Re: RSD up to hip

[Guest guest]

> 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

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[Guest guest]

As I sit here reading the 4 or 5 hundred messages I've not had time

to read this past month, you skin sloughing off caught my attention.

I keep sores on my RSD affected limbs because the skin just falls off

or I get these little bumps that turn into nasty sores. Then it

takes forever to heal. What do you do your for your wounds caused by

skin falling off? I feel like I've tried everything and nothing

seems to work.

Deborah @ robbd@...

>

> 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!

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