Help Kim Survive Spinal Surgery
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For those of you that know Kim, she has had a variety of physical and medical issues that she has had to go through. In the last year alone she has had two surgeries and is requiring two more. Kim was diagnosed in 2016 with Hypermobile Ehlers Danlos Syndrome, a connective tissue disorder that has greatly impacted her quality of life.
The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyper extensibility (skin that can be stretched further than normal), and tissue fragility. Some of the symptoms relating to joints include joint hypermobility include loose/unstable joints which are prone to frequent dislocations and/or subluxations, joint pain, hyper extensible joints (they move beyond the joint’s normal range) and early onset of osteoarthritis. Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type). (https://www.ehlers-danlos.com/what-is-eds/)
Since an incident in October 2018 involving a nonverbal high school student with autism grabbing Kim soon after she started working at the NYC Department of Education as an occupational therapist, she has been out on workers compensation, has required 2 cortisone injections in each wrist, a PRP (platelet-rich plasma) injection in her right (dominant wrist) and in July, 2019 she had surgery to repair the triangular fibrocartilage complex (TFCC) and tighten the capsule of her wrist to decrease her hypermobility.
Since being injured, Kim’s overall pain level has increased significantly and she tried having treatments through a pain management doctor which did not show much improvement and led to increased neck pain and headaches, which led her to be referred to several neurosurgeons. Eventually, she found Dr. Henderson in Maryland who is one of 5 neurosurgeons in the world that specially treats Ehlers Danlos patients and was diagnosed with Craniocervical instability and Atlanto-axial instability. Basically the ligaments that hold her head onto her spine are so lax that she has been experiencing neurological symptoms affecting her vision, brain fog, clumsiness, headaches, pain, etc.
On a daily basis, pain and fatigue impact Kim’s quality of life. She has been going to see many doctors to try to find answers and treatments to help and is currently in physical therapy for three different conditions. She has been diagnosed with a number of conditions including Ehlers Danlos Syndrome- hypermobile type, Mast Cell Activation Disorder, Dysautonomia, and Irritable Bowel Syndrome.
Her pain management doctor, Dr. Norman Marcus suspected that she may have craniocervical instability and referred her to several neurosurgeons. The first neurosurgeon saw vertebral disc herniations in her lower cervical spine and wanted to fuse that area to stop the pain, but Kim felt the pain in her upper cervical spine and base of the skull and didn’t rush into surgery. She tried an epidural injection in the lower cervical spine, which caused more pain and did not help her.
Dr. Marcus referred her to Dr. Fraser Henderson in Maryland, who in July 2019, confirmed her craniocervical and atlantoaxial instability through many diagnostic tests including an upright flexion/extension MRI, lateral flexion X-rays, CTs, DMX (dynamic motion X-rays) and tried many conservative non-operative methods to try to help her without surgery. At this point, none of the conservative treatments have helped and Kim has experienced new symptoms and continues to decline in health both physically and mentally.
Kim has scheduled surgery with Dr. Henderson to fuse the Occiput (base of her skull) to C2 for November 19, 2019. This is a very serious surgery that will require her to stay in the hospital for an average of three days and the doctor requires a 20% down payment of the cost of the surgery which equals $8,803.20. The total cost may be more than anticipated as she will be liable to pay for what insurance doesn’t cover and be balance-billed, which the office said is common. Along with staying at a hotel for 10-14 days in Maryland, the costs to receive treatments have been more than anticipated.
The doctor is stating Kim will never be able to do many of the activities she has loved, like playing volleyball, any contact sports or activities and flying on the trapeze, and will even have to limit the amount of time being in a car for the rest of her life.
At this time, Kim has been fighting to keep her position as an occupational therapist available and not have to be forced to resign so when she is physically able to return to work she can help kids achieve their goals.
Since being injured at work she has been struggling physically, mentally and financially and depleted a lot of her life savings trying to find the right treatment. She hopes to return to work and lead a productive life again. If you can help at all, we would be so grateful.
The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyper extensibility (skin that can be stretched further than normal), and tissue fragility. Some of the symptoms relating to joints include joint hypermobility include loose/unstable joints which are prone to frequent dislocations and/or subluxations, joint pain, hyper extensible joints (they move beyond the joint’s normal range) and early onset of osteoarthritis. Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type). (https://www.ehlers-danlos.com/what-is-eds/)
Since an incident in October 2018 involving a nonverbal high school student with autism grabbing Kim soon after she started working at the NYC Department of Education as an occupational therapist, she has been out on workers compensation, has required 2 cortisone injections in each wrist, a PRP (platelet-rich plasma) injection in her right (dominant wrist) and in July, 2019 she had surgery to repair the triangular fibrocartilage complex (TFCC) and tighten the capsule of her wrist to decrease her hypermobility.
Since being injured, Kim’s overall pain level has increased significantly and she tried having treatments through a pain management doctor which did not show much improvement and led to increased neck pain and headaches, which led her to be referred to several neurosurgeons. Eventually, she found Dr. Henderson in Maryland who is one of 5 neurosurgeons in the world that specially treats Ehlers Danlos patients and was diagnosed with Craniocervical instability and Atlanto-axial instability. Basically the ligaments that hold her head onto her spine are so lax that she has been experiencing neurological symptoms affecting her vision, brain fog, clumsiness, headaches, pain, etc.
On a daily basis, pain and fatigue impact Kim’s quality of life. She has been going to see many doctors to try to find answers and treatments to help and is currently in physical therapy for three different conditions. She has been diagnosed with a number of conditions including Ehlers Danlos Syndrome- hypermobile type, Mast Cell Activation Disorder, Dysautonomia, and Irritable Bowel Syndrome.
Her pain management doctor, Dr. Norman Marcus suspected that she may have craniocervical instability and referred her to several neurosurgeons. The first neurosurgeon saw vertebral disc herniations in her lower cervical spine and wanted to fuse that area to stop the pain, but Kim felt the pain in her upper cervical spine and base of the skull and didn’t rush into surgery. She tried an epidural injection in the lower cervical spine, which caused more pain and did not help her.
Dr. Marcus referred her to Dr. Fraser Henderson in Maryland, who in July 2019, confirmed her craniocervical and atlantoaxial instability through many diagnostic tests including an upright flexion/extension MRI, lateral flexion X-rays, CTs, DMX (dynamic motion X-rays) and tried many conservative non-operative methods to try to help her without surgery. At this point, none of the conservative treatments have helped and Kim has experienced new symptoms and continues to decline in health both physically and mentally.
Kim has scheduled surgery with Dr. Henderson to fuse the Occiput (base of her skull) to C2 for November 19, 2019. This is a very serious surgery that will require her to stay in the hospital for an average of three days and the doctor requires a 20% down payment of the cost of the surgery which equals $8,803.20. The total cost may be more than anticipated as she will be liable to pay for what insurance doesn’t cover and be balance-billed, which the office said is common. Along with staying at a hotel for 10-14 days in Maryland, the costs to receive treatments have been more than anticipated.
The doctor is stating Kim will never be able to do many of the activities she has loved, like playing volleyball, any contact sports or activities and flying on the trapeze, and will even have to limit the amount of time being in a car for the rest of her life.
At this time, Kim has been fighting to keep her position as an occupational therapist available and not have to be forced to resign so when she is physically able to return to work she can help kids achieve their goals.
Since being injured at work she has been struggling physically, mentally and financially and depleted a lot of her life savings trying to find the right treatment. She hopes to return to work and lead a productive life again. If you can help at all, we would be so grateful.
Organizer
Kim Joz
Organizer
Long Beach, NY