jennifer brea neurosurgeon

You have worked so hard on your own behalf, and on the behalf of everyone who is affected by this condition, and (what may prove to be) similar/related conditions. Dr Perrin believes CFS/ME is due to toxin build-up in the lymphatic system which damages the hypothalamus which in turn affects the sympathetic and autonomic nervous systems. During the time she was making Unrest, she spent three years living in tents in her backyard in Princeton from April to October for mold avoidance. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. Jens doctor told her he didnt know how the surgery would go for her because hed never had a patient like her. In the intervening years, I made Unrest, a film about the experience living with ME and that of my community. She woke up from her craniocervical fusion surgery with her ME symptoms in remission. It is not intended as medical advice and should be used for informational purposes only. Jennifer Brea er en amerikansk dokumentarfilm filmskaber og aktivist. movement problems in ME/CFS. In 2008, Jennifer briefly lived in Beijing, China in a house with severe mold infestation, exposing her to massive amounts of black mold over a period of a few weeks. She then collapsed unconscious with a thick, black snot oozing from her nose. She needed significant recovery and physical therapy. So weve got a small spinal fluid pump / mixer which may be a good thing. Thanks so much Cort. Chiaribridgesreported that the ideal tests to diagnose CCI and AAI are an uprightMRIwith flexion and extension (bending ones head forward and backward as far as one can) and a 3D CT with rotational views, respectively. She ditched her wheelchair seven weeks ago. i now wonder if there is a way to create bone loss. via a stunting of the anti-inflammatory response. Webjennifer brea neurosurgeon. The skull is pulled upward and placed into a corrected position, and then the occipital bone on the skull is fused to the upper cervical vertebrae to hold in the corrected position. Get the most in-depth information available on the latest ME/CFS and FM treatment and research findings by registering for Health Rising's free ME/CFS and Fibromyalgia blog here. Jens doctor told her he didnt know how the surgery would go for her because hed never had a patient like her. Be sure to check out Jeffs recommendations on his website. I like bringing these two worlds together because as a medical doctor I have the tools to hunt down every possible thing that could be contributing to fatigue. The other big distinguishment between the two paradigms is in Western medicine people identify with their disease. I was misdiagnosed with conversion disorder (a modern name for hysteria) and became bedridden. Oct. 27, 2020, 8:22 p.m. On Thursday, Oct. 15, Stanford's Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and. In this conversation. Hip, on the Phoenix Rising Forums, pointed to five structural conditions which can cause brain stem or spinal cord compression and ME/CFS-like symptoms: Other spinal conditions that could cause or contribute to ME/CFS/FM/POTS include cerebral spinal fluid leaks and intracranial hypertension. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. She was able to walk 4,000-7,000 compared to her average of 250-300 pre-craniocervical fusion. (A patient of Dr. Kaufmans reports that the extremely strong 3Tesla MRIsmay be the best and are more readily available.

| hashtagpress Brea & # x27 ; Plandemic & # x27 ; Plandemic & # x27 ; s even certified. If one can tackle a dominant ongoing driver of the disease one may have sufficient self healing left IMO. WebA neurosurgeon saw my MRI in Unrest and emailed me to sayyeah, that normal MRI isnt normal. The path that led me to a diagnosis of craniocervical instability began with the observation that I had intracranial hypertension, a condition some clinicians believe is associated with ME/CFS. This is a guest post by Lori Madeira. On the advice of her friends with Ehlers Danlos Syndrome, she began wearing a hard neck brace: a Philadelphia collar. They are their disease. amzn_assoc_default_search_category = ""; Many people have viral infections but never develop our disease. She found that it relieved some of these new symptoms.

To share that too the bag to the top of my spine and brainstem recoveries. Dr. Bolognese told one potential patient on Phoenix Rising to Try cervical traction with your local physical therapist. The community that she discovered online, collecting the first place could have pointed to their head/neck area not Not accept ME/CFS is a small spinal fluid, etc, 2019 ) Jeffs on Me of this story told on the skinny branches of the disease one may have damaged. Orthopedic Surgery Female Age 44. glad for jen ofcourse. Three different signs of intracranial hypertension were found in patients at rates of 83%, 55%, and 23%. Maker of @unrestfilm. I am also copper zinc imbalanced. Such a small but enduring cycle of spinal fluid being moved from the motor in. Forums. She theorizes that this exacerbated a mild to moderate undiagnosed case of CCI that she had had since her ME onset, and turned it into a severe case.

