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. Didnt she had thyroid cancer and removed her thyroid? One person diagnosed with CCI reported on the Phoenix Rising forumsthatmanual traction (having someone pull on ones head while lying down) can help, and prescription drugs have resulted in major improvements. I think CCI is just one way mechanical issues may manifest, but it gives us a clue to the importance of head, neck and spine mechanical issues in ME in general. For those of us still with ME/CFS, look to others who are not flashes in the pan. If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.. They (hers & others) can distract us from the underlying cause of this devastating illness so many of us have. Theyre probably a lot easier to get a hold of than a neurosurgeon. 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. In the end, my dream is that all of the suffering caused by this disease and the large effort needed to combat it will increase understanding of this disease as a series of mechanisms, learn how to differentiate between symptoms that drive this disease and symptoms that are the result of fighting this disease and result in a sort of extensive diagnostics and treatment plan that gets to the root of our health issues. 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). 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. http://jenniferbrea.com More from Medium Mark Vassilevskiy 5 Unique Passive Income Ideas . Ann, you are so right. Jennifer Brea: I have craniocervical and atlantoaxial instability. Some of us have multiple family members with mast cell disease and can trace our symptoms back to childhood or infancy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. The problem is not someone becoming well but the shadow that recovery casts on our current situation. Even if you dont have CCI/AAI, the search for it may help uncover other problems. I cant even find the words to let you know how thrilled I am for you! Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . Thanks Cort, but my legs are way above my head when I sleep, not the other way. Agreed. Dr. Jennifer A. Mast cells are the master cells of our immune system and can recruit the other immune cells into action. Who knows what will happen if the nanoneedle provides a diagnostic test? Both VanElzakker and Barnden are employing those techniques as they continue their brainstem studies in ME/CFS. Nickel is an every single food, pretty much. If you cant access Mestinon, you might consider trying the nutritional supplement Huperzine A. That kinda bites. Ventralbrainstem compression is not always seen in traditionalsupine MR imaging but its usually very evident on dynamic upright imaging which has the patient flex and extend their neck. It is wonderful to see these kinds of stories, and for so many reasons. 'Unrest' Director Jennifer Brea Reveals How Making a Documentary About Her Illness Helped Treat It Brea explained her process at a recent IDA screening. Pyroluria Real Disorder or Figment? During the surgery, her neck was hyperextended to intubate her. This is really interesting to know. The saying goes, Where theres a will theres a way, right? This is such an obstacle that it almost makes me wish Id never heard of CCI! Her POTS disappeared in March. That said, this news has spurred me in a new direction in the chase for the cause of my ME/CFS. Fighting the 'Plandemic' and Other Science Disinformation Campaigns. Narrower spinal column? (X-rays are not sufficient to test for this condition, however.). Everybody said how lucky he was to have such a horse. My daughters ligaments peeled off like paper. I take one pill in the morning and one in the early evening. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root . Dejuergen, if in theory Jen and Jeffs CCI was caused by inflammation triggered by an virus why would treating the CCI heal all symptoms, surely some illness would still be remaining? So it goes for many people whove recovered. FIND SUPPORT Are you patient look for social support or wondering how to get diagnosed? My daughter is still mentally recovering from the CCI and suboccipital craniectomy. More potential for movement in the pelvic area that could cause destabilisation upwards into the spine and neck? Just think about how you try to get stuck objects unstuck: not by keep pushing onto it but by alternately push fort back forth back. We could not avoid the unsafe people during this process that took us at least 3 years and only one surgery accomplished. Also pay attention to the Polyvagal Theory of Sthephen Porges. Jens CCI surgery could be just another coincidence. Jens story beginning with thyroid cancer reminds me of this story told on the TV show Northern Exposure by character Marilyn to Ed. 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. NZ is third world by comparison and I am so tired, not just from the illness, but from the complete absence of any support, medical or otherwise. You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. The great majority of patients with MECFS do not have Borderline Intracranial Hypertension. In fact, the tryptase from the mast cells will likely continue to degrade the collagen, to my understanding, so such a surgery would only be a temporary band-aid for *some* symptoms, not all. At the same time I learned that I still could do very simple basic movements well. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. I will put that in the blog . Hi R, did you mean that surgery to correct CCI/AAI did not cure your daughter of ME/CFS? She speculated and conjectured on Medium that she might fit the mold of EDS, but there is disagreement within that community (join and search hypermobility through the backlog discussion on the Cusack protocol group) over what constitutes an EDS diagnosis and what does a hypermobility spectrum disorder. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. I also agree that spinal fusion, especially such a highly specialized procedure as craniocervical fusion, would not be my first pick for treatment. If so, might I ask who performed her surgery? Both were classic ME patients with all that implies (post-exertional malaise (PEM), viral infections, MCAS, POTS, sensory sensitivities). 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! I tried so hard to get help and they didnt seem to care. Who is the agent for Jennifer Brea? Yes. That is great to hear! Its a slow process but it was and still is to some extend an essential step in increasing my capabilities again after each crash. After reading Jeffs account Mattie thought he didnt have CCI/AAI but got it checked out anyway and found, to his surprise, that he did. The addition of EDS in Jens case restricted to the ligaments involved and MCAS adds more layers that folds her into a huge assemblage of ME/CFS/FM/POTS/EDS/MCAS patients. Jen never had ME/CFS. At least now, she is out of her pain. Previously, she was a freelance journalist in China and East and Southern Africa. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. View Jennifer Brea results including current phone number, address, relatives, background check report, and property record with Whitepages. She even changed the color of Royal Blue to Red , Red is HIV Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. 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. amzn_assoc_default_search_category = "";
Ive seen many spinal fusions in my work (though not of this type) and I know recovery from these operations is no walk in the park. It did worsen my instability, which is how I got diagnosed and treated. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. Wesley Fryer via Flickr. Decades after falling ill it was corrected. I know this is how ME started but its been decades and were no further on the atypical poliomyelitis front. Thank you so much for this excellent overview. All things that are treatable, should be treated. E.g. I remember her horrific case now. At the beginning of May, a 26-minute trailer for the movie . I absolutely feel she should not feel any guilt. I do hope that she will -as she improves also enjoy and reacquaint herself fully with the benefits of better health and come back rejuvenated and ready to rock and roll . After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. The EDS / ME/CFS connection is getting ever more interesting. She will not pursue the tethered cord surgery because of that. I am incredibly happy for them, and it is a good reminder that good news can surprise us as well as the other sort. Shes been in a wheelchair almost her entire time with this disease. I had to relearn doing thins as simple as how to stand up from a chair, opening a door and walk through it without bumping into it and how to do corners like walking around the corner of a table. This line holds the long tail of the spinal fluid bag. I also wonder how many men with ME had suffered a traumatic injury to the back or neck at some point prior to becoming ill? It seems to bring balance back to the sympathetic and parasympathetic nervous systems. It triggers me (pardon another pun) just like the mold topic does. Jeff, Mike Dessin, and the heavy metal poisoning patient were more similar to Whitney Dafoe than your run of the mill (but still incredibly limited) ME/CFS patient and yet they fully recovered. Thanks Cort, for reporting on this and other stories of recovery. Im about to have my first consultation with one of his associates this week. The other big distinguishment between the two paradigms is in Western medicine people identify with their disease. They are their disease. 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. Sinus surgery proved the cure for Diane. (Dr. Chedda reported that she routinely does this.). 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. Around 2000, a group of Fibro and CFS patients, including myself, were diagnose with Arnold Chiari Malformation. amzn_assoc_ad_type = "responsive_search_widget";
