Re: Re: RSD up to hip

[Guest guest]

Hello R. and D.

Thanks so much for getting back to me, girls!! I greatly appreciate it....I

have always grown up with the saying from my mom...if I haven't learned

something new today...then it wasn't a great day...just a good one.

I am so sorry to hear about your plights, girls. It truly sucks. I know

for me...it sure does. I have had RSD now for 26 years. It started in my left

knee cap after getting hit by a line drive in my knee cap. I was a pitcher

for my softball team. The impact was so hard, it hit my knee and flew over

the batting cage from the mound, where I was standing!! My family and I

thought that I was soo lucky since there was no fx, dislocation or

displacement....but then RSD showed it's ugly, cruel and relentless head. Back

then, it was

really almost unheard of...so it took so long to diagnose...but finally it

was. I have it all through out my body now. ...but the left leg is the worst

by far.

...I am so sorry about the accident, hon. Dear God....just when you

are thinking you can handle a horrible situation...then the damned car

accident. Please know that I will certainly keep you in my thoughts and

prayers. I

really hope that they can fix the stim for you and you can get some relief

again withthe help of the stim. Have you ever thought about a pain pump? I

have two stims, and am seriously thinking about another one for my left leg. I

had a pain pump, and when it worked...it was awesome pain relief for

me....especially for the horrific spasms that are associated with RSD.

Unfortunately, I had too many malfunctions, and had to have it removed. I

really miss the

pump. Perhaps you can chat with your PM Dr about it??

....thanks for the info about the phantom pain, sweetie. What exactly

does it feel like? I have heard from some folks that it isn't that

bad...since they do not have it bad, but others cry their eyes out with

pain....

I am so sorry to hear about your lawn mower tragedy...that is horrible. God

bless your sense of determination....it is a great thing!!

Having the RSD up to your hip, girls must be extremely challenging! I now

that I have it in both legs, arms, wrists and back.

I will keep you girls in my thoughts and prayers. Hang in!

I wish for all of us pain free days and sleep filled nights!

GEntle hugs to you and all,

Kathy G.

Group Co-Owner

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

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[Guest guest]

Hey girls!

One more " food for thought " ...I have had many episodes of severe

cellulitis in my right leg....twice with MRSA in the wound....which will be the

leg

that i will need to count on after the amputation...If I do so choose to do it.

Presently, I have yet another episode of cellulitis in the right leg...it

is very painful...and I can't imagine having to count on this leg right

now...it is so painful, and there is so much drainage just oozing everywhere

out of

the wound...any ideas, ....did you have any problems like this ?

Gentle hugs, girls,

Kathy G.

Group Co-Owner

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

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[Guest guest]

hi susan? i have a medtronic that is fully implanted? my battery is under my

fluff (fat) on my lower left side?of my stomach?? my rsd progressed so quickly

and fast that a battery that was suposed to last 5 years was replaced in 15

months?? i started at haveing about 75 % pain relief? now i have about 30 to 50

% i've had my stim about 3? to 4 years??? it don't help with the phantom or

arthritis at all??? those i can deal with?? i'm still on pain meds along with my

stim? but there's still times it gets unbearable? like tonight ?????? i too have

problems with my foot and leg turning purple? but mine turn all the way up to my

knee?? i took a fall because my cane folded up so i know all about shifting the

lead? thankfully when the dr replaced my battery he was able to shift my lead

back with out more surgery???? feel free to email me anytime?? hugs lisa

Re: Re: (no subject)

>

>

>

>

>

>

> Hi, Suzy...

>

> the reason is that my foot and ankle are so severely damaged and

there is so

> much RSD through out that foot and ankle...it is " not salvegable "

as the

> doctors call it. The bones, ligaments and cartilage have all turned

inward.

> they are all permanently inward causing the pain to be even worse.

Of course I

> would never consider this in the other areas where the RSD is

located...even

> where it is moderately severe. The doctors at the cleveland clinic,

johns

> hopkins, mayo clinic and jefferson have all told me and my pm dr

that my foot

> is the worst case they have seen to date. They have taken so many

pictures of

> my foot, and asked me to sign permission slips to teach about RSD,

and to

> 1put if in the New Enland Journal regarding RSD. They have used

these photos

> in medical schools all over.

>

> These doctors have told me that in the past, they did amputations

more

> frequently, but now they only do them for the patients that have no

hope of a

> productive life due to the limb. My RSD is below the knee right

now...it is not

> above the knee...so unless it spreads from the surgery, i would not

have the

> pain any longer from the RSD.

>

> One pain that does ocurr frequently with amputation is phantom

pain. That

> is one of the biggest Draw backs on an amputation.

