RE: need advice and some suggestions....please

[Guest guest]

I wish I could help u kathi, but I know nothing about amputations. I am sorry u

r suffering so much. I didn't take it as complaining at all....we all have our

issues! Good luck on finding the info u need.

Deanna

Sent from my iPhone

On Dec 14, 2008, at 8:52 PM, KGAVI@... wrote:

Hey gang...

I have been back and forth to the docs last week...a ton of spasms and

increased burning pain. Scale of 9-10..

I have been seen by Jefferson University, Cleveland Clinic, Temple

University, and have had consults with records and photos of my foot by the Mayo

clinic, s Hopkins and two well known specialists in RSD...gurus if you will.

98% of these doctors have strongly encouraged me to get a below the knee

amputation for my left foot and ankle RSD. I have had RSD now for 26 years. I

have never had it this bad, but it is almost as bad in my right wrist.

Has ANYONE had an amputation for ANYTHING...and if so...what was the outcome

for you...

Also...has anyone had an amputation for RSD...and if so....what was the

outcome for YOU...

I know all the horror stories that are out there what COULD happen with an

amputated limb with RSD.but I would like to know first hand from someone who

has LIVED through it and can really honestly tell me their story.and to see if

I can safely have one done. I realy can no longer take this pain and the

spasms.they are slowly tearing me apart.and I realy can no longer take them.

I am sorry for complaining so much, guys, I know we all have pain and

suffering in this group, and not just me...I just really am strugling and need

my

buddies to help me out.

I love you all and wish for all of us pain free days and sleep filled nights.

Gentle hugs to you all,

Kathy G.

Co-Onwer

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[Guest guest]

Hay Kathy,, Im so sorry you are having so much pain.. I have known of one lady

that did have a leg takin off because of RSD. Her right leg was completly dead,

it was black. She fought with Drs for years about it. some wanted it off and

others just wanted her to live with it. She worked at K-mart with my sister. I

have not seen her since its been done,so im not sure how she is doing. I will

find out from my sister if she has heard from her...I wish you only the best

hon. If you need to talk ,you know my e-mail and my phone #... Please let me

know if I can help you in anyway.....

                      Love you and soft soft hugs

                                              T

 lisa

Hey gang...

I have been back and forth to the docs last week...a ton of spasms and

increased burning pain. Scale of 9-10..

I have been seen by Jefferson University, Cleveland Clinic, Temple

University, and have had consults with records and photos of my foot by the Mayo

clinic, s Hopkins and two well known specialists in RSD...gurus if you will.

98% of these doctors have strongly encouraged me to get a below the knee

amputation for my left foot and ankle RSD. I have had RSD now for 26 years. I

have never had it this bad, but it is almost as bad in my right wrist.

Has ANYONE had an amputation for ANYTHING...and if so...what was the outcome

for you...

Also...has anyone had an amputation for RSD...and if so....what was the

outcome for YOU...

I know all the horror stories that are out there what COULD happen with an

amputated limb with RSD.but I would like to know first hand from someone who

has LIVED through it and can really honestly tell me their story.and to see if

I can safely have one done. I realy can no longer take this pain and the

spasms.they are slowly tearing me apart.and I realy can no longer take them.

I am sorry for complaining so much, guys, I know we all have pain and

suffering in this group, and not just me...I just really am strugling and need

my

buddies to help me out.

I love you all and wish for all of us pain free days and sleep filled nights.

Gentle hugs to you all,

Kathy G.

Co-Onwer

************ **Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000010)

[Guest guest]

At 28 it would freak me out if my doctor said he thought the best

thing for my RSD was amputation. I'm very sorry to hear that you

have been given this news.

I've never had anything amputated, but know several people who have.

