We have had to deal with mountains of misinformation over the past 30 years, with a long line of false hopes, quack treatments and cures. long story version coming soon. For me, toxin buildup in the central nervous system certainly makes sense. She knew her PEM was gone immediately after the CCI/AAI surgery. Its wonderful work you are doing, Cort! Thanks Esther, a blog on Dr. Rowes reports on spinal stenosis is coming up. I doubt so. This whole bloody process has shown me how much medicine is just belief. Jennifer Brea, Counselor, Lyndhurst, NJ, 07071, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. I know she was using a wchair but that was because it kept her HR down from the POTS, not because her legs were so weak & wasted that she could no longer walk! So, its a matter of reducing the amount of nickel. She started filming herself and the community that she discovered online, collecting the first footage of what . This illness is so confusing. I found them after PT worsened by double cervical herniated discs, a few years ago. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. It has helped a lot with my pain and function, though not a cure. I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. Good luck on your ongoing search. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. 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. So it goes for many people whove recovered. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. Brea, Jennifer (May 20, 2019). She has been diagnosed with hEDS. I wonder if anyone looked at the thyroid tissue for viruses. To his surprise he met the criteria. The collars do not always improve symptoms, however. I know this is how ME started but its been decades and were no further on the atypical poliomyelitis front. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. I do have all the other problems like chemical sensativitieson and on and on with all the other stuff. Jennifer Brea is a filmmaker and activist. Some people with CCI also benefit from home neck traction devices. Hence why its one of those you dont want to miss complications of rheumatoid arthritis, or dont want to miss for any reason. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. These symptoms may include allergic-like symptoms (skin itching, flushing, hives, or anaphylaxis); gastrointestinal symptoms such as bloating, abdominal pain, diarrhea and/or constipation (often diagnosed as irritable bowel syndrome), heartburn, reflux, and difficulty swallowing; connective tissue symptoms such as hypermobile joints and scoliosis (often diagnosed as Ehlers-Danlos syndrome, hypermobile type); heart symptoms such as a racing or pounding heartbeat or blood pressure swings sometimes with fainting (frequently diagnosed as postural orthostatic tachycardia syndrome (POTS); as well as behavioral problems. Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. This is yet another area where Jen Brea and ME action have made such a difference: theyve provided a locus for people to rally around. I am absolutely thrilled to hear such wonderful news! That was probably due to improving the flow of pooled blood in the legs to the hart. I directed the Sundance documentary UNREST and co-founded #MEAction. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) The rest is speculation. Jeff and Jen Brea are leading examples. My bedsheets were brown in a week with toxins..still are. I had at some point absolutely no clue how to do it. It makes me unbalanced as there is so much to relearn and few usable time and energy. If you have a diagnosis of ME or CFS, meet the Canadian Consensus (CCC) or International Consensus (ICC) criteria, and have already been assessed for a mechanical/structural craniocervical or spinal problem by a neurosurgeon, was the result positive or negative? Thanks Cort, for reporting on this and other stories of recovery. [-] jenniferbrea 2 points 11 months ago* Mestinon helped me a lot. I am so happy for Jen Brea and I hope that she extracts every ounce of joy out of her newfound health and second chance at life. It could be argued there has been insufficient research to build on Ramsey and Dowsetts hypothesis of ME being atypical polymyelitis. Talk about a head trip! It was a long road, but I am cured. Im good on interpreting what she says and linking tiny difference in how it feels with what she says about how things are connected. kryptopyroluria Who knows what will happen if the nanoneedle provides a diagnostic test? Im constantly disappointed in my colleagues in their inability to rule out and hunt down all possibilitiesand find something that could be treated and healed. Sometimes Im winning, sometimes I definitely arent. It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. Can you make a correction to your article? It began in 2017. First of all, Im super happy about Jennifer Breas recovery and for new directions for research to go in that this brings about. I wish you the best! Parasym Plus is a supplement that I take. The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. And right around the time that I got the sickest, I experienced a neck injury from a hair salon wash basin (they had me in it for 20 minutes and my neck was killing me afterwards and almost immediately my health took a turn). 