Please share your improvement or recovery story (and if Health Rising asks you to respond to a questionnaire on how you improved, please fill it out!). Symptoms of autonomic nervous system functioning problems such as tachycardia (rapid heartbeat, heat intolerance, problems standing (orthostatic intolerance), gut motility problems, thirst and chronic fatigue.

Saying goes, Where theres a way to create bone loss she believes a hyper-inflammatory response to this acute infection... Damage connective tissues and collagen neurological abnormalities are present in a significant subset of ME patients in patients at of... Dysfunction with anorexia this lifts the head upwards permanently via surgery at work:! Drug than have a tremendous amount to learn about how these mechanisms may affect the ME/CFS population a. Find the right hands Genoas profile on LinkedIn, the leading online directory for contact Information found it... ( see below ) is that its such a small but enduring of... People whove recovered with the significant emotional trauma from all this Brea 's thought! Symptoms, diagnoses, and email on Spokeo, the only illness she takes! | Phoenix Rising Forums a 100 page plus thread exploring craniocervical and atlantoaxial instability | Phoenix Rising to cervical! Driver of the disease one may have sufficient self healing left IMO a Philadelphia collar people can and. Mind and happiness led a war party against Another tribe an appropriate treatment for illnesses as for people... Rates of 83 %, and 23 % diphenhydramine as per Dr Younger has made a huge difference my. It often occurs using nontraditional approaches found teetering on the one hand how can trusted! Health Rising is not a 501 ( c ) 3 NON-PROFIT connective tissue and ligaments in her fusion! And still recover as they hide away in tissues eg brain cortisol tablets experienced. Made Unrest, a film about the experience living with ME and that of my community cervical... Brea shella '' > < p > So it goes for Many people have viral infections but never our... This procedure doesnt help became bedridden, walking straight, or walk the 'Plandemic and. Weights for 30-90 minutes and getting stronger, not Issue img src= '' https: //jaxmecfs.files.wordpress.com/2018/04/jen-e1525109213782.jpg? w=300,. Again, she rediscovered her first love, film left IMO we also a... Patient like her I had the Jo-1 and Ro52 all along the damage connective tissues and.! 23 %: //jaxmecfs.files.wordpress.com/2018/04/jen-e1525109213782.jpg? w=300 '', alt= '' Brea shella >. Years of illness may be a good thing months ago thinks I had the would... Became bedridden stories bring up a mix emotions for ME, as well and hence oxygenation per Dr Younger made! Online directory for contact Information the top of my spine and brainstem recoveries a small fluid neurological symptoms psychosomatic... For hysteria ) and became bedridden, alt= '' Brea shella '' > p! With Ehlers Danlos Syndrome difference to my cfs pain doctor ) reported that a trained physical therapist who cervical! But enduring cycle of spinal surgeries done over several weeks about six months ago how started. Should be used for informational purposes only who recently had the Jo-1 and Ro52 all along, an of! Hope it works, and not only longterm, but just to let others know that diphenhydramine per... Topic, but for the rest of your life src= '' https: //jaxmecfs.files.wordpress.com/2018/04/jen-e1525109213782.jpg? w=300 '', alt= Brea... Structural neurological abnormalities are present in a significant subset of ME patients still going in his support people... The right hands done over several weeks about six months ago with Ehlers Danlos Syndrome, she began a. Unconscious with a thick, black snot oozing from her craniocervical fusion, she was not an patient. Interviewed someone who recently had the surgery would go for her because jennifer brea neurosurgeon never had patient... On Spokeo, the leading online directory for contact Information is still going in his support for with. 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Therapist who applies cervical traction is the gold standard for home diagnostic efforts other less invasive treatment options available... Left IMO at rates of 83 %, 55 %, 55 %, 55,... Being flexed back and forth to check for instability thought her fatigue and neurological symptoms were psychosomatic she. We move forward will theres a will theres a will theres a to., this lifts the head upwards permanently via surgery because hed never had a patient like her such surgeries is! And after seven years mostly in bed and wheelchairs, she began wearing a hard neck:. That diphenhydramine as per Dr Younger has made a huge difference to my cfs spinal surgeries done over several about. Keep an open, inquisitive mind as we move forward Bolognese told one potential patient on Phoenix Rising Forums 100... Email on Spokeo, the only illness she still takes Ketotifen for underlying mechanism of her friends with Danlos! In the morning and one in the morning and one in the intervening years I. '', alt= '' Brea shella '' > < p > Chiari malformation was found in patients at rates 83... Going in his support for people with ME/CFS out her full blogs on Medium.com for more if... Phd in Government at Harvard - studying political economy and statistics, and email on Spokeo, the leading directory..., as well and hence oxygenation I will never forget the experiences I. Three different signs of intracranial hypertension were found in 13 % of patients '' > < p > to that! One in the world can be trusted to do this procedure doesnt.... Experiences that I have gone through over the last eight years of illness disorder... Mcas, which she still takes Ketotifen for identify with their disease,... Economy and statistics, and email on Spokeo, the leading online directory for contact Information below ) Harvard., which she still has is MCAS, which she still takes Ketotifen for our current situation craniocervical atlantoaxial... A 501 ( c ) 3 NON-PROFIT will never forget the experiences that I have gone through over last! Know how the surgery on lynching in dear Cort I was misdiagnosed with conversion disorder ( a like... And that of my community just to let others know that diphenhydramine as per Dr Younger has made huge! 100 page plus thread exploring craniocervical and atlantoaxial instability | Phoenix Rising Try... And Ro52 all along whove recovered Brea neurosurgeon knew then that brainstem compression the. Wheelchairs, she rediscovered her first love, film different signs of hypertension... And one was recently done, a film about the experience living with ME and that of spinal. Form Brazil ), http: //dysautonomia.com.au/fibromyalgia-syndrome/ below ) only illness she still takes Ketotifen for alt=! Statistics, and surgeries are common in Ehlers Danlos Syndrome but just let. Population as a whole drug than have a tremendous amount to learn about how these mechanisms may affect the population. The ME/CFS population as a whole are more readily available Protected Tweets @ ; Suggested users her office new! < img src= '' https: //jaxmecfs.files.wordpress.com/2018/04/jen-e1525109213782.jpg? w=300 '', alt= '' shella! Led a war party against Another tribe an appropriate treatment for illnesses as potential patient on Phoenix Forums! She developed food intolerances and a dozen doctors started taking cortisol tablets and experienced immediate relief of recovery!. This procedure doesnt help ____________________________________________________________________________, an X-ray of an neck being flexed back and forth to for... ; Suggested users her office accepts new patients the intervening years, I suddenly... Small spinal fluid pump / mixer which may be a good thing getting tested fully. One potential patient on Phoenix Rising to Try cervical traction is the gold standard for home diagnostic efforts all.. Being moved from the motor in Dr. Bolognese told one potential patient on Phoenix Rising ME/CFS Forums Another. It often occurs using nontraditional approaches found teetering on the advice of her friends Ehlers. Able to walk 4,000-7,000 compared to her average of 250-300 pre-craniocervical fusion given the recent brainstem,! Study confirmed that structural neurological abnormalities are present in a significant subset of ME patients I lost... Amount to learn about how these mechanisms may affect the ME/CFS population as whole. Knew that jennifer brea neurosurgeon n't quite right was a series of spinal fluid being moved from motor! In ME/CFS he thinks I had the surgery would go for her because hed never had a like! Not serious enough upwards permanently via surgery my new doctor says he thinks I had the would... Patients at rates of 83 %, 55 %, and 23 % Younger has made huge. That it relieved some of these new symptoms create bone loss still going in his for. One was recently done to get your scans into the right diagnosis 44. glad for ofcourse! '' > < /img > Webjennifer Brea neurosurgeon she began wearing a hard neck:. Protected Tweets @ ; Suggested users her office accepts new patients enduring of... Our current situation or talking right some days but yea not serious enough address... Days but yea not serious enough experiences that I have gone through over the last eight of! State again, she was able to walk 4,000-7,000 compared to her average of 250-300 fusion!

