We've got your back! Help Emily get spinal care!
Hello everyone!
This fundraiser is to help Emily Johnson get serious neurosurgery care costs and severe microclot treatment. Her work in journalism, medical research, social media, public relations and editing was cut short due to lack of care. She has had a few great work opportunities offered to her, but without this care she can't get to a better baseline to sustain full-time or part-time work. She is now 33 years old and finally able to access care for many long-standing health issues, but she needs our help to afford it!
While Medicare pays 80 percent of Emily’s health insurance covered costs, Medicaid only covers the remaining 20 percent
IF that care is in the same state Emily lives in. Unfortunately, surgeons and hematologists in the states Emily has resided have not had the expertise or willingness to properly assess, diagnose and treat her. Emily’s severe microclot care is almost entirely out-of-pocket.
The plan:
Emily has known for 6 years that she likely had
tethered cord syndrome, left undiagnosed and untreated since birth. Thanks to the help of few loved ones who helped her get there, she was finally able to establish care with one of the few US neurosurgeons in tethered cord,
Dr Klinge at Brown University in Providence, Rhode Island. Dr Klinge is the global tethered cord expert. She showed Emily her tethered cord was easily visible on MRI, but other doctors missed it.
Due to the pressure from
a lumbar herniationcaused by the untreated tethered cord syndrome, Dr. Klinge decided that Emily is unlikely to find benefit from
only a tethered cord release. Emily needs a joint tethered cord release from Dr. Klinge and lumbar discectomy from colleague Dr. Sullivan.
After months of recovery and rest, Emily will follow up with
New York neurosurgeon Dr Bolognese, who is assessing her craniocervical spinal damage. So far, Emily has been diagnosed with multiple herniated cervical discs causing cervical stenosis, bone spurs, nerve damage in her neck, degenerative disc disease and multiple craniocervical instability (CCI research and info
here and
here) diagnoses.
Dr. Klinge will reassess her upper spinal symptoms after the lower spinal surgeries, and then Dr. Bolognese will do whatever craniocervical spinal surgeries he deems necessary.
Should this occur, we will increase the fundraising goal for one or more neurosurgeries with Dr. Bolognese, with updated care plan details!
As Emily can’t sit upright long enough for a flight, she and loved ones will drive back and forth from the East Coast to get care.
We have 4 tiers of fundraising goals:
1) Medical care under the two neurosurgeons treating Emily for tethered cord syndrome and lumbar herniation:
- $1,200 to reimburse a 6-day medical trip to Dr Klinge in July 2023, that included: hospital costs, imaging costs, clinic costs, lodging, travel costs and food
- $20,000 for a 12-14 day medical trip to Drs. Klinge and Sullivan in November 2023, which will include: an estimated $12,000 after Medicare surgery cost, an estimated $5-$6k for hospital and clinic visits including a wound check 7 days after surgery, and $2k-$3k in lodging and food
2) Cost unknown at this time. Medical care under Dr. Bolognese for the spinal neck damage Emily is suffering from, which will hopefully be reassessed and announced sometime between December and March.
3) Up to
$2,000 - In additional to the four spinal issues presenting clotting risks, Emily experienced MCAS-induced
Vaccine-Induced Immune Thrombotic Thrombocytopenia (VITT),
MCAS-induced immunothrombosis , a clotting disorder called
Antiphospholipid Syndrome , a
pulmonary embolism , and
severe microclotslikely
accrued from MECFS and worsened by Covid vaccines and a Covid infection which made Emily develop Long Covid.
More on Covid causing severe microclots here. More on microclots below.
4) $300-$1,500 for oxygen therapy, hyperbaric or a home oxygen concentrator. Hyperbaric oxygen therapy out of the home is covered by Medicare, a home oxygen concentrator is not. $300 would cover cheap a small oxygen concentrator, $1,500 would cover the recommended 10 liter oxygen concentrators POTS, MECFS and Long Covid patients have used for decades to alleviate issues creating oxidative stress. According to 10 years of Emily's CO2 levels in her bloodwork, she is
likely experiencing hypocapnia like many patients. Her brain blood and oxygen rate drop an average of 20 percent lower than normal while sitting or standing (more on that
here and
here). H
ypocapnia on top plus these spinal issues inflaming her brainstem means her body needs extra support to distribute oxygen properly. The problem is not that she's not getting enough oxygen, the problem is that oxygen isn't getting where it needs to be properly.
Severe microclot info:
After 1.5 years of taking Xarelto after she had a pulmonary embolism, Emily was still found to have severe microclots rating 3.5 out of 4. Most people have Level 1 or 2 microclots. Without treating the severe microclots to bring them to a safer Level 2, Emily could have a stroke, heart attack, DVT or a second pulmonary embolism which could kill her.
This has required out-of-pocket specialty Triple Anticoagulant Therapy from a remote Long Covid clinic. Emily has paid $1,300 so far for an initial microclot lab and appointment, 4 months of follow-up care so far, a second microclot lab checking her levels, and medication copays and out-of-pocket supplements. Emily's now at Level 2.5 to 3, so the treatment is working but she needs more time. She will need more labs plus another microclot lab level check in October.