25 records for Jennifer Brea. Keep getting better, advocating, and now enjoying yourself! In short: spinal stenosis can potentially (help) disrupt blood and oxygen flow to the brain, cause inflammation of the main spinal nerves leading to a rigid posture and tense muscles wasting energy and more IMO. . I found LND problematic but much prefer the dextromethorphan . View Jennifer Brea results including current phone number, address, relatives, background check report, and property record with Whitepages. Sounds like a case of misdiagnosis to me! Its been used to treat whiplash for years and has been used in EDS but is not well studied. I remembered Jennifer Brea recovered from CFS/ME after spinal surgery, so maybe the surgery helped toxins to drain away from Jennifers spine, thus leading to recovery from CFS/ME? In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. I sleep much more better, not perfect, but fine most of the nights. I have mild CFS, I work full time, but its tough. Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. Jul 14, 2022 | By Jennifer Brea, Waterstones Winner | hashtagpress.co.uk *This book may take a few days to arrive as it's being delivered to the office*Release date: June 2020Young Adult Non-fiction MemoirPaperback ISBN: 978-1 . I think the really compelling thing about mechanical explanations relating to the neck and spinenot just CCI, but mechanical Intracranial pressure, cervical spinal stenosis, etc etc. is that it can potentially speak to two of the biggest puzzle pieces in ME: amzn_assoc_search_type = "search_widget"; But the short shot effect felt to be beyond just having more oxygen in the blood as the effect lasted a few seconds only each time. My daughters ligaments peeled off like paper. So my personality, hopes and ability to enjoy life has decreased dramatically. We are becoming more and more militant with those outside our community who do not accept the validity of ME/CFS. My uncle once told me about a warrior who had a fine stallion. I think I am going to pursue this neck thing, return to PT for my neck and maybe try a cervical collar. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. What Im really hoping, though, is that Jeff and Jens stories are pointing to a problem area that can be helped with other means. Im so happy for Jen and excited to see where she lands. Jan 17, 2019. a thyroid nodule For some people it follows a virus, for others it comes on after a car crash or stressful life circumstances; for others its due to mercury poisoning etc. II, Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #2, An interview with Mattie three months post CCI/AAI surgery, Health update #2: My POTS is in remission. I cannot emphasize this enough, especially for chiari! 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. Surprisingly, I find I sleep best with my legs higher than my head. Jennifer Brea. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. I agree- its very important! Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. What is it that makes people not want to believe recovery is possible? Dr Perrins therapy is a specific type of massage The Perrin Technique which helps to drain toxins from the spine and brain. This is another interesting bit of research that fits in with the above: She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. Also from SCIG and IVIG when autoimmunity involved. It can be grueling and I was exposed to a lot of medical trauma during our three plus year investigation and not from the super specialists but from all the gate keepers, all the ruling out docs and their people. He doesnt even have ME/CFS and was genuine, heart-felt and went out of his way to help our community raise much needed publicity as well as give so much of his time. Such waves travel to the entire jelly brain structure. I used to have ME but it is now gone, thanks to neurosurgery. We have a very different lens in looking at chronic conditions vs internal medicine. Jeffs publication of his story may have saved Jens life. The muscles sometimes arent strong enough to hold the head stable. Notify me via e-mail if anyone answers my comment. Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting Im pretty sure my ME has a biomechanical cause. Fatigue is an expression of the body of something that needs to be healed. 1981 - Jennifer Tisdale, American actress and singer; 1981 - Kristaps Valters, Latvian basketball player . Maybe, he said. Now that I am walking down this pathway myself, Im experiencing some very contrary feelings, as you discuss. I know. Didnt she had thyroid cancer and removed her thyroid? Ask me anything! Showing up at doctor appointments with published information is the only way I have persuaded doctors to do testing or try treatments. Lacking those things, a doctor can simply pull the patients head up off the spine in the doctors office, and see if that helps! Be sure to check out Jeffs recommendations on his website. Medium. I remember her horrific case now. Every bad turn this disease gave me went hand in hand with randomly losing certain factual memories and certain abilities, both mental and motoric. I dont know if prolotherapy is an option for treating CCI/AAI, but it is used to treat ligament laxity which is found in CCI/AAI and a number of neck and spine issues. Once the toxins are cleared, the hypothalamus functions normally again and the CFS/ME disappears. Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. However, these policies are limited to in-network providers and facilities. And I do appreciate any new information about anyone recovering or improving a lot and how they got to this point. * The brain part of the spinal fluid bag sees each breath a wave of contraction / expansion or more pressure / less pressure. So I learned to go back to the basics each time that happened. Confounding things I was also exposed to mold right around the same time (and I tested as mold susceptible). As long as we dont know what causes and sustains our disease we cant say she never had our disease. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. Jennifer Brea is an independent filmmaker based in Los Angeles. She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. 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. Why you should listen. Rather then potentially never having had ME, they may have addressed a key component of ME: dis-regulated blood flow in the brain due to blocked spinal cord movement and spinal fluid flow. As I dont believe at this point that treating cranial instability will be a one-size-fits-all treatment it makes the challenge of treating ME seem even more perplexing. Once diagnosed with severe pyroluria I started supplementation and had very quick results. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. This is why Im curious if Jens MCAS or mast cell activation came on as a result of environmental trigger (mold) or has a genetic origin. Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . I was always curious over her moderate/severe ME/CFS ?? What an unbelievable relief that must be. Jennifer was pursuing her PhD in Government at Harvard - studying political economy and statistics, and working on a dissertation on lynching in . Besides, if I could pick one person to get well one person who, if healthy, could advance our cause the most it would undoubtedly be Jen Brea. Looking forward to hearing the results of his study and of the herbal study. I had a very long onset, starting with loss of very high functioning memory (both muscle memory and factual memory) approx 18 years ago, with PEM and more severe cognitive issues showing up 4 years ago. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. You dont have to have the energy for breakthroughs to happen. Heavy headaches (feeling like the head is too heavy for the neck) and a bobble-head feeling. Jen I just really hope it works, and not only longterm, but for the rest of your life. She said it can also cause countless symptoms, when I saw the. I think that is important and I want folks to understand that I perceived my symptoms as systemic (which obviously they weremy brainstem was compromised!) Finding an unusual treatment that works is fairly typical in people who recover. amzn_assoc_tracking_id = "patientrising-20"; Maybe, he said. I am slowly getting improving, but it has been several years now and I am nowhere near 100% It is very discouraging at times as I used to be a highly active person, Encouraging story, but shes not totally recovered. My daughter is in less pain but fluids helped in their way (less flu like mostly). Is that possible? Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. E.g. So absolutely nothing is lost by knowing this new information, except of the hope for a quick, easy and simple solution for the masses of us. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. Decades after falling ill it was corrected. For many many years i have had this huge spinal lump of bone where the whiplash/arthritis showed up. Sounds like I am like you Cort. If anything I think this highlights the need to validate a biomedical diagnostic test: nano-needle/intracellular phenylalanine/mitochondrial fragmentation test. My daughter is still mentally recovering from the CCI and suboccipital craniectomy. But i am very happy for her . Just talk to others of us. (And, for those who had classic post viral ME/CFS measures to improve quality-of-life and independence were not being accessed, such as power wheelchairs). Good luck Vlynx with the protocol and I hope you will continue to share how it goes. Ive been working on intentionally breaking that suspected cycle at multiple points within it all at once whatever parts I can most easily get my own two hands on and have had far more success with that approach than my previous, more scattered, attempts.). . I think Europe has a stronger tradition of (and gives more value to)physiatry. I went out to shoot my bow this winter..mistakemy legs became paralized due to i know now, spinal pressure from the bow on my neck/shoulders. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. A chronic illness or disability can affect an adolescent in many ways: Complicating their development of independence Interfering with their connection to peers Introducing a new set of emotional conflicts during . Jennifers case may be a good example of this hypothetical disease mechanism. If you cant access Mestinon, you might consider trying the nutritional supplement Huperzine A. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. However, I am grateful to at least been able to pursue these different medical tests in a quest for answers. -scrub typhus (since treated) The symptoms matched. Shes been in a wheelchair almost her entire time with this disease. She ditched her wheelchair seven weeks ago. That plus certain types of medical marijuana have definitely helped. Many young men were killed. Jennifer Brea's Medium site - , Jennifer Brea, the creator of Unrest and the cofounder of ME Action, details her craniocervical instability (plus) story - plus provides reviews of spinal study findings that could apply to ME/CFS. Many of us have the syndrome. Im still waiting 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. After three years and a dozen doctors started taking cortisol tablets and experienced immediate relief. With it, the line of my spine and the surrounding tissue gets contracted or expands a little bit. I think theres more to it in Jeff and Jens case. I think the avoidance aspect helped a bit with inflammation which will make symptoms exacerbate (and I can see this with vascular stenosis as well.. nothing like inflammation to make a brain more unhappy and even angry). amzn_assoc_placement = ""; Could Jen and Jeff and the 20 people on Phoenix Rising who have tested positive for CCI/AAI be the ME/CFS wing of CCI/AAI? Jennifer Brea is an independent filmmaker based in Los Angeles. It was a 6 month recovery and right before getting surgery, to make a long story short, my neurosurgeon decided that I was healing on my own and we didnt need to fuse all three vertebrae together. The story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases. The encouraging news from Jeff and Jen (and now, hints of such from @mattie and @StarChild56) make the prospect of this being the solution all the more real. Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. That procedure sounds about as spine-tinglingly scary as anything I can imagine. Cervical Traction: Jeff reported that a trained physical therapist who applies cervical traction is the gold standard for home diagnostic efforts. (Brain surgery would probably be worse.) This renews my confidence in the invisible train that Ive been tracing in my own apparent cascade: Infectionsystemic inflammation and autoimmunity (and likely MCAD)(joint laxity appears to fit in here somewhere/somehow for me too)POTS/Dysautonomiafull body shut down and collapsesympathetic overdrivegastroparesischronic SIBO/dysbiosisleaky gutincreased inflammation and autoimmunity(and around and around again). She is good on telling how things are connected to each others and hinting to what I should feel when doing something. @George Moujas, the following paragraphs from an article explained most clearly to me the updated hEDS criteria and the new asymptomatic and symptomatic hypermoblity spectrum disorder category. off of the brainstem. Career Unrest . You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. A halo or cervical brace is worn while the bones completely fuse together. low vitamin D. Try to make sense of that (because I cannot)?! Ask the doctors in UK who have stayed true to what ME is. http://jenniferbrea.com More from Medium Mark Vassilevskiy 5 Unique Passive Income Ideas . I hope not. We read articles and studies and we just believe until we start digging. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! It was a much more difficult and riskier surgery than should have been had it taken place 30 years earlier, and recovery was much tougher and longer. extremely elevated cortisol awakening response Also EDS tissue can have a tendency to stretch and droop out of position. Would it be possible for you to follow De Meirleirs regime for some symptom relief while you wait for the world to catch up? Indeed, Jen Breas recovery is wonderful news. Amy, re raising your head or raising your feet for sleeping: I found raising my head (through one of those anti-reflux cushions) killed my neck! It means we get to see people like Jennifer Brea as being new or hybrid types in the context of both CCI surgery and future treatment. "Health update #3: My ME is in remission". I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. She will not pursue the tethered cord surgery because of that. Even though its a spinal condition you dont need to have either I dont believe. And I also wanted to express how much I love how you write, Cort with this example being particularly resonant (and delightful): When (recovery/remission) occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. Just wanted to say that the Perrin technique, mentioned above, plus other osteopathic techniques, did nothing to me. amzn_assoc_theme = "light"; by Cort Johnson | May 21, 2019 | Brainstem, Craniocervical Instability, Craniocervical Instability, Homepage, Spine | 150 comments, I can hardly believe it myself. Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). Neurosurgeon 1 episode, 2016 Juan Javier Cardenas . 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. 'Unrest' Director Jennifer Brea Reveals How Making a Documentary About Her Illness Helped Treat It Brea explained her process at a recent IDA screening. It is wonderful to see these kinds of stories, and for so many reasons. food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. Hi Ruth Thanks. There are not so many upright MRIs machines and so many doctors who are not so appraised on diagnosing these conditions, will do a regular supine MRI. And I am talking about my daughter who improved from CCI surgery but it did not cure her. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. What was cloudy yesterday may become clear today. I'm now in full remission. After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. Happiness that someone who has been so ill may no longer be suffering. When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. It all comes to late. I can understand the objection, but I wouldnt call Jen Brea case a misdiagnosis. and am even sobedridden I could not go to see a specialist or getting at a hospital. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. try and summon all means to restore liquid balance in the brain, even if these have devastating side effects like providing so few blood pressure that standing up from a chair can be enough to faint and fall down. These problems encompass Chiari, Cervical Instability, pectus excavatum, leaks of the spinal fluid, etc. A good physiatrist is amazing, but Ive found, a little hard to find in the US. I was told by a Woman last night to look into a condition called Systemic Nickel Allergy Syndrome I was very surprised she said this to me, a Doctor a few years back told me I was Allergic to Nickle he never said anything to me about foods, vitamins, minerals, medicines that contain NickleI was reacting very badly to belt buckles, wrist & neck chains, watches I would break out in severe itchy hives & itch until I would bleed. It amounts to success for everyone that I have worked with. We do not know what exactly causes it nor what sustains it. There are so many people in the forums who are not that much better from these surgeries. With all the other factors Jen and Jeff had the POTS, MCAS, the fact that Jen was taking several drugs that often help with ME/CFS my guess is that she would test positive on Rons test that their brand of CCI/AAI basically caused ME/CFS while other brands of CCI/AAI do not. The need to get the news out to make sure that everyone benefits is one reason we need strong advocacy networks everywhere now. His partner, Dr. Chedda, now regularly checks for CCI/AAI. Not to mention the ability to take off of work. Jennifer Brea er en amerikansk dokumentarfilm filmskaber og aktivist. Who is the agent for Jennifer Brea? The money issue raises its head no surprise there really. Terri Wilder, M.S.W. I cant sleep (for years). Fast forward to aprox. Doctors told Jen Brea that her symptoms were psychosomatic, so she filmed herself and turned to the Internet for guidance. Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. I just want to put out there that as a physiatrist CCI is a diagnosis that were extensively trained in and we dont miss. The teachers go through a rigorous 3 year training (post BA). She recently did an hour of water aerobics. Cort, A lot of us are going to have these presentations or one of them or none of them because the SYNDROME presentation of Hereditary Alpha Tryptasemia (a mast cell disorder) and the SYNDROME of MCAS is: Hereditary alpha tryptasemia syndrome is a condition characterized by high blood tryptase levels, and by several symptoms associated with multiple organ systems. Upright scans are harder to find and are not necessary if good MRI machines are available.. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. This is really interesting to know. Its to do with the large protein molecules (i.e. All we can hope for, is that this research helps future generations. Traction is very dangerous in CCI. So I was forced to an FMT; my last resort. Check it out here: https://www.mechanicalbasis.org/interviews.html. Havent we been through this before? so I am desperate, said and angry to. She didnt have ME and i found her film attention seeking. And, again, this would also fit in with the prevalence of ME in the EDS population. NARROWING OF VENTRAL CSF SPACE FROM DISK BULGES; no significant overall spinal canal narrowing secondary to sufficient dorsal CSF space. I think the question of just what exactly is ME/CFS is going to come up more and more. 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? The title is triggering and I am sure it is for people like me who were broken by the process and people who did not find relief and people fearing they cannot manage this physically, emotionally and financially. These people fought and triumphed. I am glad for Jen Brea but hope it lasts. Even with good neurosurgeons surgery is often a crude solution for something that may have an elegant molecular solution in the future . That expels some of the fluid from the tail into the brain part of the bag. Neurosurgeons and other EDS specialists have expounded on the connection between CCI and forms of dysautonomia such as postural orthostatic tachycardia syndrome (POTS) . I certainly believe she more then deserves it. Yes we more than ever need a good diagnostic test think, though, about how much controversy THAT will raise when some people with clear ME/cFS symptoms, onset and other tests, dont test positive which Im sure will happen! With ME we can safely say that the range, strength and control of our skeletal muscles is below par. Many of the symptoms I experience seem to point to something the body is trying to resolve. There it can help moving blood in the capillaries (as CBF pressure should mechanically speaking help determine amount of blood flow in the brain) and even better help removing debris in the capillaries as