Help Sandi Get Treatment
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Edited/Revised version;
My name is Dino, and this story is about my wife of forty years.
Her name is Sandi Palone, who had worked as a Registered Nurse, and was always going out of her way to help others... helping many people...
from patients, doctors, co-workers, employers...
to family and friends, neighbors...and even strangers.
I have seen changes in her in the last several years, going from a happy, energetic woman...to one who sits ...depressed in a wheelchair or bed.
The pain in her feet has progressed where she had to use orthotics...a cane...then crutches to a walker..and now, using a wheelchair. This increasing pain and her disabilities, month by month, just makes me feel so very helpless!
The worst part for her is that she's lost her independence, her sense of worth, and because of the medications and her inactivity which has caused weight gain...she deals with low self esteem.
Not only has she lost her ability to walk... but losing her career [&] income....unfortunately, we lost our home, had to sell most all of our belongings and we moved into a one room cabin.
Her walking had turned into limping and hobbling at times, then.. not being able to take steps and needing her wheelchair...and now, she spends most all of her days in bed.
We found that she has a rare, "incurable disease" in her feet...known as Ledderhose Disease or a.k.a. Plantar Fibromatosis which started as a small lump in the arch of her left foot, then one developed in the right.
Concerned about the pain increasing is what led her to being diagnosed with this in 2015.
Plantar fibromatosis--topical review.
Veith NT1, Tschernig T, Histing T, Madry H.
Author information
Abstract
Morbus Ledderhose is a rare hyperproliferative disease of the plantar fascia, leading to the formation of nodules. Its origin is unknown. No causal therapy is available, and treatment remains symptomatic. Various therapeutic strategies to alleviate symptoms are available and are adapted to the severity of the disease. In early stages, conservative therapy including nonpharmacological, physical, and pharmacological treatments is applied. If the disease progresses, irradiation of the plantar surface, injections of steroids, shock wave therapy, and partial or complete fasciectomy as an ultimate therapy may be indicated. Novel experimental treatment options including application of fibrinolytic agents are currently being tested, but no controlled, randomized long-term studies are available. This review aims to provide a systematic overview of current established procedures and outlines novel experimental strategies for the treatment of morbus Ledderhose, including future avenues to treat this rare disease.
KEYWORDS:
Ledderhose disease; morbus Ledderhose; plantar fibromatosis; total plantar fasciectomy
PMID:
24043350
DOI:
10.1177/1071100713505535
[PubMed - indexed for MEDLINE]
Being told that the prognosis was not good and the only options were to be referred to pain management...and if the pain was so unbearable, then surgical removal of the nodules would be advised...and of course "only" by an Oncology Surgeon.
Since the cells are similar to cancerous cells which would return and could return larger and worse than before..if all of the tissue was not removed. Even then.. there is no guarantee that the nodules would not return!
The entire bottoms of the feet would have to be removed (from behind the heels to the base of the toes.) Skin grafting would then be required to replace the surface of her feet. Definitely, not an option that we are willing to take at this time.
Another treatment option is having Radiation Treatments done on the feet. It has been successful in shrinking the nodules and slowing the progression of this disease, although... not curing the disease.
This is the option that we are choosing to try.
Others with this same disease have had these treatments with successful outcomes... being able to walk, almost pain free for many years.
Sandi found this information on a facebook page, (D.A.R.T.) who is dedicated to Advocating for Radiation Treatments for this disease.
Also finding support from others, who have the disease and their experiences...mainly those who have had the treatments that have proved to be successful, enabling them to walk again.
We have had a long, hard journey throughout the last several years, fortunately her nursing background has allowed her to research and speak with many doctors and make numerous emails...while searching for the treatment of this disease. Finally, finding a Radiation Oncology Physician in Pittsburgh, who knows the disease ( it was hard to find doctors who were knowledgable about Ledderhose Disease) and is willing to do the treatments.
Radiation Therapy will require daily treatments in Pittsburgh for one week, then to return for daily treatments again in two or three months. Hopefully this will work for us!
To get started this option would be costly for us...our truck is older and unable to make these travels, my wife cannot do the transportation available ( related to pain issues), so our goal is to find help for the finances needed for her to get the treatments, plus all the extra, "cash on hand" which may be needed for rental car expenses, gas money, parking, co-pays, and the unknown medical necessities...not to mention the insurance costs we may have to pay.
All we have to do is have the funds to get started with our trips to Pittsburgh, we already met with the Radiation Oncologist...he is waiting on us..as we are waiting on the funding .
This is why I'm reaching out to try to get help for my wife and try to stop her pain!
We have no financial resources to rely on...and I felt that I had no choice, but to ask for help....to do something for her.
My wife and I will be... so very, very, grateful to all who can give to help achieve this goal. This has affected all aspects of our lives and I sincerely hope to have my wife walk with me again...soon!