>

> Thanks for your thoughts and your well wishes.

>

> 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]

i was lucky i really didn't have any problems with infections or anything else?

well i felt like a baby for a lill while lol i ended up with thrush on my tongue

from an antibiotic overload? they really shoved the anti because they were

afraid of infection from all the contaminates from the mower ,grass?, sock and

shoe material that was mixed in with my foot??? i did have some drainage from

around 4 of the 5 k? rods that i had in my foot stabilizing what bones they were

able to piece back together? but it really wasn't bad?? so i really can't be

much help? sorry kathy

Re: Re: RSD up to hip

Hey girls!

One more " food for thought " ...I have had many episodes of severe

cellulitis in my right leg....twice with MRSA in the wound....which will be the

leg

that i will need to count on after the amputation...If I do so choose to do it.

Presently, I have yet another episode of cellulitis in the right leg...it

is very painful...and I can't imagine having to count on this leg right

now...it is so painful, and there is so much drainage just oozing everywhere out

of

the wound...any ideas, ....did you have any problems like this ?

Gentle hugs, girls,

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]

the phantom pains bad but mine wasn't too sever?? uummm? imangine stubbing a

good toe really bad? mine was like that continueually???? the worse is when the

muscle ends start to make a appendage try to move thats not there??? my main

problem for the first few weeks after the accident was very sever muscle

twitches??? my dr that i gave my jigzaw puzzle of a foot to was great?? he

warned me it would happen? so i wasn't to freaked out when they started?? my

toes i had left and the muscles across my foot up to my ankle twitched to the

point? it actually? would wake me???? because my foot would? " jump or jerk " to

the point of comeing out of the sling thing they had it in?? so be prepared for

muscle twitches if you do go with the ampt

Re: Re: RSD up to hip

Hello R. and D.

Thanks so much for getting back to me, girls!! I greatly appreciate it....I

have always grown up with the saying from my mom...if I haven't learned

something new today...then it wasn't a great day...just a good one.

I am so sorry to hear about your plights, girls. It truly sucks. I know

for me...it sure does. I have had RSD now for 26 years. It started in my left

knee cap after getting hit by a line drive in my knee cap. I was a pitcher

for my softball team. The impact was so hard, it hit my knee and flew over

the batting cage from the mound, where I was standing!! My family and I

thought that I was soo lucky since there was no fx, dislocation or

displacement....but then RSD showed it's ugly, cruel and relentless head. Back

then, it was

really almost unheard of...so it took so long to diagnose...but finally it

was. I have it all through out my body now. ...but the left leg is the worst

by far.

...I am so sorry about the accident, hon. Dear God....just when you

are thinking you can handle a horrible situation...then the damned car

accident. Please know that I will certainly keep you in my thoughts and prayers.

I

really hope that they can fix the stim for you and you can get some relief

again withthe help of the stim. Have you ever thought about a pain pump? I

have two stims, and am seriously thinking about another one for my left leg. I

had a pain pump, and when it worked...it was awesome pain relief for

me....especially for the horrific spasms that are associated with RSD.

Unfortunately, I had too many malfunctions, and had to have it removed. I really

miss the

pump. Perhaps you can chat with your PM Dr about it??

....thanks for the info about the phantom pain, sweetie. What exactly

does it feel like? I have heard from some folks that it isn't that

bad...since they do not have it bad, but others cry their eyes out with pain....

I am so sorry to hear about your lawn mower tragedy...that is horrible. God

bless your sense of determination....it is a great thing!!

Having the RSD up to your hip, girls must be extremely challenging! I now

that I have it in both legs, arms, wrists and back.

I will keep you girls in my thoughts and prayers. Hang in!

I wish for all of us pain free days and sleep filled nights!

GEntle hugs to you and all,

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

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[Guest guest]

.....

The doctor should be able to fix the lead. I had mine fixed a year ago n it was

minor especially compared to the implant. Small incision in the same spot from

before. Healed much faster also.

The other drivers insurance should cover the cost of the procedure since she

went thru the red light. You might want to check into it....just a thought......

Deanna

Sent from my iPhone

On Jan 10, 2009, at 3:11 PM, " Diamond " <sediamond57@...> wrote:

> R - This is D from Cols, OH My RSD has also travelled

from a fractured ankle up to my hip - in just a few months. I had

trouble sitting, driving, and was in so much pain that a SCS was

implanted in June'08. Someone ran a red light and hit me, a month

after my SCS surgery, and now my SCS is not working as well as it

did. One lead has moved three spaces down, leaving me 5 contacts for

re programming. Having trouble sitting comfortably again, and I'm

wondering if the RSD is spreading more due to the accident. My foot

is very cold and purple most of the time noe, was pink and healthy

after the surgery in June. What kind of SCS do you have and does it

help your RSD pain? How can it affect phantom pain you have?