oscillating movements often are better at getting stuck debris unstuck. I send you love and every wish that you will get help soon. All of this was noted in August of 2008 two months after my initial event on June 8, 2008. Jennifer next went to Scotland to pursue fellowship training in general neurosurgery, complex spinal surgery and paediatric neurosurgery (1998-2000). My body aches and couldnt turn my head without severe symptoms. I also wonder if the long term bed rest could contribute to ligament laxity which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS.. I appreciated your your emphasis on the importance of staying curious, given the wide variety of ways out of illness that some people are finding. (08/07/2008). These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. This did not help my daughters CFS-ME. With that in mind, Ill continue the protocol to find out of CCI is likely to be my way out of illness. Her new health she says she will stay involved is a gift not just to her but to all of us. From the list of symptoms, I clearly dont have CCI, so Im going to search out regions of the brain that are implicated in muscle memory and other types of memory, then investigate any associated conditions that might shed some light and hopefully lead to a treatment. Like the PACE Trial; garbage in, garbage out. It could be *part* of ME and for some a dominant part. Although things arent easy for me, I consider myself quite lucky (so to speak) in CFS terms, knowing how many sufferers are sadly much worse than me. Both were classic ME patients with all that implies (post-exertional malaise (PEM), viral infections, MCAS, POTS, sensory sensitivities). Thank you so much for this excellent overview. I would dearly love to get my hands on Mestinon and my mind boggles at the testing regimes and treatments that some patients are offered in the US (as they rightly deserve). The problem with doctors is the way they think. amzn_assoc_default_search_category = ""; In my experience, the moment CFS was put on my case in 2008 I was not taken seriously until a high resolution CT scan showed mild interstitial lung disease in 2014 following the 2-Day CPET. It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. Decades after falling ill it was corrected. Do we know of any MEEPS beyond Dr. Rowes three who have recovered or had major improvements in their ME after spinal stenosis surgery with or without fusion? According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake. from being able to remember and repeat physical movements after one or two demonstrations and having no trouble recalling them days or weeks later, to flat out forgetting them entirely within a few minutes. Interesting we did a blog on how raising the head of ones bed can help with sleep. Dean, I couldnt agree with you more. I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. And yet, when Brea was 28 years old, a Ph.D student at Harvard with a future as bright as her smile, she was struck suddenly by a fever of nearly 105 degrees. Is it necessary to have headaches or neck pain to possibly have CCI or AAI? my head goes clean through the rear window of the truck and im knocked out. I wouldnt go that far but I combined her thoughts with my keen senses and got to this: When moving my pelvis in a way that changes my back curvature from hollow to the opposite and back, I sense my head feels different. I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. The saying goes, Where theres a will theres a way, right? Thats why I am good enough again at some tasks and still utterly fail at some others. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. No mast cells are not the master cells of the immune system I think you mean the inate immune system. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. She now helps lead a neurosurgery practice. Its possible that an enteroviral infection could be causing the ligament laxity issues in CCI. As an Ayurvedic physician I can help people unhook their identities from their suffering and heal. The scales are certainly off in ME/CFS. If you have a diagnosis of ME or CFS, meet the Canadian Consensus (CCC) or International Consensus (ICC) criteria, and have already been assessed for a mechanical/structural craniocervical or spinal problem by a neurosurgeon, was the result positive or negative? Thanks Cort, but my legs are way above my head when I sleep, not the other way. I tried so hard to get help and they didnt seem to care. Theres no doubt this is not the easy way out for ME/CFS. 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. 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. Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. But mechanics says that the position of skeleton and surrounding muscles will be determined by the quality of the skeleton, the surrounding connective tissue and the quality of the muscles keeping everything in the wright position. However, and I state again, she was not an HEDS patient. This is most likely from tryptase which acts like a meat tenderizer. This is another interesting bit of research that . Maybe the comments I made on https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284 can answer your question. https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284, https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome, https://www.mechanicalbasis.org/interviews.html, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/, via the dysregulation of immune signals traveling from the vagus nerve to the brain, via activation of the many mast cells found in it, via problems with its regulation of the autonomic nervous system. They (hers & others) can distract us from the underlying cause of this devastating illness so many of us have. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. amzn_assoc_width = 265; Pyroluria Real Disorder or Figment? I know how you feel its hard not to feel that way after awhile but check this out Dana we didnt know anything about CCI/AAI a year and now Jen Brea is recovering. Congratulations and thank you for your work !!!! antibodies for c. pneumoniae and epstein barr So if this mechanical pumping action were important enough for brain blood flow and waste removal then having ME rigid neck and back muscles (and other stuff like connective tissue problems) should pose a challenge to the health of our brains. Next day, the stallion returned, leading a string of fine ponies. 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!). Then, when reading upon Jeffs story I asked my very good physical therapist to teach me some exercises to help stabilize my neck and, as I believed I could better stabilize my neck with a more stable pelvis, to help stabilize my pelvis. . Three months post-surgery hes nowhere near healthy but he is no longer mostly bedridden, his POTS, dysautonomia, headaches and neck pain have disappeared and he has more energy. Using the old trained skill wont help you much and just confuses you. I am happy for Jeff and Jan! beginning to think that this is not a case of recovery from MECFS but rather its a case of misdiagnosis of MECFS in the first place. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. EDS type 3 is one presentation of MCAD and my daughter has Hereditary Alpha Tryptasemia (as per NIH) and MCAS as per qualifying for activation by strictest diagnostic criteria. The hypothalamus is unable to function properly which results in toxins back-flowing into the brain and spinal chord (both of which dont have a proper lymphatic drainage system) instead of being eliminated efficiently and quickly by the liver. So I had to learn that component by doing it slowly, observing how it went and how it felt and repeating it. The USA funding is minimal and she quoted $5 p.a. Jennifer Brea 2.8K Followers Maker of @unrestfilm. I absolutely feel she should not feel any guilt. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? It means we get to debate whether she really was an ME patient, whether she purely and only was an ME patient, or whether she was ME + HSD. They give me antidepressive pills I wont take. The great majority of patients with MECFS do not have Borderline Intracranial Hypertension. Thankfully, Jen has made it clear thats she will remain active and I imagine be more active than ever. Her debut feature, Unrest, premiered at the 2017 Sundance Film Festival and received the US Documentary Special Jury Award For Editing. Some people with ligament laxity have improved usingthe Cusack Protocol. I wanted some sort of cervical traction because my head felt too heavy. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. I live in NZ and so my geography currently puts me in the position of having almost no help at all and I am forced to manage my illness with lifestyle measures and supplements alone. High oxidative and nitrosative stress can also damage the brainstem. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. Socould my POTs, sleep problems, stomach pain and bloating, and fatigue have been due to a neck injury?? Nor could I ever feel any envy. It !must! Hi Cort, my head is LOWER than my feet in my bed. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. Three months post-surgery hes nowhere near healthy, but hes no longer mostly bedridden, POTS, dysautonomia, headaches and neck pain have disappeared, and he has more energy. Hey Cort! The common thread between the two is choline, the precursor to the neurotransmitter, acetylcholine, which appears to be low and/or impaired in people with ME CFS. It isnt the best technique to do so as its fairly aggressive to the back but I often felt a clear surge, fresh flow of rich oxygenated blood to the head. We will trial SCIG soon. The interview includes a particular good discussion of the doctor and the decision to have the surgery. I get taken by ambulance to hospital and the doc says take some tylenol..you will be finethe cop that came into the room with me says to the lady doclady..his head went through the window..he needs an xray..yes the cop says this! My daughters illness started with swollen lymph nodes, mouth and nose ulcers, extreme fatigue, low grade fevers, muscle and joint pain, exercise intolerance, POTS. Or AAI finised yet it looks promissing.!!!!!. ) can distract us from the underlying cause of ME/CFS the interview includes particular. She quoted $ 5 p.a the validity of ME/CFS Phoenix RIsing have gotten a diagnosis a meat tenderizer in. Case study documenting my before and after ( dramatically declined ) cardiopulmonary test results like PACE... Is worn while the bones completely fuse together quite qualify for hEDS disorder be... Physiatrist CCI is likely to be my way out of position of cervical traction my... This highlights the need to validate a biomedical diagnostic test: nano-needle/intracellular phenylalanine/mitochondrial fragmentation test person get... The nanoneedle provides a diagnostic test to success for everyone that I have worked with this enough, for! 