Microclots grading stages:
Evidence of stage 3.5 microclots in Emily found in June 2023:
We would appreciate it so much if you could help Emily pay for these expensive and life-saving surgeries and treatment. Emily is on Social Security Disability Income but given that she was forced to stop working at 27 due to these conditions and work inaccessibility, her SSDI isn't very much. The majority of Emily’s SSDI goes to home health and prescription copays, out-of-pocket supplements and care, and medical equipment and garments recommended by doctors. The rest of her SSDI covers her phone and expensive allergy-free groceries, as SNAP food stamp benefits only provide $20 a month. She lives with family for care assistance, transit, and free housing so she can afford the care she has received so far.
Thank you so much for your time and support!It took Emily months to help create this fundraiser due to severe neuroinflammation, she has had a very rough recent few years with these conditions increasing strain on oxygen and blood flow, her autonomic and muscle and nervous systems, her entire body at this point.
The best way to support Emily if you can’t donate is to wear a high-quality mask like an N95 mask, get vaccinated if you can, use viral air ventilation and purification in your homes and schools and businesses, avoid crowded public gatherings as much as possible, open windows when gathering in private, continue testing for Covid and other viruses, and stay home when sick.
Not only does this protect people like Emily from dying or becoming more disabled and having to potentially repeat these expensive surgeries and treatments as a result, but it protects you from having to do the same. 1 in 10 of Emily’s surgeon’s patients doesn’t have a connective tissue disorder at all, they just have immune damage from viruses eating away the connective tissue in their spine and organs requiring surgeries. This could happen to anyone, so we all should be cautious and take care of each other! Like the movie Jerry Maguire says:
“Help me help you.”
More info on diagnoses:
Emily has tethered cord syndrome that has been neglected by medical providers since birth, which progressively worsened over decades to cause scoliosis (diagnosed since age 12 but untreated), a lumbar herniation (suspected since age 26, diagnosed age 29 but left surgically unfixed), and multiple herniated cervical discs causing cervical stenosis, bone spurs, nerve damage in her neck and multiple craniocervical instability diagnoses (suspected since age 25, first diagnosed ages 28 and 29, surgically unfixed and left to worsen).
In brief, how tethered cord syndrome is presenting in Emily is that her filum is too thick and has attached itself to her sacral spine, causing tremendous neuroinflammation that has progressively destabilized every region of her spine. Tethered cord can be caught and fixed as early as two to four months old. When not caught, tethered cord worsens late in childhood and before/during puberty (which is an immune event), which is why surgeons recommend surgically fixing it before, during or after puberty to avoid escalating damage permanent by adulthood.
These spinal issues developed because Emily was born with hypermobile Ehlers Danlos Syndrome (hEDS), a connective tissue disorder that she was finally diagnosed with in 2017 that makes her body vulnerable. The only common type of EDS is hEDS, at
an updated population prevalence of 1 in 500. It's the only EDS type clinically diagnosed as it lacks a known genetic indicator. Mayo Rochester diagnosed Emily with hEDS, and an Atlanta-area biogeneticist specializing in EDS and Mitochondrial Diseases and Dysfunctions confirmed Emily's hEDS diagnosis.
EDS causes
Postural Orthostatic Tachycardia Syndrome (POTS) and
Mast Cell Activation Syndrome (MCAS), which have been severe for Emily since her childhood and diagnosed respectively at ages 24 and 27 but weren’t properly treated until age 29. Emily has
multiple types of POTS, with Secondary, Neuropathic and Hypovolemic since a young child and then Hyperadrenergic at age 22 after an Epstein Barr Virus infection. Her MCAS increasingly became more severe due to
various infections and other triggers, and nearly killed her multiple times when left untreated until 29. MCAS played a pivotal role in damaging Emily's spine and organs.
MCAS was estimated at 1 in 6 people before Covid and is even more common since the Covid pandemic began.
She also developed
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(MECFS) as a young child and then
Mitochondrial Disease/Dysfunction as a young adult, two developmental genetic disabilities brought on by multiple immune events (including but not limited to viral infections and viral persistence).
She also finally found a neurologist who assessed and diagnosed her with dystonia, a neuromuscular/movement disorder similar to MS and Parkinson's. All three present in EDS, but the
majority of people with EDS are estimated to have dystonia. Having a neuromuscular disorder is very difficult with spinal damage.
This cluster of disabilities and many comorbidities Emily also has are permanent and have caused significant damage. Immune events flare mast cells which cause connective tissue damage throughout the body, which is particularly devastating in people with EDS and other connective tissue disorders.
Some doctors have refused care for Emily just because she has EDS, and this diagnostic discrimination interrupted and prevented critical care over the years. Other doctors suggested Emily was faking having these symptoms and conditions, despite specialist diagnoses and even confirming diagnoses from two or three or four other specialists. Also, despite fantastic mental health providers affirming these were biophysical issues and that Emily wasn’t faking seizures, collapses, blackouts, vomiting and other issues. Some doctors forced her to take psych medications that worsened these conditions significantly due to prescription interactions and condition interactions.