Curious to know more about your situation. Bundle up today, my

friend. It is to get even colder here in OH tonight!! Angels around

ya, D

> hi Kathy?? I'm ? R? ?from Ohio?? phantom cam be a real pain?

but as time goes on its severity fades?? about 6 years ago? my foot

went under a push mower while I was mowing a yard for my sis in law??

needless to say it did amputations? then the doc had to do more to

try save my foot and ankle .? I still have faint phantom pain where

pieces of my foot should be , that accident is the reason I now fight

with rsd pain? all the way up my right leg?? at first it was just in

my foot and ankle?? , but its up to my hip?now????? I still get the

phantom? but its not to bad now?? so if you need to chat? I'd love to

have someone to talk to??

>

>

> Re: Re: (no subject)

>

>

>

>

>

>

> Hi, Suzy...

>

> the reason is that my foot and ankle are so severely damaged and

there is so

> much RSD through out that foot and ankle...it is " not salvegable "

as the

> doctors call it. The bones, ligaments and cartilage have all turned

inward.

> they are all permanently inward causing the pain to be even worse.

Of course I

> would never consider this in the other areas where the RSD is

located...even

> where it is moderately severe. The doctors at the cleveland clinic,

johns

> hopkins, mayo clinic and jefferson have all told me and my pm dr

that my foot

> is the worst case they have seen to date. They have taken so many

pictures of

> my foot, and asked me to sign permission slips to teach about RSD,

and to

> 1put if in the New Enland Journal regarding RSD. They have used

these photos

> in medical schools all over.

>

> These doctors have told me that in the past, they did amputations

more

> frequently, but now they only do them for the patients that have no

hope of a

> productive life due to the limb. My RSD is below the knee right

now...it is not

> above the knee...so unless it spreads from the surgery, i would not

have the

> pain any longer from the RSD.

>

> One pain that does ocurr frequently with amputation is phantom

pain. That

> is one of the biggest Draw backs on an amputation.

>

> Thanks for your thoughts and your well wishes.

>

> 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]

Hey R.

Thanks so much for getting back to me...I really appreciate your thoughts

and help.

I am really even more confused than ever....I now AGAIN have a severe case

of cellulitis in my right leg. If I do have the BKA done on the left, how the

hell am I really going to get around? I also think that the MRSA may be

back again....major stinging pain in the wound yet again. Are you ready for

how

the " wound " happened this time....I have severe arthritis in my right

knee....so I put ice packs on the knee, well from the damned wetness from the

pack

being on my leg, and how thin the skin is now from all the cellulitis attacks

and from having venous insuffiency in the R. leg.....the skin just sloughed

off....WTH...beleive me, I wanted to use another capital letter there in

place of H...but I do not want to offend anyone in the group with improper

language.

With regards to the " phantom pain " , ...on the pain scale...how bad does

it feel....you know....0 being no pain, and 10 being the worst in your life.

Of course, I know that everyone's pain tolerance is different, and that

everyone explains their pain levels on different levels....just wondering how

bad

it will be....worst case scenario, if I even get it done.

The real " funny " thing is that I had a wound care doctor about a year ago

tell me that I might wind up losing the right leg if the cellulitis continues

to be as severe and as often, since I am a diabetic with moderate venous

insuffiency. I am just about ready to bang my freaking head into the

wall...but

with my luck..I will either bang it right through or hit my eye into a nail

or something....LOL

How are you today? HOpe you are doing well.

Hey Sue......how are you feeling, my friend? I hope that you are feeling

better...you have been in my prayers and thoughts. I hope you continue to get

better and better, and feel more yourself ASAP!!! Phlebitis truly sucks.

You are just too sweet to have this on top of all the other pain issues you

have, sweetie.

Hey T.

How are you love? HOw is the pain level today? How did you make out with

your family Dr. I hope you told him how poorly you were treated by that so

called " healer " . Hopefully after you report this sorry excuse for a man and a

physician, you will be able to move onward and upward. God knows that you

have done this in more intense and challenging aspects of your life. You go,

girl!!

Deanna...

How are you feeling??? I have been thinking of you and your sweet wee one.

I am so very, very happy for you! I am so blessed with the gift of my

daughter...who is now already 17....OMG...she will be 18 in less than 6

months...My husband and I are not able to have more children...my fault...my

damned

health issues. I feel horrible that I can't let him go through the pregnancy,

labor and newborn, infancy and toddler ages with me. My daughter is from a

previous marriage....from her " biological father...whom we think of as the

sperm donator. My husband is her dad, daddy and father all rolled up into one

beautiful name. I just wish that I could give him memories of a newborn also.

