Flora Langel DeKock

Greetings, my name is Flora Langel DeKock. I am a 32 year old mother of a 9 year old millennium baby and a recent graduate with a BS in Religious Studies at the University of Northern Iowa. I excel with computer software and love learning new things.

Flora Langel DeKock: Web Designer, Admin, and Media Relations

Flora Langel DeKock: Web Designer, Admin, and Media Relations

Unfortunately for the last 10 years, I have been learning about something second hand and first hand for the last 2-4 years myself. Sometime prior to when my son was born, my mother twisted her left ankle triggering a normally easily treated disorder called sinus tarsai syndrome which causes the fluid in the ankle to act as if it is infected and create a puss like substance which pushes pressure on the joints in the ankle. Unfortunately as this was not treated properly right away, it is believed the beginning cause of my mothers initial diagnosis of RSDS. Known then as reflexive sympathetic dystrophy syndrome, which wasn’t diagnosed until she was a solid 3 years into the symptoms. Once diagnosed, I started researching what could help her, what could slow it down, what not to do and what to do. As I researched, I found time and time again on sites saying that those afflicted should NOT immobilize the limb, should not ice the area, should not do aggressive physical therapy. Three things that are standard treatment for the symptoms she was suffering without recognizing the disorder was in place. These three things my mother was forced to do for three years until the point where she broke and couldn’t take anymore. My mothers condition and all of the research I suggested women had higher chances of contracting the disorder. At the time, documentation suggested caucasian women over 40 were also more likely to be diagnosed with it as well as there were documents that suggest a genetic link. Since then, this documentation has been altered as they are recognizing it earlier and finding it in children as young as toddlers. There has even been found a significant difference in Vietnam where males have it more frequently than women. Lastly, since the starting of the increase in study, there has not been found any verified genetic link. Since my mothers diagnosis RSDS has progressed into RSD and now been found to be just one of the the many conditions that are believed to be actually complex regional pain syndrome (CRPS).  Reflex sympathetic dystrophy (RSD), Sudeck’s atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy are all believed to be complex regional pain syndrome type I where there is no definitive damage to the nerve the trigger this response in the sympathetic nervous system. With all of this knowledge, I choose to take extra precautions and use warm moist heat packs, avoid immobilizing my limbs, and when they first addressed my sinus tarsai, the doctors ordered a gentle progression of my physical therapy to ensure not to re-injure or advance any of my symptoms of the RSD. My doctors, already familiar with my mothers case, took extra precautions when they preformed the surgery on my ankle that they otherwise could not do for my mother since her overlying issue of the CRPS could be extensively advanced if they were to attempt to treat it. During my surgery they did an epidural to ensure that if the RSD was present that it did not spread and if it was not present that they did not trigger it. As this is NOT a typical preventative procedure, I was extremely lucky to have such a supportive set of doctors for my case. The doctors slowly and steadily watched my progression after the surgery where my symptoms that suggested RSD was present continued. At this point my surgeon sent me in for evaluation and treatment by one of the best doctors he knew in the area. I had two injections of bupivicane and guided physical therapy for approximately 5 weeks. After an illness and inability to get to the office, I was denied continuing by my insurance. From that point on, I continued home based physical therapy with no supervision. Since the muscles kept ceasing up, I opted to also start going to a masseuse weekly to help address the issues with the muscles that caused them to tighten. Since Fall of 2008, I have since seen a specialist that cannot confirm or deny the presence of RSD at that time because he did not see the symptoms. After running a series of tests, he could not find any signs of the RSD being present, but did find I ran positive for Lyme’s Disease as well. Unfortunately, my last known exposure to a tick was when I was 11 years old. The Lyme’s disease could have been influencing the RSD or the RSD could have triggered the Lyme’s disease to resurface. I am still having problems with swelling and am currently on Ibuprofen and Neurontin 300 mg once a day to prevent the “neurological disorder” that causes stabbing pains all across my body and swelling mostly in my limbs but recently moved into my chest. My primary physician has, as of June, opted for an injection of a steroid to address the swelling in my body and is now again pursuing leads to what is causing the swelling effecting both my soft tissue and my joints. Due to the potential side effects my doctors now testing for explanations for the symptoms. Most recently he tested for rheumatoid arthritis and Lupus and found me negative for both. Dependent on how the symptoms act they will pursue more tests at that time. I’ve been extremely lucky to have already educated doctors in the symptoms and signs of RSD. Unfortunately, at the cost of my mothers health. In regards to my personal life… As I said, I am a mother of a millennium baby. Joseph is my world. He takes care of me if I let him and I help him with what ever I can. I am technically a single mother but my ex of near 6 years and long time friend Leo still lives and assists me and my son with our life challenges. If Joe is sick, he cares for him. And if I’m sick, he sends me to bed and takes care of everything else. I am very lucky and have so much to be grateful for. RSD in many ways opened my eyes to not just the horribleness of pain that the body TRULY is capable of creating, but also can show you who really cares about you and who is wavering. I only hope you are as bless with the amount of support I have been.