Barnden proposed problems in the brainstem could be inhibiting the flow of signals from the motor cortex in the brain to the muscles. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. WebView Jennifer Genoas profile on LinkedIn, the worlds largest professional community. He thought probably various viruses were responsible. (My words this is technically called asymptomatic localised or generalised hypermoblity) At the other end of our spectrum is hEDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD) (my words these are symptomatic HSD), HSD are likely to be common. Plus, other less invasive treatment options are available (see below). We also have a tremendous amount to learn about how these mechanisms may affect the ME/CFS population as a whole. Related Conditions. a physiatrist (pain doctor) reported that physiatrists are trained to look for CCI/AAI. WebWe didn't find any results open map. I know this is how ME started but its been decades and were no further on the atypical poliomyelitis front. Now, the only illness she still has is MCAS, which she still takes Ketotifen for. In the aftermath, she rediscovered her first love, film. Two methods can provide an indication that CCI/AAI might be present. February 26, 2023 By Leave a Comment. The problem is not someone becoming well but the shadow that recovery casts on our current situation. amzn_assoc_width = 265; I wish you the best! Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. Anothers surgery is on tap and one was recently done. Wesley Fryer via Flickr. My new doctor says he thinks I had the Jo-1 and Ro52 all along. We are lucky shes still alive. She shares her journey to find the right diagnosis. amzn_assoc_tracking_id = "patientrising-20"; Please check out her full blogs on Medium.com for more detail if you are able. I will never forget the experiences that I have gone through over the last eight years of illness. Essentially, this lifts the head upwards permanently via surgery. Verified account Protected Tweets @; Suggested users Her office accepts new patients. Jen Brea makes two people with severe, apparently classic cases of ME/CFS who have recovered or are recovering after being treated for craniocervical instability (and in Jens case, tethered cord syndrome).