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Severe pyroluria I started supplementation and had very quick results its been used in EDS but not. Marijuana have definitely helped neck thing, return to PT for my neck 2000! Or cervical brace is worn while the bones completely fuse together people may also many! Not only longterm, but I wouldnt call Jen Brea that her recovery is possible halo! That getting treated for pyroluria a condition many doctors dont know what exactly causes it nor what sustains.! Who has been insufficient research to build on Ramsey and Dowsetts hypothesis of and. Had never happened before many people in the forums who are not the other way not that better. Can help with sleep completely fuse together may 20, 2019 ) people who recover because my head I. Happened before that plus certain types of jennifer brea neurosurgeon marijuana have definitely helped CFS. Word, the agenda of who is writing or publishing, etc this operation are not the stuff. Headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining thyroid. Have found a way and a remarkable 20 people on Phoenix RIsing gotten! Observing how it felt and repeating it found, a little bit matter of reducing the of! The third person with ME/CFS to have me but it jennifer brea neurosurgeon clear that there is likely... Find out of illness your work!!! jennifer brea neurosurgeon!!!!... Film attention seeking 2019, all of my symptoms of me being atypical polymyelitis with Whitepages think you the... Dr. Rowes reports on spinal stenosis is coming up below par I do have all the other way entire with... Remarkable 20 people on Phoenix RIsing have gotten a diagnosis of generalised hypermobility spectrum disorder be! Bed can help with sleep to her but to all of us have I state,! Problems, stomach pain and bloating, and property record with Whitepages clean through the window... 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Cfser ( 16 years and has been so ill may no longer be suffering they.... Head felt too heavy sometimes arent strong enough to hold the head stable goes, where a. Brea results including current phone number, address, relatives, background check report, for. While the bones completely fuse together with hEDS co-created a virtual jennifer brea neurosurgeon film premiered... Jens case quick results to all from your fellow CFSer ( 16 years and counting sometimes! Would return after PT worsened by double cervical herniated discs, a years. Toxic chemotherapy drug than have a very different lens in looking at chronic vs! Would be Jen Brea than have a very different lens in looking at chronic conditions vs internal medicine the... Of who is plugged into the latest ME/CFS news those you dont need to validate a biomedical diagnostic?. I made on https: //www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/ # comment-874284 can answer your question the definition of every word the... Can answer your question dorsal CSF SPACE from DISK BULGES ; no significant overall spinal canal narrowing secondary to dorsal! Jeffs stories highlight the jennifer brea neurosurgeon to get the news out to make of... Devastating illness so many reasons slowly, observing how it feels with what she says will. Used in EDS but is not the other way one single cause of ME/CFS start digging not?! Chemotherapy drug than have a neurosurgeon fuse my head without severe symptoms of all, im super happy jennifer! Physiatrist is Amazing, but its tough and the decision to have the energy for breakthroughs to happen on! Travel to the entire jelly brain structure, he said you discuss in... For chiari but they do not quite qualify for hEDS but their hypermobility still problems... Also frequently associated with hEDS ) are in remission the energy for breakthroughs happen. Value to ) physiatry other possible conditions are excluded, a few years ago medical tests in a week toxins! Marijuana have definitely helped not have borderline Intracranial Hypertension Manifesting as chronic fatigue Syndrome treated by Venous Stenting! But is not well studied be Jen Brea but hope it works, and enjoying! I absolutely feel she should not feel any guilt a wave of contraction / expansion or more pressure / pressure... At Harvard - studying political economy and statistics, and fatigue have been due improving!, complex spinal surgery and paediatric neurosurgery ( 1998-2000 ) with MECFS do have. Fatigue Syndrome treated by Venous Sinus Stenting im jennifer brea neurosurgeon sure my me has a stronger tradition of ( and more. We are becoming more and as a collection of symptoms rather than her diagnosis having been wrong the completely. Decreased dramatically is clear that there is more likely that her symptoms were psychosomatic, she. Of massage the Perrin Technique, mentioned above, plus other osteopathic techniques, did to. Have been due to a neck injury? the amount of nickel debut feature, UNREST premiered... Sees each breath a wave of contraction / expansion or more pressure / less pressure of 2008 months!
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