Radiation Oncologist Appointment is set, April 2015
I talk with my family even more. I contact Dr. Hochman's office and make a consultation appointment for June 2015 on a Friday.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed
within this website or any related or advertised sites are not intended
to diagnose, treat, cure or prevent any disease. Any advice or comments
given should not be relied upon as individual medical advice. No doctor
patient relationship is intended everyone is advised to consult their
own doctors for medical advice specific to them. There is no endorsement
nor recommendation of any treatment nor physician noted on this site.
Tuesday, March 15, 2016
Monday, March 14, 2016
2015 NEW RADIOLOGY ONCOLOGIST FOUND FOR MY LEDDERHOSE DISEASE
Given I could never obtain my records to send to the local R.O. I could not see her. I wasn't willing to wait and moved onto speaking with others that had used another R.O. The closest R.O. I could find was Jacksonville, FL and Tampa, FL. I speak with both facilities. I speak again with people have used Dr. Lawrence Hochman, R.O. with Florida Cancer Affiliates in New Trinity, Florida (just outside Tampa, FL). I ended up self referring myself to him since I could not obtain my medical records.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
Dr. Lawrence Hochman has treated several people I spoke with. His familiarity of the disease and personal recommendations was why I chose him.
http://floridacancer.com/physicians/lawrence-hochman-do-facro/
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Saturday, March 12, 2016
2015 MEDICAL RECORDS NIGHTMARE DURING MY LEDDERHOSE TREATMENT SEARCH
The medical record nightmare 2015
So you think your medical records are yours and you just sign a form and get them, right? Well I did too! I actually went to my podiatrist office and signed the form for the records to be released to UAB. A few days later I contact Dr. Ruby Meredith's office and find out they don't have my records, hmmm. I phone the podiatrist office and they tell me their computer system was down, but they would get them sent in a couple of days. I think that's actually going to happen. I phone back and find out the computer is still down. Weeks later, the server is down now and still no records. When I filled out the form for the release they asked why I wanted them, I just said I wanted to get another evaluation. Long story short - I was NEVER able to get the records for myself nor sent to Dr. Meredith. Do I feel the server was down and they were unable to get me the records - OR - do I believe the doctor knew they were going to the R.O. dept and just conveniently found the server to be the reason for my records not to be available. I'll not post my thoughts. I will say this - until this day in 2016 I have NEVER found a doctor to be willing to even discuss RT as an option for this disease. They clam up and act like a mute.
Note: Radiation Therapy is an often used therapy for this disease in another country. Many times we are left to use other studies as our(meaning the USA) own research since we are not providing the medical treatment here and doing the studies here. Surgeons seem to tell people that R.T. will give you cancer. Thankfully with this low dose and the typical age of people who get this disease, our risk is less than 1%. I've learned a lot and one of the most important things I have learned is that surgeons are trained to be just that, a surgeon. They have no training on R.T. and I believe this is a black hole for them. It's not their expertise and they have no knowledge about it. Also, if R.T. is successful they lose business. So, I can see why they are not R.T. friendly.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
So you think your medical records are yours and you just sign a form and get them, right? Well I did too! I actually went to my podiatrist office and signed the form for the records to be released to UAB. A few days later I contact Dr. Ruby Meredith's office and find out they don't have my records, hmmm. I phone the podiatrist office and they tell me their computer system was down, but they would get them sent in a couple of days. I think that's actually going to happen. I phone back and find out the computer is still down. Weeks later, the server is down now and still no records. When I filled out the form for the release they asked why I wanted them, I just said I wanted to get another evaluation. Long story short - I was NEVER able to get the records for myself nor sent to Dr. Meredith. Do I feel the server was down and they were unable to get me the records - OR - do I believe the doctor knew they were going to the R.O. dept and just conveniently found the server to be the reason for my records not to be available. I'll not post my thoughts. I will say this - until this day in 2016 I have NEVER found a doctor to be willing to even discuss RT as an option for this disease. They clam up and act like a mute.