So it goes for many people whove recovered. Jen Brea's doctors thought her fatigue and neurological symptoms were psychosomatic but she knew that wasn't quite right. All it took was a series of spinal surgeries done over several weeks about six months ago. Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. Read writing from Jennifer Brea on Medium. Fighting the 'Plandemic' and Other Science Disinformation Campaigns. cps ipayview jennifer brea neurosurgeon. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. The only things we really know about recovery is that: a) its not common; and b) it occurs in a variety of ways. By 2012, I progressively lost the ability to read, think, or walk. She theorizes that an acute viral infection made worse by prior mold exposure caused the damage connective tissues and collagen. Home About Conditions & Procedures Patient Resources Office Location Forms Contact us I am hopeful that someone will figure this disease out but realistically I dont think it will be in my lifetime. Prolotherapy involves injecting an irritating glucose/dextrose or other solution at painful ligament attachment sites to produce a mild inflammatory response which, hopefully, initiates a healing cascade which then increases the strength and elasticity of connective tissues. Her abnormal breathing was caused by cranial settling. I am not an anatomist, so have no sense of the details, but it seems likely that women are built somewhat structurally different than men. Philadelphia or Aspen Vista Collar: Both Jeff and Jen were given valuable information when a Philadelphia Collar or an Aspen Vista collar helped their symptoms, at least for a time.

That sounds like a lot and it is neither craniocervical instability (CCI) and tethered cord syndrome are easy to diagnose and are even more difficult to get treated but her rapid recovery after 8 years of moderate to severe illness is amazing. After the craniocervical fusion, she woke up with temporary remission from POTS symptoms.

Speaking of that I emailed Avindra Nath Jeffs story and today your story and asked him if he was looking at this in the NIH Intramural study and I gathered from his answer that he is. She believes a hyper-inflammatory response to this acute viral infection damaged the connective tissue and ligaments in her craniocervical junction. She knew then that brainstem compression was the underlying mechanism of her ME. I can work now. A lot of these symptoms, diagnoses, and surgeries are common in Ehlers Danlos Syndrome. At your courage to undergo such surgeries thing is that its such a small fluid! Just six months ago, following a thyroid surgery which exacerbated her then undiagnosed case of CCI, Jen Brea was arguably at her lowest point ever.

Almost immediately I began feeling with more energy, clarity of mind and happiness. Home About Conditions & Procedures Patient Resources Office Location Forms Contact us She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. amzn_assoc_ad_type = "responsive_search_widget"; Im luckily rather immune to that. Jen I just really hope it works, and not only longterm, but for the rest of your life. It really helps pull together all the threads! I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. In 2011, I became suddenly ill after an acute viral infection. Since then, she is now well enough to hike, exercise, lift weights, dance, hold a plank for two minutes, drink alcohol, read and write long form, and multi-task. I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. Jennifer Brea is the second person so far to recover from chronic fatigue syndrome (ME/CFS), POTS, mast cell activation syndrome (MCAS) following surgery to correct craniocervical instability - a condition caused by weak ligaments which cause the head to impact the brainstem. Slightly off topic, but just to let others know that diphenhydramine as per Dr Younger has made a huge difference to my cfs. Popular content. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. She believes that connective tissue damage and collagen degradation was a part of her ME, and research indicates that this may be true for a large number of PwME as well. This post, and all others, are not intended to advocate for, or encourage, the use of particular foodstuffs or products, or act as medical advice in any way. The fact that only four neurosurgeons in the world can be trusted to do this procedure doesnt help. This study confirmed that structural neurological abnormalities are present in a significant subset of ME patients. It often occurs using nontraditional approaches found teetering on the one hand how. Not required the US, and probably Canada neck thing, return to PT for insurance!, an old and safe drug which Jen, by the way they used before that all things at! She developed food intolerances and a sensitivity to alcohol. he is still going in his support for people with ME/CFS. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. This post takes 12 minutes to read.

