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Leg Ulcer - Possible Amputation

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Good morning. My name is Christine and I have Scleroderma. I have an ulcer on my leg that is 6" wide x 8" long varies from 1/4" deep in different spots. I have had several surgical debreedment, tried every cream and pill out there to heal. Nothing has ever worked. It just keeps getting bigger and bigger. I was going to the wound care clinic at a local hospital and after 2 years (the ulcer started October 04) many operations, debriding, creams, medications, failed Apligraf and a failed skin graft, their solution was to amputate from my knee down. I'm just not ready for that yet.

 

My ulcer is pure "meat" with exposed bone. My current bandaging is bleach and water, which just adds to the level of pain. I'm a single mother of a 7 year old little girl and need to stay active to continue to be a great mom. I literally can't function when the pain overtakes me. While I live in Michigan, thankfully I found a wonderful doctor in Cleveland that is willing to give me one more try. I realize if this doesn’t work that I will have to amputate.

 

Peace and Love to all my Sclero brothers and sisters in my situation :)

Christine

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Christine~

 

My heart goes out to you and all the pain your going thru. I hope you soon get the help you are looking for.


Take care and stay warm,

 

Michelle

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Hello, Christine and welcome to the Forums. I am so sorry that your disease has caused you so much difficulty and excruciating pain. Have you been seen by a scleroderma specialist? Having the right medical professional to help you cope with your immediate crisis and future management of the disease is important. I hope it is not too late to save your leg and I wish you the best of luck with your Cleveland doctor. Look up some names of scleroderma experts at this link.

There are some excellent links on pain management on our medical pages:

Pain Management. Pain can be an acute pain that comes on suddenly and goes away quickly. Pain can also be a chronic pain that comes on slowly and persists for months and even years. Many people with scleroderma suffer from chronic pain; therefore, in order to maintain an acceptable quality of life it is important to learn how to manage the pain. ISN

Overview
Pain and Scleroderma
Exercise and Arthritis
Managing Pain
Pain Treatments
Pet Therapy
Research on Pain
Personal Stories

Having a good support structure is important, so I hope you can find part of that here in the forums. Hugs to you.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Christine,

I remember you from the old board.... you are still having issues? I can't believe it! My heart goes out to you...I know how hard it is to be sick and try to be a great mom. The pressure of trying to bring up a child is alot and to add something like this on top it is unbelieveable. Please don't give up. Hopefully this new doctor will be able to give you treatment that will heal your leg. Please keep us posted!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Dear Christine,

 

I am brought to tears by your story. I hate the horrible things this disease does to people! I can only imagine what you have been going through - and trying to be mom all at the same time.

 

I am glad you are fighting amputation and have another doctor to try. I have the same question jefa did: Have you been seen by a sclero specialist?

 

Also have you tried Viagra? Mary is Texas swears by it. I'm sure you probably have exhausted all your medication options so forgive me if my suggestions aren't helpful.

 

You are in my thoughts!

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Christine,
I am so sorry that you are having to deal with this... and for so long! There is a picture of a leg ulcer on this site that I looked at and it only made my heart break even more for you. I really hope you can get it healed.

We do have a page on digital ulcers. Some of the treatments there might also work for your leg ulcer if you haven't tried them already. It sounds like you've tried lots of stuff. Hopefully your Cleveland doctor will come upon that miracle drug / treatment that clears this thing up. My heart goes out to you.

I'm so glad that you have come back to us. We're here for you Darlin'

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Christine, I'm sorry to hear your having so much trouble. My sister is an RN up in Canada, and the hopital she works in, uses this machine called a Wound Vac, which is used for large wounds and ulcers. They are used often up in Canada. Maybe you can ask your Doctor if he has heard of this machine. Well I sure hope you can get some relief. Take care.

 

Jackie S.

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Hi Christine!

I'm sorry you are having such pain and problems with a leg ulcer that won't heal. I too would fight amputation. In fact, I did fight amputation with a finger ulcer and I found one doctor who was familiar with sclero who supported me. The finger actually healed eventually and I'm so glad I didn't let them amputate. I had the ulcer for about a year.

The next time I got an ulcer, sclero doctors had started using Viagra to promote circulation to the extremities and I was put on Viagra and that ulcer healed up in a week or two! A miracle! I don't know whether it would help a leg, but I don't see why not!

I agree with the others that seeing a sclero specialist is crucial. No matter how nice or kind the doctors are, if they don't know about sclero, they can really bungle your case!

 

And, Jackie, I wonder if that machine called Wound Vac is the same as a bariatric oxygen chamber. They use those at the wound care center here.

 

Mary in Texas

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Christine,

Have they tried the hyperbaric chamber- oxygen therapy? I know many people that have done that and it has helped. I am so sorry that you are suffering with this. I send you a big hug! :D

Nan

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My thoughts are sincerely with you at this moment. Have been dealing with the same issue on my toe for four months. I'm scared because of the latest NO SMOKING ads on TV recently in the US. I know the pain you speak of. Last night, was soaking my foot and crying, screaming and banging the table all at the same time.

 

My two dogs looked as if I lost my mind, but the pain nearly brought me to the edge. Getting two or less hours of sleep a night and working full time has begun to take it's toll. I began thinking amputation would be a blessing. Today was the first day in months that I was able to ingest a sandwich at lunch and be able to retain it for the day. Keep fighting, and if this injury does not promote damage in other ways to your body, keep fighting to retain your leg.

 

Do you have someone who could help you with your child?; mother, husband? Stress is a great inhibitor to good health. Please keep up your spirits and faith. I was concerned about four months of pain, and you've been through so much more for so longer, I feel ashamed for feeling sorry for myself. Will keep you in thoughts and spirit. Please keep us apprised of your results.


Tru

 

It is what it is...........

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Sorry I didn't get back to you sooner, Mary. The Wound Vac is not the same as the Bariatric Oxygen Chamber. I do know what that is and the way my sister described the Wound Vac, it is nothing like that. You don't go inside a machine, a small machine is set beside you and it works just like a vacume. A large rubber type of bandage is put over the wound, it sounds like it would be like a suction type of bandage. According to my sister there having alot of success with them in Canada.

 

Jackie S.

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Hi Christine,

 

I think you had wonderful advice here and I just wanted to give you A BIG HUG and wishes that you can find a way to overcome this. I am sure you have looked for the very best clinic to find an answer. My thoughts are with you as this has to be heart wrenching. I have alot of vascultiis and bruising and worry down the road that circulation will be a huge issue. Susie54

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