My name is Dino, and this story is about my wife of forty years.
Her name is Sandi Palone, who had worked as a Registered Nurse, and was always going out of her way to help others... helping many people...from patients, doctors, co-workers, employers...to family and friends, neighbors...and even strangers.
I have seen changes in her in the last several years, going from a happy, energetic woman...to one who sits ...depressed in a wheelchair or bed.
The pain in her feet has progressed where she had to use orthotics...a cane...then crutches to a walker..and now, using a wheelchair. This increasing pain and her disabilities, month by month, just makes me feel so very helpless!
The worst part for her is that she's lost her independence, her sense of worth, and because of the medications and her inactivity which has caused weight gain...she deals with low self esteem.
Not only has she lost her ability to walk... but losing her career [&] income....unfortunately, we lost our home, had to sell most all of our belongings and we moved into a one room cabin.
Her walking had turned into limping and hobbling at times, then.. not being able to take steps and needing her wheelchair...and now, she spends most all of her days in bed.
We found that she has a rare, "incurable disease" in her feet...known as Ledderhose Disease or a.k.a. Plantar Fibromatosis which started as a small lump in the arch of her left foot, then one developed in the right.
Concerned about the pain increasing is what led her to being diagnosed with this in 2015.
Plantar fibromatosis--topical review.
Veith NT1, Tschernig T, Histing T, Madry H.
Author information
Abstract
Morbus Ledderhose is a rare hyperproliferative disease of the plantar fascia, leading to the formation of nodules. Its origin is unknown. No causal therapy is available, and treatment remains symptomatic. Various therapeutic strategies to alleviate symptoms are available and are adapted to the severity of the disease. In early stages, conservative therapy including nonpharmacological, physical, and pharmacological treatments is applied. If the disease progresses, irradiation of the plantar surface, injections of steroids, shock wave therapy, and partial or complete fasciectomy as an ultimate therapy may be indicated. Novel experimental treatment options including application of fibrinolytic agents are currently being tested, but no controlled, randomized long-term studies are available. This review aims to provide a systematic overview of current established procedures and outlines novel experimental strategies for the treatment of morbus Ledderhose, including future avenues to treat this rare disease.
KEYWORDS:
Ledderhose disease; morbus Ledderhose; plantar fibromatosis; total plantar fasciectomy
PMID:
24043350
DOI:
10.1177/1071100713505535
[PubMed - indexed for MEDLINE]
Being told that the prognosis was not good and the only options were to be referred to pain management...and if the pain was so unbearable, then surgical removal of the nodules would be advised...and of course "only" by an Oncology Surgeon.
Since the cells are similar to cancerous cells which would return and could return larger and worse than before..if all of the tissue was not removed. Even then.. there is no guarantee that the nodules would not return!
The entire bottoms of the feet would have to be removed (from behind the heels to the base of the toes.) Skin grafting would then be required to replace the surface of her feet. Definitely, not an option that we are willing to take at this time.
Another treatment option is having Radiation Treatments done on the feet. It has been successful in shrinking the nodules and slowing the progression of this disease, although... not curing the disease.
This is the option that we are choosing to try.
Others with this same disease have had these treatments with successful outcomes... being able to walk, almost pain free for many years.
Sandi found this information on a facebook page, (D.A.R.T.) who is dedicated to Advocating for Radiation Treatments for this disease.
Also finding support from others, who have the disease and their experiences...mainly those who have had the treatments that have proved to be successful, enabling them to walk again.
We have had a long, hard journey throughout the last several years, fortunately her nursing background has allowed her to research and speak with many doctors and make numerous emails...while searching for the treatment of this disease. Finally, finding a Radiation Oncology Physician in Pittsburgh, who knows the disease ( it was hard to find doctors who were knowledgable about Ledderhose Disease) and is willing to do the treatments.
Radiation Therapy will require daily treatments in Pittsburgh for one week, then to return for daily treatments again in two or three months. Hopefully this will work for us!
To get started this option would be costly for us...our truck is older and unable to make these travels, my wife cannot do the transportation available ( related to pain issues), so our goal is to find help for the finances needed for her to get the treatments, plus all the extra, "cash on hand" which may be needed for rental car expenses, gas money, parking, co-pays, and the unknown medical necessities...not to mention the insurance costs we may have to pay.
All we have to do is have the funds to get started with our trips to Pittsburgh, we already met with the Radiation Oncologist...he is waiting on us..as we are waiting on the funding .
This is why I'm reaching out to try to get help for my wife and try to stop her pain!
We have no financial resources to rely on...and I felt that I had no choice, but to ask for help....to do something for her.
My wife and I will be... so very, very, grateful to all who can give to help achieve this goal. This has affected all aspects of our lives and I sincerely hope to have my wife walk with me again...soon!
Organisator
Sandi Palone
Organisator
Jefferson, PA