 

Update:

Greetings, my name is Flora Langel DeKock. I am now a 35 year old mother of a 13 year old millennium baby and a recent graduate with a BS in Religious Studies at the University of Northern Iowa. I excel with computer software and love learning new things. Unfortunately for the last 10 years, I have been learning about something second hand and first hand for the last 2-4 years myself. Sometime prior to when my son was born, my mother twisted her left ankle triggering a normally easily treated disorder called sinus tarsai syndrome which causes the fluid in the ankle to act as if it is infected and create a puss like substance which pushes pressure on the joints in the ankle. Unfortunately as this was not treated properly right away, it is believed the beginning cause of my mother’s initial diagnosis of RSDS. Known then as reflexive sympathetic dystrophy syndrome, this wasn’t diagnosed until she was a solid 3 years into the symptoms. Once diagnosed, I started researching what could help her, what could slow it down, what not to do and what to do. As I researched, I found time and time again on sites saying that those afflicted should NOT immobilize the limb, should not ice the area, and should not do aggressive physical therapy. Three things that are standard treatment for the symptoms she was suffering without recognizing the disorder was in place. These three things my mother was forced to do for three years until the point where she broke and couldn’t take anymore. My mother’s condition and all of the research I suggested women had higher chances of contracting the disorder. At the time, documentation suggested Caucasian women over 40 were also more likely to be diagnosed with it as well as there were documents that suggest a genetic link. Since then, this documentation has been altered as they are recognizing it earlier and finding it in children as young as toddlers. There has even been found a significant difference in Vietnam where males have it more frequently than women. Lastly, since the starting of the increase in study, there has not been found any verified genetic link. Since my mother’s diagnosis RSDS has progressed into RSD and now been found to be just one of the many conditions that are believed to be actually complex regional pain syndrome (CRPS).  Reflex sympathetic dystrophy (RSD), Sudeck’s atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy are all believed to be complex regional pain syndrome type I where there is no definitive damage to the nerve the trigger this response in the sympathetic nervous system. With all of this knowledge, I choose to take extra precautions and use warm moist heat packs, avoid immobilizing my limbs, and when they first addressed my sinus tarsai, the doctors ordered a gentle progression of my physical therapy to ensure not to re-injure or advance any of my symptoms of the RSD. My doctors, already familiar with my mother’s case, took extra precautions when they performed the surgery on my ankle that they otherwise could not do for my mother since her overlying issue of the CRPS could be extensively advanced if they were to attempt to treat it. During my surgery they did an epidural to ensure that if the RSD was present that it did not spread and if it was not present that they did not trigger it. As this is NOT a typical preventative procedure, I was extremely lucky to have such a supportive set of doctors for my case. The doctors slowly and steadily watched my progression after the surgery where my symptoms that suggested RSD was present continued. At this point my surgeon sent me in for evaluation and treatment by one of the best doctors he knew in the area. I had two injections of bupivicane and guided physical therapy for approximately 5 weeks. After an illness and inability to get to the office, I was denied continuing by my insurance. From that point on, I continued home based physical therapy with no supervision. Since the muscles kept ceasing up, I opted to also start going to a masseuse weekly to help address the issues with the muscles that caused them to tighten. Since Fall of 2008, I have since seen a specialist that cannot confirm or deny the presence of RSD at that time because he did not see the symptoms. After running a series of tests, he could not find any signs of the RSD being present, but did find I ran positive for Lyme’s Disease as well. Unfortunately, my last known exposure to a tick was when I was 11 years old. The Lyme’s disease could have been influencing the RSD or the RSD could have triggered the Lyme’s disease to resurface. I am still having problems with swelling and am currently on Ibuprofen and Neurontin 300 mg once a day to prevent the “neurological disorder” that causes stabbing pains all across my body and swelling mostly in my limbs but recently moved into my chest. My primary physician has, as of June, opted for an injection of a steroid to address the swelling in my body and is now again pursuing leads to what is causing the swelling affecting both my soft tissue and my joints. Due to the potential side effects my doctors now are testing for explanations for the symptoms. Most recently he tested for rheumatoid arthritis and Lupus and found me negative for both. Dependent on how the symptoms act they will pursue more tests at that time. I’ve been extremely lucky to have already educated doctors in the symptoms and signs of RSD. Unfortunately, at the cost of my mother’s health. In regards to my personal life… As I said, I am a mother of a millennium baby. Joseph is my world. He takes care of me if I let him and I help him with whatever I can. I am technically a single mother but my ex of near 6 years and longtime friend Leo still lives and assists me and my son with our life challenges. If Joe is sick, he cares for him. And if I’m sick, he sends me to bed and takes care of everything else. I am very lucky and have so much to be grateful for. RSD in many ways opened my eyes to not just the horribleness of pain that the body TRULY is capable of creating, but also can show you who really cares about you and who is wavering. I only hope you are as bless with the amount of support I have been. http://www.naanad.com/

Web Designer, Admin, and Media Relations

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Mother of a millennium baby.
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