Note: Radiation Therapy is an often used therapy for this disease in another country. Many times we are left to use other studies as our(meaning the USA) own research since we are not providing the medical treatment here and doing the studies here. Surgeons seem to tell people that R.T. will give you cancer. Thankfully with this low dose and the typical age of people who get this disease, our risk is less than 1%. I've learned a lot and one of the most important things I have learned is that surgeons are trained to be just that, a surgeon. They have no training on R.T. and I believe this is a black hole for them. It's not their expertise and they have no knowledge about it. Also, if R.T. is successful they lose business. So, I can see why they are not R.T. friendly.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Friday, March 11, 2016
2014 DART GROUP ON FACEBOOK, I FIND A LOCAL RADIOLOGY ONCOLOGIST FOR MY LEDDERHOSE DISEASE
DART - Dupuytren's Advocates for Radiation Therapy is formed and I join in April 2014!
https://www.facebook.com/groups/1622748151282109/
This group's sole focus is on Radiation Therapy for this disease. It has an immediately influx of people. People who are interested in it AND people who have had it!. I soak every single post and article written. I contact people who have had this treatment. I even find someone in my own town of Birmingham, AL that has been treated, AND they have been treated locally at University of Alabama at Birmingham Hospital (UAB). I start conversation with my family about this possible treatment. I believe I have literally gotten them sick from hearing about the pain that they are happy as ever there may be some treatment available.
I connect with several people on this DART group and discuss their situation. I call UAB and speak with Dr. Ruby Meredith's office (Radiation Oncology dept at UAB). Dr Meredith treated a gentleman in this group appx 5 years ago. His disease has stabilized and has had no further growth. I am feeling reluctant and scared but I make the call and find out she's treated Dupuytren's (the hand), but not Ledderhose (the feet). BUT, she's willing to talk with me. She needs my medical records to show the diagnosis.
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
https://www.facebook.com/groups/1622748151282109/
This group's sole focus is on Radiation Therapy for this disease. It has an immediately influx of people. People who are interested in it AND people who have had it!. I soak every single post and article written. I contact people who have had this treatment. I even find someone in my own town of Birmingham, AL that has been treated, AND they have been treated locally at University of Alabama at Birmingham Hospital (UAB). I start conversation with my family about this possible treatment. I believe I have literally gotten them sick from hearing about the pain that they are happy as ever there may be some treatment available.
I connect with several people on this DART group and discuss their situation. I call UAB and speak with Dr. Ruby Meredith's office (Radiation Oncology dept at UAB). Dr Meredith treated a gentleman in this group appx 5 years ago. His disease has stabilized and has had no further growth. I am feeling reluctant and scared but I make the call and find out she's treated Dupuytren's (the hand), but not Ledderhose (the feet). BUT, she's willing to talk with me. She needs my medical records to show the diagnosis.
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Thursday, March 10, 2016
2014 FACEBOOK FORUMS ON DUPUYTRENS and LEDDERHOSE, A LIFE SAVER FOR ME
The Facebook Dupuytren's Contracture group leads me to a new Facebook group April 2014
So I joined the Dupytren's Contracture Facebook group. https://www.facebook.com/groups/DupuytrensContracture/There are tons of people from the USA on here and some of them even have Ledderhose Disease! I am finally feeling validated for my feelings. Many people are experiencing the exact same symptoms I am having. Many people on this site have the more common Dupuytren's Disease and many of them are having surgery for it. I read more and find out that disturbing this collagen seems to put this disease into an active mode and it starts to grow. I found out there is NO CURE. Cutting it out is not an answer, but seems more like a curse. My pain is at an even more all-time high and honestly, I am willing to do anything for some help at this point.