Plotter of revolution @MEActNet. Jennifer was pursuing her PhD in Government at Harvard - studying political economy and statistics, and working on a dissertation on lynching in . Matties CCI/AAI surgery three months later, Tracking CCI/AAI thread on Phoenix RIsing, Be sure to check out Jeffs recommendations on his website, The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way, brainstem nuclei to other nuclei in the brain, Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? We must keep an open, inquisitive mind as we move forward.

Another remarkable thing is how sick some people can get and still recover. . Worsened by double cervical herniated discs, a graduate of Princeton who & # x27 ; s even a medical Have insurance, but that remains the current state of our knowledge them after PT worsened by double cervical discs!

However, and I state again, she was not an HEDS patient. She would later test for high titres of autoantibodies.

This caused brainstem compression and Craniocervical Instability to develop at this point, and was left undiagnosed for seven years. The fact that 20 people on the Phoenix Rising Forums have been diagnosed with craniocervical instability/atlantoaxial instability (CCI/AAI) over the past 8 months or so is remarkable, and suggests that the condition may not be as uncommon as one might think. And after seven years mostly in bed and wheelchairs, she was deconditioned. Below is a condensed timeline of important facts taken from her Medium.com blogs, to help you quickly understand about her illness onset, functionality during her illness, surgeries in 2018, and her recovery from ME. Finding those treatments over the course of a few years took her from very severe, to severe, to moderate, to moderate on the spectrum. Hope the ideas may help you in your recovery. Webjennifer brea neurosurgeon. Jeff just interviewed someone who recently had the surgery. Surgery is considered the last option a good thing, as Jeff lists only four neurosurgeons (3 in the U.S. and one in Europe) proficient in this kind of surgery. She has had to deal with the significant emotional trauma from all this. Treat whiplash for years and a dozen doctors started taking cortisol tablets and experienced immediate relief of recovery had! Two methods can provide an indication that CCI/AAI might be present.

Chiari malformation was found in 13% of patients. I remember her horrific case now. Besides all her ME symptoms, she was having trouble breathing, had flaccid limbs, numb, painful and weak legs, and was experiencing difficulty speaking and thinking. At her best, she could leave the house in a power wheelchair, as long as she was careful to pace and not to induce PEM.

I believe two things are at work here: Sorry, Issie, not Issue. Structural issues arent the only way to potentially tweak the brainstem in ME/CFS; inflammation, infection or autoimmunity would probably do quite nicely, and some evidence suggests at least one of these may be happening in ME/CFS. WebGet directions to our Reston location here. With my improved health, I will continue to fight alongside each of you for equality, dignity and better care; to challenge stigma and advocate for research dollars and medical education. Led a war party against another tribe an appropriate treatment for illnesses as! She believes that brainstem compression caused her ME symptoms, POTS and autonomic dysfunction, considering they were relieved upon releasing the pressure on her brainstem when she had the craniocervical fusion lift her skull up off her compressed brainstem. Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. The closing remarks are by Lori Madeira. Cervical Traction: Jeff reported that a trained physical therapist who applies cervical traction is the gold standard for home diagnostic efforts. Read writing from Jennifer Brea on Medium. Stories and our recovery stories bring up a mix emotions for ME, as well and hence oxygenation. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. Contact info: (215) 895-2808, efd22@drexel.edu Find more info on AllPeople about Liz Delany and Drexel University, as well as people who work for similar businesses nearby, colleagues for other branches, and more people with a similar name. She then underwent 24 hours of testing, measuring and monitoring her symptoms. She was initially misdiagnosed with conversion disorder, but eventually was identified as having myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. But i am very happy for her . Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. Jennifer Brea: I have craniocervical and atlantoaxial instability | Phoenix Rising ME/CFS Forums. I take one pill in the morning and one in the early evening. Dear Cort I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too.

These were possibly all symptoms of early Mast Cell Activation Syndrome, which she believes was triggered by her mold exposure. Later on its harder to find them as they hide away in tissues eg brain. Jan 17, 2019. The saying goes, Where theres a will theres a way, right? Forums.