Laura's IDEO Trips
Donation protected
Hello, my name is Laura. I am asking for help to fund my travels to Gig Harbor WA. for an Intrepid Dynamic Exoskeletal Orthosis (IDEO*).
I have struggled with debilitating chronic pain since 2001 after my left ankle was broken in many places when I was pregnant with my son. My son will be 18 and heading off to college next fall, time moves so fast! I had surgery to remove bone fragments and fix displaced fractures a year and a half later. It was this surgery that caused my CRPS. CRPS is a progressive nerve disorder.
Complex Regional Pain Syndrome, CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. I am type 2 intractable. Having this has made me extremely warry of any surgery. What is CRPS?
I went through years of pain treatments; injections, medications, nerve blocks, various braces/casts, also various plastic AFO’s. They couldn’t make me any promises surgically at this time. It finally got to the point where my life was slowly coming to a rolling stop I could no longer work on my feet. I gave up a career in health care I loved and went back to school
Jump ahead to July 29, 2014, I couldn’t walk a block without extreme pain and swelling. I would bike my canine best friend Dallas around for his runs. I could no longer hike, nor just walking on flat land for any lenght of time. The biked ending up with me giving up my extreme fear of surgery. I went off my bike landing full force on my left leg. This resulted in a rather large painful Tibial Plateau fracture along with a torn ACL and an IT Band. The ER took scans of L ankle 'we can't tell what is old and new." “Holy crap what happened… how do you walk?” then "That is fine you will not be walking on it for a long while" they aced it put on an air strap. I went through 10 weeks completely immobilized, another 8 weeks of limited physical therapy, do too the state of my ankle.
I could no longer hold off surgery on the beast, there was nothing left to heal. I had to have a Triple Arthrodesis, no if and or butts. My fantastic orthopedic surgeon Dr. Baker did warn that I could have a re-occurrence of the RSD/CRPS and worsening symptoms. Oh boy did it ever. My worst nightmares ended up coming to fruition. I had my first triple arthrodesis 2/20/15 this first one failed due to non-union of all three of my sites. My CRPS also complicated this I have less venous supply and nerve damage.
Surgery 1
I went back for my second fusion 9/18/15. With complications from my epidural pain catheter, I have been in a constant CRPS flare since. This fusion is never going to be able to hold due to malunion, skeletal deformity, nerve, tendon and muscle wasting a loss. I am 7 months out from surgery; I am still air casted and can only apply 40% my body weight to my L foot. My progress has stopped. Crutches are my best friend so is my trusty scooter.
Amputation and the IDEO were put on the table.
I have been off my feet since July 2014. I haven’t been without pain, well I don’t really remember when. I can no longer have any kind of surgical intervention other than a spinal cord stimulator for pain control and my choice of a below the knee amputation (BKA) or the IDEO. My team of doctors has been fighting beside me for months to have my insurance cover the IDEO. We finally got it approved.
CRPS flare
CRPS waxy skin, no arch.
Thankfully, my insurance is covering the full cost of my IDEO after a 5 month battle; an IDEO/ExoSym was first created by Prosthetist Ryan Blanck in 2009 for service members with limb salvage conditions as an alternative to amputation. Since its development over many service members and a growing number of civilians have received the device. The IDEO provides increased dynamics and energy return to give patients more agility and enable high impact activities, it basically moves the pressure applied up and around into the hip and takes the pressure off the leg and ankle. Just like how a prosthetic does with an amputee while still leaving your foot attached.
I have to travel from Massachusetts to Gig Harbor Wa. for clinical evaluation and fitting process and then physical therapy regimen is in place to optimize the fit and training on how to walk properly utilizing the device for everyday use as well as physical activities, all of this training is based on my individual case. This program has helped many patients with conditions or injuries such as ankle fusions, fractures, tarsal coalitions, CMT, Club Feet, Stroke, MS, crush injuries, nerve damage, blast injuries, and a variety of other conditions. Those who have been provided the IDEO device are able to return to a better quality of life which often includes being more active with their families, in the community, returning to work, running and higher levels of physical activity.
If you would like to receive additional information or have questions, please feel free to email Ryan Blanck [email redacted] or Koreen Peterson [email redacted], call the Hanger Specialty Clinic at [phone redacted] or contact your Primary Care Manager. http://www.hangerclinic.com/bracing-support/adult-le/Pages/Limb-Salvage-ExoSym.aspx
Please donate to help me cover the costs that my insurance doesn’t. I will have two trips out to the West Coast, to Gig Harbor WA. The first is for three days, this is for my initial fitting and then one other a month later for the IDEO final fitting, physical therapy and training. This fundraiser will help me cover travel costs (airfare hotel and food) also new custom shoes that will be needed. I will be in two different sizes! This miracle brace will help me find an end to my chronic pain that I’ve lived with for 17 years. Not only would this brace restore my mobility, but it would save me from a below-the-knee amputation!
I will be blogging my rehabilitation here: Zimmersfusion Wordpress
Instagram Instagram
I and my family thank all whom choose to donate! I look foward to sharing my journey with you.