Of course, none of them have RSD. I'm sure amputating a body part

with RSD would be much different. The people I know with amputations

had to have amputations because of accidents. My dad is missing two

fingers because of a job accident, I have a third cousin missing a

leg, and a second cousin missing half a leg, half an arm, and half a

foot. The second cousin was in a car accident. Downed power lines

were on the vehicle and he tried to climb out. He's lucky to have

survive. I don't know about the second and third cousins, but dad

has had to deal with phantom feelings (I think that's what they are

called). Although the fingers aren't there he still feels them and

still has pain in them.

This info probably isn't very helpful, but that's all I know about

amputation.

>

> Hey gang...

>

> I have been back and forth to the docs last week...a ton of spasms

and

> increased burning pain. Scale of 9-10..

>

> I have been seen by Jefferson University, Cleveland Clinic, Temple

> University, and have had consults with records and photos of my

foot by the Mayo

> clinic, s Hopkins and two well known specialists in RSD...gurus

if you will.

>

> 98% of these doctors have strongly encouraged me to get a below the

knee

> amputation for my left foot and ankle RSD. I have had RSD now for

26 years. I

> have never had it this bad, but it is almost as bad in my right

wrist.

>

> Has ANYONE had an amputation for ANYTHING...and if so...what was

the outcome

> for you...

>

> Also...has anyone had an amputation for RSD...and if so....what was

the

> outcome for YOU...

>

> I know all the horror stories that are out there what COULD happen

with an

> amputated limb with RSD.but I would like to know first hand from

someone who

> has LIVED through it and can really honestly tell me their

story.and to see if

> I can safely have one done. I realy can no longer take this pain

and the

> spasms.they are slowly tearing me apart.and I realy can no longer

take them.

>

> I am sorry for complaining so much, guys, I know we all have pain

and

> suffering in this group, and not just me...I just really am

strugling and need my

> buddies to help me out.

>

> I love you all and wish for all of us pain free days and sleep

filled nights.

>

> Gentle hugs to you all,

>

> Kathy G.

> Co-Onwer

> **************Make your life easier with all your friends, email,

and

> favorite sites in one place. Try it now.

> (http://www.aol.com/?optin=new-

dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

>

>

>

[Guest guest]

Hey,

My neurosurg's exact words....if the pain is so bad that you want to

amputate..get a SCS? Does your SCS not help the pain?

Kathy,

I am sorry to say I have taken care of so many patients that if you did have

your leg amputated....your brain would not know that your leg wasn't

there....you could (not would but could) still have the pain. I cant

imagine a decision like that....to not have the use of it and it still to

hurt. For me, that would rule out an amputation. (IMHO)

Deb RN

From: Stimulator [mailto:Stimulator ] On

Behalf Of KGAVI@...

Sent: Sunday, December 14, 2008 10:53 PM

Stimulator

Subject: need advice and some suggestions....please

Hey gang...

I have been back and forth to the docs last week...a ton of spasms and

increased burning pain. Scale of 9-10..

I have been seen by Jefferson University, Cleveland Clinic, Temple

University, and have had consults with records and photos of my foot by the

Mayo

clinic, s Hopkins and two well known specialists in RSD...gurus if you

will.

98% of these doctors have strongly encouraged me to get a below the knee

amputation for my left foot and ankle RSD. I have had RSD now for 26 years.

I

have never had it this bad, but it is almost as bad in my right wrist.

Has ANYONE had an amputation for ANYTHING...and if so...what was the outcome

for you...

Also...has anyone had an amputation for RSD...and if so....what was the

outcome for YOU...

I know all the horror stories that are out there what COULD happen with an

amputated limb with RSD.but I would like to know first hand from someone who

has LIVED through it and can really honestly tell me their story.and to see

if

I can safely have one done. I realy can no longer take this pain and the

spasms.they are slowly tearing me apart.and I realy can no longer take them.

I am sorry for complaining so much, guys, I know we all have pain and

suffering in this group, and not just me...I just really am strugling and

need my

buddies to help me out.

I love you all and wish for all of us pain free days and sleep filled

nights.

Gentle hugs to you all,

Kathy G.

Co-Onwer

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

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010> & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

thanks, Deanna!

how are you doing, hon? hope well!

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