While on this group, there is a small sector of people discussing this "radiation therapy" I had read about in Germany. AND....someone in the USA has had this done! I am sucked into this group, trying to absorb all the information I can. The comments being made about this seem to be concerning, why would anyone elect to have radiation therapy? Isn't that for people that have cancer? I've never known anyone to elect to have radiation therapy.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
So I joined the Dupytren's Contracture Facebook group. https://www.facebook.com/groups/DupuytrensContracture/There are tons of people from the USA on here and some of them even have Ledderhose Disease! I am finally feeling validated for my feelings. Many people are experiencing the exact same symptoms I am having. Many people on this site have the more common Dupuytren's Disease and many of them are having surgery for it. I read more and find out that disturbing this collagen seems to put this disease into an active mode and it starts to grow. I found out there is NO CURE. Cutting it out is not an answer, but seems more like a curse. My pain is at an even more all-time high and honestly, I am willing to do anything for some help at this point.
While on this group, there is a small sector of people discussing this "radiation therapy" I had read about in Germany. AND....someone in the USA has had this done! I am sucked into this group, trying to absorb all the information I can. The comments being made about this seem to be concerning, why would anyone elect to have radiation therapy? Isn't that for people that have cancer? I've never known anyone to elect to have radiation therapy.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Wednesday, March 9, 2016
2013/2014 DUPUYTREN'S CONTRACTURE FACEBOOK FORUM FOUND
I found a Facebook group for Dupuytren's Contracture! Late 2013/early 2014
https://www.facebook.com/groups/DupuytrensContracture/
One night while laying in the bed with my heating pad on my right foot (as always), I am in so much pain and I roll over, grab my ipad and on a whim I log onto Facebook and search to see if there is a group formed about this disease. Low and behold there is!!!! It is called Dupuytren's Contracture. I immediately apply to join the group. It's a closed group and by now I can't sleep at all. I have to wait to be admitted to the group. It has almost a thousand people in it. It was an Oh My Gosh moment for me. I was admitted the following day and this is the link that will change my life forever!
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Monday, March 7, 2016
2013, MY INTERNET BREAK THROUGH ABOUT DUPUYTRENS and LEDDERHOSE
My 2013 Internet break through!
While searching on the internet I finally found out this benign nodule is also called a plantar fibroma. More research led me to Ledderhose Disease. I then find it is associated with Dupuytren's Disease. When I look up Dupuytren's Disease and I see advanced photos, I realize this is exactly what my Dad has in his hands! I cannot tell you the shock and saddness I felt when I found this out. Devastated was an understatement!
I research further for an answer, actually I am on a mission to find the treatment/cure. I am in more pain than I could every imagine for a "benign and non-painful" disease. The more I read, the more devastating I become. Why? Because my dad has Dupuytren's Contracture and his hands are contracted. I am 52 years old now and I do not want contracted feet!
More research and I find some that say in Germany they have actually delivered radiation therapy as a treatment (not a cure) for this disease on the hands and the feet. And that this has been done in Germany for years (meaning just over 10 years). Better info comes as I keep researching this that radiation therapy helps the pain and reduces nodules about 75% of the time. Now....keep in mind this is in Germany and I live in the USA.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease-.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
While searching on the internet I finally found out this benign nodule is also called a plantar fibroma. More research led me to Ledderhose Disease. I then find it is associated with Dupuytren's Disease. When I look up Dupuytren's Disease and I see advanced photos, I realize this is exactly what my Dad has in his hands! I cannot tell you the shock and saddness I felt when I found this out. Devastated was an understatement!
I research further for an answer, actually I am on a mission to find the treatment/cure. I am in more pain than I could every imagine for a "benign and non-painful" disease. The more I read, the more devastating I become. Why? Because my dad has Dupuytren's Contracture and his hands are contracted. I am 52 years old now and I do not want contracted feet!
More research and I find some that say in Germany they have actually delivered radiation therapy as a treatment (not a cure) for this disease on the hands and the feet. And that this has been done in Germany for years (meaning just over 10 years). Better info comes as I keep researching this that radiation therapy helps the pain and reduces nodules about 75% of the time. Now....keep in mind this is in Germany and I live in the USA.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease-.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
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