I met him when my daugher was 7....so I am always thrilled for good, loving

folks like yourself who tell me they are pregnant. I am so happy for you, my

friend.

Hey Mike...

How are you? Is everything ok, my friend? I haven't heard from you for a

wee bit....just worried you are not feeling well. No worries about the group,

as you know...we are blessed with awesome moderators, and we can always have

eachother's back...I love to help you out as much as you help me.

Love to you....Kathy

To everyone...I wish for us all pain free days and sleep filled nights.

Gentle hugs to 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://\

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[Guest guest]

thanks! You explain things where I can acutally see them in my

head....thanks, my friend.

hang in and there, and thanks again!

Love,

Kathy G.

Co-Owner

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

steps!

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[Guest guest]

Thanks so much for letting me know...anything you tell me is a great bit of

help, .

Thanks alot, hon.

Thrush does suck. I had it when I was nursing my daughter. i was so anemic

from the blood loss from the c-Section, that I had to stop nursing as I

developed Thrush and passed it to her in the mild. I actually bled for a good

four months after she was born. I wa s alovely color of green at her

baptism...she was baptized when she 2 months old. At least I looked really

irish...huh? LOL

Thanks again, .

Take care!

Kathy G.

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 i think my phantom pain sat at about a 9? to start the minimized?as

time went on

Re: Re: RSD up to hip

Hey R.

Thanks so much for getting back to me...I really appreciate your thoughts

and help.

I am really even more confused than ever....I now AGAIN have a severe case

of cellulitis in my right leg. If I do have the BKA done on the left, how the

hell am I really going to get around? I also think that the MRSA may be

back again....major stinging pain in the wound yet again. Are you ready for how

the " wound " happened this time....I have severe arthritis in my right

knee....so I put ice packs on the knee, well from the damned wetness from the

pack

being on my leg, and how thin the skin is now from all the cellulitis attacks

and from having venous insuffiency in the R. leg.....the skin just sloughed

off....WTH...beleive me, I wanted to use another capital letter there in

place of H...but I do not want to offend anyone in the group with improper

language.

With regards to the " phantom pain " , ...on the pain scale...how bad does

it feel....you know....0 being no pain, and 10 being the worst in your life.

Of course, I know that everyone's pain tolerance is different, and that

everyone explains their pain levels on different levels....just wondering how

bad

it will be....worst case scenario, if I even get it done.

The real " funny " thing is that I had a wound care doctor about a year ago

tell me that I might wind up losing the right leg if the cellulitis continues

to be as severe and as often, since I am a diabetic with moderate venous

insuffiency. I am just about ready to bang my freaking head into the wall...but

with my luck..I will either bang it right through or hit my eye into a nail

or something....LOL

How are you today? HOpe you are doing well.

Hey Sue......how are you feeling, my friend? I hope that you are feeling

better...you have been in my prayers and thoughts. I hope you continue to get

better and better, and feel more yourself ASAP!!! Phlebitis truly sucks.

You are just too sweet to have this on top of all the other pain issues you

have, sweetie.

Hey T.

How are you love? HOw is the pain level today? How did you make out with

your family Dr. I hope you told him how poorly you were treated by that so

called " healer " . Hopefully after you report this sorry excuse for a man and a

physician, you will be able to move onward and upward. God knows that you

have done this in more intense and challenging aspects of your life. You go,

girl!!

Deanna...

How are you feeling??? I have been thinking of you and your sweet wee one.

I am so very, very happy for you! I am so blessed with the gift of my

daughter...who is now already 17....OMG...she will be 18 in less than 6

months...My husband and I are not able to have more children...my fault...my

damned

health issues. I feel horrible that I can't let him go through the pregnancy,

labor and newborn, infancy and toddler ages with me. My daughter is from a

previous marriage....from her " biological father...whom we think of as the

sperm donator. My husband is her dad, daddy and father all rolled up into one

beautiful name. I just wish that I could give him memories of a newborn also.

I met him when my daugher was 7....so I am always thrilled for good, loving

folks like yourself who tell me they are pregnant. I am so happy for you, my

friend.

Hey Mike...

How are you? Is everything ok, my friend? I haven't heard from you for a

wee bit....just worried you are not feeling well. No worries about the group,

as you know...we are blessed with awesome moderators, and we can always have

eachother's back...I love to help you out as much as you help me.

Love to you....Kathy

To everyone...I wish for us all pain free days and sleep filled nights.

Gentle hugs to 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

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