*I will update here and my blog on travel dates as everything is cemented.
I have struggled with debilitating chronic pain since 2001 after my left ankle was broken in many places when I was pregnant with my son. My son will be 18 and heading off to college next fall, time moves so fast! I had surgery to remove bone fragments and fix displaced fractures a year and a half later. It was this surgery that caused my CRPS. CRPS is a progressive nerve disorder.
Complex Regional Pain Syndrome, CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. I am type 2 intractable. Having this has made me extremely warry of any surgery. What is CRPS?
I went through years of pain treatments; injections, medications, nerve blocks, various braces/casts, also various plastic AFO’s. They couldn’t make me any promises surgically at this time. It finally got to the point where my life was slowly coming to a rolling stop I could no longer work on my feet. I gave up a career in health care I loved and went back to school
Jump ahead to July 29, 2014, I couldn’t walk a block without extreme pain and swelling. I would bike my canine best friend Dallas around for his runs. I could no longer hike, nor just walking on flat land for any lenght of time. The biked ending up with me giving up my extreme fear of surgery. I went off my bike landing full force on my left leg. This resulted in a rather large painful Tibial Plateau fracture along with a torn ACL and an IT Band. The ER took scans of L ankle 'we can't tell what is old and new." “Holy crap what happened… how do you walk?” then "That is fine you will not be walking on it for a long while" they aced it put on an air strap. I went through 10 weeks completely immobilized, another 8 weeks of limited physical therapy, do too the state of my ankle.
I could no longer hold off surgery on the beast, there was nothing left to heal. I had to have a Triple Arthrodesis, no if and or butts. My fantastic orthopedic surgeon Dr. Baker did warn that I could have a re-occurrence of the RSD/CRPS and worsening symptoms. Oh boy did it ever. My worst nightmares ended up coming to fruition. I had my first triple arthrodesis 2/20/15 this first one failed due to non-union of all three of my sites. My CRPS also complicated this I have less venous supply and nerve damage.
Surgery 1
I went back for my second fusion 9/18/15. With complications from my epidural pain catheter, I have been in a constant CRPS flare since. This fusion is never going to be able to hold due to malunion, skeletal deformity, nerve, tendon and muscle wasting a loss. I am 7 months out from surgery; I am still air casted and can only apply 40% my body weight to my L foot. My progress has stopped. Crutches are my best friend so is my trusty scooter.
Amputation and the IDEO were put on the table.
I have been off my feet since July 2014. I haven’t been without pain, well I don’t really remember when. I can no longer have any kind of surgical intervention other than a spinal cord stimulator for pain control and my choice of a below the knee amputation (BKA) or the IDEO. My team of doctors has been fighting beside me for months to have my insurance cover the IDEO. We finally got it approved.
CRPS flare
CRPS waxy skin, no arch.
Thankfully, my insurance is covering the full cost of my IDEO after a 5 month battle; an IDEO/ExoSym was first created by Prosthetist Ryan Blanck in 2009 for service members with limb salvage conditions as an alternative to amputation. Since its development over many service members and a growing number of civilians have received the device. The IDEO provides increased dynamics and energy return to give patients more agility and enable high impact activities, it basically moves the pressure applied up and around into the hip and takes the pressure off the leg and ankle. Just like how a prosthetic does with an amputee while still leaving your foot attached.
I have to travel from Massachusetts to Gig Harbor Wa. for clinical evaluation and fitting process and then physical therapy regimen is in place to optimize the fit and training on how to walk properly utilizing the device for everyday use as well as physical activities, all of this training is based on my individual case. This program has helped many patients with conditions or injuries such as ankle fusions, fractures, tarsal coalitions, CMT, Club Feet, Stroke, MS, crush injuries, nerve damage, blast injuries, and a variety of other conditions. Those who have been provided the IDEO device are able to return to a better quality of life which often includes being more active with their families, in the community, returning to work, running and higher levels of physical activity.
If you would like to receive additional information or have questions, please feel free to email Ryan Blanck [email redacted] or Koreen Peterson [email redacted], call the Hanger Specialty Clinic at [phone redacted] or contact your Primary Care Manager. http://www.hangerclinic.com/bracing-support/adult-le/Pages/Limb-Salvage-ExoSym.aspx
Please donate to help me cover the costs that my insurance doesn’t. I will have two trips out to the West Coast, to Gig Harbor WA. The first is for three days, this is for my initial fitting and then one other a month later for the IDEO final fitting, physical therapy and training. This fundraiser will help me cover travel costs (airfare hotel and food) also new custom shoes that will be needed. I will be in two different sizes! This miracle brace will help me find an end to my chronic pain that I’ve lived with for 17 years. Not only would this brace restore my mobility, but it would save me from a below-the-knee amputation!
I will be blogging my rehabilitation here: Zimmersfusion Wordpress
Instagram Instagram
I and my family thank all whom choose to donate! I look foward to sharing my journey with you.
*I will update here and my blog on travel dates as everything is cemented.
Organizer
Laura Frerichs
Organizer
Fitchburg, MA