Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
Jeff Wood, in his 30s from California, has one of the greatest Lazarus-like life stories you will ever hear. Jeff’s experience is made even more remarkable by a health care system that denied he was even ill.
Jeff was so sick and disabled he spent years bed bound requiring care from his family, while physicians told him he was not really sick and that he had psychological problems.
But Jeff was very, very sick, and through his own tenacity and own research from his hospital bed, was able to determine the cause of his inability to be vertical, set up a meeting with a world renowned neurosurgeon, get a diagnosis over his phone, and a referral from that neurosurgeon to transfer Jeff to his hospital for surgery.
But the current hospital, deeply ego invested in their psychological diagnosis, refused to transfer Jeff for the surgery, while they continued to verbally and psychologically abuse and torment him.
I am amazed by Jeff’s journey to hell and back, but especially by his rational and grounded account of medical errors that can be traced back to when he was a toddler, and his determination to help other patients not have to endure the medical error and abuses he survived.
Jeff talks about how his story will blow people's mind - his tethered cord, leg and foot pain as a child, Jen Brea
Tethered cord and its relationship to craniocervical instability (CCI) and the 3 parts to our spinal cord, but Jeff's cord was still attached, but he had no idea except for leg and foot pain until he was 4 years old - diagnosed with 'anxiety'
Dr Petra Klinge - top tethered cord surgeon in the world - a lot of her patients also have CCI - 2 conditions often occur together
After Jeff's CCI surgery, he started to experience the same foot pain he had as a small child - 2nd surgery to free his cord - more symptoms went away
Jeff thinks if he had of been diagnosed properly as a 4 year old and had the tethered cord surgery, he would not have developed CCI as an adult and lost 4-5 years to severe illness
Jeff studied cognitive science - standard childhood - he is interested in the human mind - mutliple realities - how do we open our minds?
Working toward his Doctorate - but started to get sick with 'mild' ME (Myalgic Encephalomyelitis) in Graduate School (end of 2011) - had bad flu but didn't get better - only half the energy he used to have - shocking, didn't know what to think - 'I'll just push through and it will go away' - it didn't, the more he pushed, the sicker he got
Can't socialize, can't go to the gym - had to go part time to school - then ended up bed ridden June 26 2014.
How being severely ill impacted his relationship - Jeff's parents came to help take care of him - put fridge in his room - couldn't prepare meals, needed help bathing
Many tests and specialists but none could figure out his problem - Jeff would try to generate hypothesis to explain his symptoms - but the doctors would say he was healthy, that maybe he had anxiety - imply he was depressed or malingering or take advantage of medicine or seeking attention
After bad crash in 2014 Jeff started looking into ME - started seeing Dr David Kaufman
Relieved to find illness, ME, that matches his symptoms - but no known cure, and is life long - a death sentence, overwhelmingly sad
Dr Kaufman history of HIV physician - works with discriminated populations - had moved onto the puzzle of ME - a very compassionate doctor who understands some patients are harmed by health care system - same office as Dr Bela Chheda
First visit with Dr Kaufman - he was very curious - wanted chronology of symptoms, Kaufman was very prepared, very good listener - Jeff had to lie down during appointment because he walked but too embarrassed to use his wheelchair - Kaufman did not blink - diagnosed with POTS (postural orthostatic tachycardia syndrome) - autonomic system dysfunction when going from laying to standing, heart rate, blood pressure affected - took lots of blood for testing
Jeff learns for first time he has abnormalities in his blood in spit of many tests over previous years - Epstein Barr virus (EBV) - IgM antibodies for acute infection - IgG antibodies indicate persistent infection - Jeff recently infected with EBV - but Kaufman sees it a lot in ME patients - but when Jeff gets to wear neck collar, his titres disappear
Jeff explains how brain stem compression can affect the immune system, autonomic system - turns out both systems work together - cause downstream effects including energy and Kreb Cycle - Dr Ron Davis had found abnormalities in energy metabolism in ME - if you have a structural problem in your brain stem it can impact auto, immune and metabolism, all found in ME - endocrine problems too? Jeff thinks there would be