She was even forced into a psych ward when she was unable to walk and experiencing severe symptoms, where she was abused severely and denied medical care. A friend had to discharge her and take her to the ER again. This
“clinician associated trauma” EDS patients endure is sadly common, and this clinical damage setback Emily’s care and endangered her life multiple times for years.
As a result of these spinal issues, Emily had developed dozens of neuromuscular, seizure, neurological and other diagnoses limiting her ability to work, continue a higher education, drive, exercise, run, walk or sit upright for very long, and even daily activities like eating meals, showering and household chores. Emily has had to rest at home in bed for most of the day, every day for 6 years. She has been in Palliative Care since age 29.
Even with neurosurgeries, Emily will have lingering permanent damage because she wasn’t taken seriously by medical providers, school personnel and other adults who didn’t get her the care she needed as a child, teen or young adult. Emily may need to repeat these surgeries throughout her life. She needs all of the support she can get now. Left untreated, these issues could kill Emily. She is very grateful for the support and care she has received so far that kept her alive and able to help others with these conditions!
More about Emily:
Emily often educates doctors, researchers and government agencies on these conditions, given her background in medical research and medical journalism plus her patient expertise. She's been sourced by peers in these fields as an expert. She has been consulted by national and local writers and journalists for edits on disability and chronic illness stories, scientific and medical misinformation, disability editing style guides and disability culture guidelines, accessible disability design issues and more.
Earlier this year, Emily's service animal passed away after getting Covid following another infection. It has been a very hard year for her, but that hasn't stopped her from helping others.
Emily has fundraised care costs, housing, food and other expenses for countless disabled and chronically ill people for several years on Disability Twitter, Instagram, Facebook and Mastadon. She is a moderator of Disabled Social on Mastadon, a social media server by disabled people for disabled people. She helps with many medical research projects and consults with patients who suspect or are diagnosed with these conditions (some of whom are directed to Emily by doctors, as they say Emily knows so much at this point that she basically has a medical degree). Emily advocates for funding for more research and government approved treatments on a weekly if not daily basis, working with patients, providers and researchers.
Everyone deserves a good quality of life!
Updates (3)
28 April 2024by Jess Smolinski, Organiser
Update from Emily!
Wanted to share what’s been going on!
The great news is that Drs Klinge and Svokos at Rhode Island Hospital were able to make Iowa Medicaid cover all costs after Medicare, leaving me with only a small pharmacy bill just over $5!
Dr Klinge pushed because due to neck damage she saw on imaging in June and November, she said she thought I needed neck surgery and should see Dr Paolo Bolognese to fully assess all neck/brain issues and get care. Money saved from the first two surgical estimates is going to that care.
My brother Nick will be going to New York with me for a week of invasive testing done by Dr Paolo Bolognese at the EDS Chiari Center at Mount Sinai South Nassau, and his colleagues Drs Klein (neuropsych), Stein (neurologist) and Kadkade (ENT). Unlike my local providers, they are knowledgeable in EDS, MCAS, MECFS and POTS which is a big benefit and could potentially guide local care.
In addition to known cervical damage causing Craniocervical Instability, Dr Bolognese found evidence of Empty Sella Syndrome and developing Chiari Malformation, which both fall under Intracranial Hypertension and possible cerebral spinal fluid leak. He will investigate these plus Eagle’s Syndrome/STING, and anything else updated imaging, tests and symptoms find of clinical significance.
I’ve already been told I’m a surgical candidate due to severity of symptoms and apparent damage. Symptoms have unfortunately gotten worse, which is what we suspected would happen as these are progressive issues left unfixed. If the invasive tests show I need one or more surgeries, I will have to leave New York to wait for insurance to authorize them, then return to New York for surgical care.
Going back and forth is costly, and I’m told the New York specialists do not take out-of-state Medicaid still so the 20% cost specialist, anesthesia, hospital etc fees will stack up quickly.
Mercy Cedar Rapids Neurosurgery denied reviewing my case again as “too complex” and while University of Iowa Neurosurgery has agreed to review my case and see me in an appointment, there’s no guarantee of further tests or surgical help (we don’t even know if they have the necessary knowledge or equipment to treat me). So we have proceed with the New York care team as waiting without care while symptoms worsen is no longer an option.
I have had to pause some physical therapy and limit what I do due to these worsening neck/brain symptoms, but so far the healing from my November surgeries has still been going well! My physical therapists say I’m doing as best as my situation allows right now, and are pleased with my ability to walk further, cook short meals and do laundry. My body is slow to heal as per EDS but my incisions look good and I haven’t retethered (knock on wood).
Thank you for your donations, prayers, good thoughts and help getting this care! My Palliative doctor and PCP are encouraged by this progress in healing and following the care plan. Please continue to share this fundraiser as I will need more donations to cover travel and medical costs! Thank you and wishing you all well. Emily
