the pump works pretty good,

but I am left bent over like the grinch which ages you about 20+ or more

year. Drives my crazy because my mind is fine, body is pretty much ok, but

can't straighten out. PM said they only work on young kids to help them out

Any.....that's my story and I wish I didn't have to stick with it......

My hubby spent 25 years in San Francisco so it was nice to read that letter

from the lady in SF. I would love to be out there....a lot cooler than NO.

Thanx for listening.....

-- Hello I am new

Hello and thank you for accepting me in your group. My name is carol. I live

in San Francisco in a high rise for the elderly and disabled in HUD housing

I

am 66 years young..lol I live with my Romeo, he is a Maltese dog 10 years

old. I thought I would have to give him up when I got to where I couldn't

walk

but I am so lucky I was given in home support.

I had a hip replacement the first of this year. While in the hospital the

doctor

in charge of my pain meds came every evening to check in with me. One

evening

he told me that he could help me with my pain I have associated with my

neuropathy.

He told me that he felt I would be a good candidate for a spinal column

stimulator.

I had never heard of such a thing but I felt he was throwing me a life line.

Telling

me I could " test drive " it first, I feel like I have nothing to lose.

I had a perfect surgery with the hip replacement. Had no pain at all when I

got home.

A month later I fell due to my feet being in bad shape that day and I

dislocated my

hip replacement. Ended up back in the hospital.

A month ago I finally went to Dr. Hattori's for a consultation. I now am

required to

see a pain psychologist and if she gives the go ahead then this will happen.

Dr. Hattori said that all we need is her okay for medicare approval.

I was diagnosed with Idopathic Distal Symmetric Axonal Polyneuropathy about

five

years ago. At that time the Neurologists best guess for the cause is the

Pravachol

I took for years as a cholesterol blocker. Best guess but cannot be an

absolute.

Even though my Neuropathy is severe, I do still have my good days when I can

walk.

I celebrate my good days. I don't take them for granted, that is for sure.

I wanted to come to this group to learn about this spinal column stimulator

from those of you who have been there and done that. As I go through this,

if it happens I am

sure I will need your support and I want to be able to reach out and give my

support

to others. Reaching out and getting out of the me is a good way to put the

pain on

ignore. I am co owner in a very active chronic pain group but I promise I

will also

give my time and attention right here.

I know I wrote a lot here..just wanted to let you know who I am and why I am

here.

July 16, 2009

Hi Carol, I joined this group also for the same reason you did. I have had the

trail stimulator put in and it did work pretty good. My question to you

is...what chronic pain group are you co-owner for? Is it online? I am

interested in it because I am in chronic pain and I would love to hear other

stories from people in the same situation I am in.

>

> Hi from New Orleans area. I am also new to the pain pump. Didn't have the

> stimulator put in....didn't think it would work. Had the PP put in in

> January and didn't think I liked it or that it was doing everything, so the

> PM doctor turned it down to minimum for me....wrong move!!!!! It was doing

> A LOT of good that I didn't realize. I just didn't like that think in my

> tummy.

>

> I had an auto accident in 2001 and had some back problems from it and then

> had another in 2008. We were RVers and were in upstate NY and had a pretty

> good accident with a lot of trees.....emergency room sent me on my way as

> fine " but I hurt like crazy. Came back south after a few weeks, and the PM

> doctor found a spine fracture. He put cement in it...it leaked. Had to

> have neurosurgeon take the cement out in regular surgery. Then had the pain

> pump put in by the same NS and it leaked.....had to have the surgery over

> again. Was a hell of a year, but it is over and the pump works pretty good,

> but I am left bent over like the grinch which ages you about 20+ or more

> year. Drives my crazy because my mind is fine, body is pretty much ok, but

> can't straighten out. PM said they only work on young kids to help them out

>

> Any.....that's my story and I wish I didn't have to stick with it......

>

> My hubby spent 25 years in San Francisco so it was nice to read that letter

> from the lady in SF. I would love to be out there....a lot cooler than NO.

>

> Thanx for listening.....

>

> -- Hello I am new

>

> Hello and thank you for accepting me in your group. My name is carol. I live

> in San Francisco in a high rise for the elderly and disabled in HUD housing

> I

> am 66 years young..lol I live with my Romeo, he is a Maltese dog 10 years

> old. I thought I would have to give him up when I got to where I couldn't

> walk

> but I am so lucky I was given in home support.

>

> I had a hip replacement the first of this year. While in the hospital the

> doctor

> in charge of my pain meds came every evening to check in with me. One

> evening

> he told me that he could help me with my pain I have associated with my

> neuropathy.

> He told me that he felt I would be a good candidate for a spinal column

> stimulator.

> I had never heard of such a thing but I felt he was throwing me a life line.

> Telling

> me I could " test drive " it first, I feel like I have nothing to lose.

>

> I had a perfect surgery with the hip replacement. Had no pain at all when I

> got home.

> A month later I fell due to my feet being in bad shape that day and I

> dislocated my

> hip replacement. Ended up back in the hospital.

>

> A month ago I finally went to Dr. Hattori's for a consultation. I now am

> required to

> see a pain psychologist and if she gives the go ahead then this will happen.

> Dr. Hattori said that all we need is her okay for medicare approval.

>

> I was diagnosed with Idopathic Distal Symmetric Axonal Polyneuropathy about

> five

> years ago. At that time the Neurologists best guess for the cause is the

> Pravachol

> I took for years as a cholesterol blocker. Best guess but cannot be an

> absolute.

> Even though my Neuropathy is severe, I do still have my good days when I can

> walk.

> I celebrate my good days. I don't take them for granted, that is for sure.

>

> I wanted to come to this group to learn about this spinal column stimulator

> from those of you who have been there and done that. As I go through this,

> if it happens I am

> sure I will need your support and I want to be able to reach out and give my

> support

> to others. Reaching out and getting out of the me is a good way to put the

> pain on

> ignore. I am co owner in a very active chronic pain group but I promise I

> will also

> give my time and attention right here.

>

> I know I wrote a lot here..just wanted to let you know who I am and why I am

> here.

>

July 16, 2009

Sorry to hear that you had such a hard year, but am glad that you are feeling

better. I also have a pain pump, as well as 2 spinal cord stimulators. For me,

the combination of the pain and stims have made a big difference in my life.

Did you ever have a trial for the stimulator? That's the only way to know for

sure if it would help you.

Have you tried or could you do light stretching to help your back? Water

exercises are much easier on the body and might be beneficial. Speak to your dr

about doing light exercise to help loosen up and straighten up your back. Hope

this helps.

Sue C

________________________________

From: marelyn <marelyn2@...>

Stimulator

Sent: Thursday, July 16, 2009 1:26:36 PM