Also found Jeff's natural killer function low late 2014 - unsure why - discovered very low vasopressin causing frequent urination - also a symptom of tethered cord because it is a neurological problem - neurogenic bladder - Jeff basically had no vasopressin hormone - associates tethered cord with frequent urination as his body tried to create a new balance - ME structural problem triggers cascade of symptoms
Started antivirals for EBV, 2 standard meds - also started 2 meds for POTS and some symptom relief but would then be too active and crash / get sicker - likens meds to a bandaid, but had to 'pace' - budgeting energy - if Jeff made breakfast and showered he'd be sick for days, but if only made breakfast, he could shower the next day
ME, Myalgic Encephalomyelitis - Jeff explains a 'crash' from exertion, like showering or making breakfast - equates showering to running a marathon without any training and carrying 40 pounds - the more severe ME, the less a person can do - Jeff couldn't even shower on his own, he had to have people to wheel chair him to the shower chair and directly back to bed and that would cause a crash
Periods when Jeff is so sick he cannot speak, then did not have energy to write simple notes - crashing can be caused by light and sound - Jeff experienced this, he could not tolerate light, it would crash him for days - dark room, ear plugs, only showered every 2 weeks because it would make him so much sicker - very low quality of life
Jeff became more severe in 2015 after starting to see Kaufman and had some improvement but Jeff pushed himself and crashed into severe - emaciated, extremely pale - Jeff's Mom said he looked like he was dying of cancer - only when he was very severe did Jeff look ill, contributing to dismissal by doctors
Jeff's partner and parents knew he was ill even though doctors said Jeff was fine - Jeff's partner saw his daily decline - fortunate to have support of partner and family - Jeff's mental health had to fight to want to keep going, to live, to figure out what was going on - even though he knew the odds of getting better was slim - but he was going to try to defy the odds and had to psych himself up - Jeff would say to himself when feeling overwhelmed and hopeless, he'd focus on good things like his cat and his partner - profound grief and sadness from his situation, but not depressed because he wanted to do things
With ME, Jeff wanted to do things, be social, but too ill
When very severe, Jeff realized that only improvement came by being completely still, no talking, no movement - after few days slight improvement - realized he needed to do extreme pacing to get small gains - now understands that was taking pressure of his brainstem by being supine - allowing body to heal
One day Jeff's neck started to hurt - had root canal and some teeth removed, noticed he had to chew differently - then 'boom' his neck was very painful and getting headaches - felt like his head was sinking down between his shoulders - breathing difficulty when upright - felt like 'the opposite of winning the lottery twice' - very sad situation with ME and completely new problem - went to emergencvy room (ER) several times and treated horribly
Jeff reluctant to go to ER - had horrible, traumatizing issues when going with ME symptoms - Mast cell issues - assumed Jeff had psych issues and labeled him with anxiety - ER physically ejected him by security - so when neck problems developed he had to try 3 different ERs in one night but none would help - Jeff asked for cervical collar and that was helpful
Collar is helping, breathe easier - will tide him over until he can get more help - but not getting any where in California in spite of research being showed to specialists - journal articles about CCI and how they can cause every symptom Jeff had - took them to Stanford hospital and University of California, San Francisco (UCSF) hospital but doctors offended Jeff would self-diagnose, and dismissed him and journal articles
Jeff gets MRIs but they are read as 'normal' but Jeff knows from his research that he needed specific type of MRI so specialist can interpret - pivotal moment when he got admitted when he switched to 'weaker' collar, but soon collapsed, but sill couldn't sit up - something had fundamentally changed - waited 24 hours still could not sit up - perhaps 'stronger' collar weakened Jeff's already weakened muscles - Catch 22 - but Jeff so severe, the collar allowed some function
Jeff thinks CCI symptoms is extension of ME - but once Jeff had CCI surgery, his ME symptoms lifted - tethered cord since birth, pulls on brain stem, related to EDS
How does viral infection fit into this puzzle? 2 ways: virus can degrade collagen / ligaments - if you already have EDS, even more vulnerable to viral degradation of collagen - 2nd way is already have structural problem impacting immune system, then a viral onset may cause CCI / ME.
Admitted to local hospital, they were hostile to him always, that didn't change - Kaufman and family advocated to get Jeff admitted - they did MRI but not the right one to detect CCI and no CCI experts in California - but Jeff knew he needed to get to a hospital with CCI neurosurgeons - but this hospital treated Jeff as malingerer - finally a neurosurgeon coerced to see Jeff, but surgeon lied about EDS and CCI knowledge - arrogance factor
"I was very traumatized" - Jeff knew the only way to get through was to fight - hospital cruel and hostile to him, causing trauma - systemic medical abuse - iatrogenic harm
3 weeks flat on back, head down, feet up in hospital - transferred to world renowned hospital that considered very, very good - abuse intensified at new hospital
Nurses generally very kind - doctors were abusive - they gave him cerebral spinal fluid (CSF) surgery in case he had a leak - when that didn't work, they became more hostile - told he needs to accept there is nothing wrong with him - wasting our time - abuse by residents, physical therapists in spite of Jeff vomiting - but 2 internists validated Jeff's symptoms but they were powerless - others would berate him - Jeff wanted to be transferred to east coast to see CCI doctors, but they refused - they tried to transfer Jeff to a nursing home
Jeff recounts laying in hospital bed having a consult with east coast surgeon via skype - Jeff gets diagnosed with CCI via video conference by looking at images - but hospital refused to transfer Jeff to east coast - so forced Jeff to endure abuse and torture and threat of financial ruin - these same neurosurgeons at same hospital also did same thing to a female with CCI - Jeff experienced new level of abuse, mistreatment - expresses empathy for others experiencing same
Jeff's family helps get insurance coverage, but it took months to change health insurer so he could to out of state for care - had to hire attorney to prevent hospital from shipping Jeff to nursing home - his lawyer tells him that he must have a family member with him at the hospital 24 hours a day so the hospital doesn't transfer him - fortunately no homes would accept him - treatment from hospital staff much worse when Jeff's family not in room
Contrasting health care experiences with something common and simple like broken arm to treatment when having complex illness
Hostile hospital runs more tests and do find CCI and put Jeff in the halo he'd been asking for since he was admitted - Jeff's explains screws put into his skull to hold head in place - used until he got surgery
First week of halo was difficult but Jeff adjusted - but gave him freedom from bed bound - he could stand up! "Felt like freedom" - Jeff's legs like toothpicks because of atrophy
Waiting for surgery with halo - then had surgery Jan 31 2018 - drilled holes into Jeff's skull and first and 2nd vertebrae and implanted plate to stabilize neck / head - 7.5 hours of surgery - had lots of pain meds coming out of surgery - but 'a hiccup' compared to years of severe ME - no more POTS, post exertional malaise - viral and urination normalized - light and sound sensitivity and brain fog disappeared - but hard to have hope but slowly accept that surgery helped ME
Jeff first person to link CCI and ME - wants to make others aware - Phoenix Rising forum to share info for ME patients
Dr Peter Rowe paper 3 people have ME but found to have CCI and surgery cured their ME - up to 10 people with CCI diagnosis, including Jen Brea - more people getting tested and treated - Unrest documentary about ME made by Jen Brea - both are sharing their CCI stories
Dr Chhedda works same office as Dr Kaufman - Jeff originally took CCI article to Kaufman - Jeff is 'patient zero' - Kaufman believed Jeff and wants to solve problem and help patient - Centre for Complex Diseases
Jeff decides to tell his story publicly - feels he 'had to' tell people - when patients come together we can pressure the system to act quickly
Jeff's website and twitter account - will build Facebook page - wanting to partner with MDs and organizations to incorporate CCI into diagnosing ME - want to shout from roof tops so this knowledge can be intergrated into ME care
As Jeff was repeatedly mistreated, he became angry and that is driving him toward patient advocacy - Jeff thinks he will be 100% recovered - amazed by his progress - had accepted he would never get better - hard to believe he's not living like that any more
Mast cell problems and POTS disappeared after surgery - can go to gym, go for a run, be around his cats
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