Other people can take of that. It could be *part* of ME and for some a dominant part. Jens rebound after being in such bad shape did suggest we have amazing powers of recuperation. I dont know if you saw my post above about having an incurable condition called interstitial cystitis. My body aches and couldnt turn my head without severe symptoms. Whatever kind of CCI/AAI she had, it was different from what hed seen before. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. Huperzine A caused tummy issues with me, as did mestinon. The orthostatic intolerance disappeared overnight, but surgery came too late and I am at early stage of heart failure. But it is just too hard to imagine that given what we already know of CFS and its known risk factors. To his surprise, he met the criteria. Waiting out the danger by just hibernating and not minding accumulation of liquid in the brain would kill you within less then a day. It might be best to look for a reputable pain clinic in the area, call them up and ask them about it. Browse 72 jennifer brea stock photos and images available, or start a new search to explore more stock photos and images. I am happy for Jeff and Jan! It is time we become just as militant with those inside our community who refuse to accept the validity of recovery. Find a doctor Back Find a Doctor. It really helps pull together all the threads! With that in mind, Ill continue the protocol to find out of CCI is likely to be my way out of illness. Jennifer Brea is a filmmaker and activist. It improves the function of the vagus nerve and also peripheral muscle signaling (muscle fatigability)at least it did in my case. So, for patients, who have CFS symptoms only, need to consult neurologists, neurosurgeons to find out if it's right to take spinal surgery in order to cure CFS. As a result, I learned that even small regular movements of the pelvis, like every single time I do a cycle of diaphragm breathing, is sufficient to give a single tiny boost of rich oxygenated blood lasting one to two seconds to the brains. #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. For me, toxin buildup in the central nervous system certainly makes sense. Trying to move, work, think, speak while your body is in hibernation causes plenty of damage, metabolic waste, inflammation. It also may demonstrate how each individual change in the body can affect the entire body, just like an individual change in an ecosystem changes the entire ecosystem. A neurosurgeon saw my MRI in Unrest and emailed me to say."yeah, that 'normal' MRI isn't 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. However, not all neurosurgeons will be familiar with them. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. Traction is very dangerous in CCI. 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). Maybe, the warrior said. @Kim Jeff just interviewed someone who recently had the surgery. Again, none of this has been a cure but with pacing, infection and stress avoidance, and staying within preset limits (total daily steps and anaerobic heart rate), Im less sick and have an improved, albeit still limited, quality of life. 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. There are still the vagal sympathetic synptoms and the neck pain. Jennifer Brea is a filmmaker and activist. That said, I dont blame patients objecting to this kind of recovery story. Oh Brigitte, I am so sorry. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. amzn_assoc_marketplace = "amazon";
She was traveling all around the world giving talks & lectures, going out for meals, consecutive days, & always looked vibrant & well, with an incredible upright strong posture, obviously no brain fog or PEM etc etc was puzzling to me? She's even a certified medical acupuncturist! low testosterone (possible sign of infection?) Aidan, I am sorry to hear that someone did not tell you more about your nickel allergy and then did not educate you about it. My days are now filled with thoughts about life, not illness and symptoms. Jeffs publication of his story may have saved Jens life. Cort, I dont think Jennifer was ever an EDS patient. Brea, Jennifer (May 20, 2019). Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. -scrub typhus (since treated) After some reflection, I dont think its as bad as that. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. Hi matthias, Decades after falling ill it was corrected. It requires a keen eye, and the ability to think outside the box. I would put anyone whos in a wheelchair as having a severe illness however. I was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). And she had suffered from PEM which most of us CFS patients consider a hallmark symptom. #MEAction has always looked to the HIV/AIDS movement for inspiration, and we have learned so much. That being said it is my hope that you can put your forces behind the search for a biological marker. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. I think theres more to it in Jeff and Jens case. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? Well said, Michele Brown. 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. She said it can also cause countless symptoms, when I saw the. NARROWING OF VENTRAL CSF SPACE FROM DISK BULGES; no significant overall spinal canal narrowing secondary to sufficient dorsal CSF space. Her office accepts new patients. 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. extremely elevated cortisol awakening response That helps removing waste out of the brain. Im in awe of what both of you have achieved. Ive had neck issues for many years, but cant convince doctors to investigate. If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through. Dr. Bolognese reported that a treatment plan for craniocervical instability typically begins with things like neck bracing, activity limitation, physical therapy (including isometrics, core strengthening and cardio), as well as pain management. * The brain part of the spinal fluid bag sees each breath a wave of contraction / expansion or more pressure / less pressure. Like the blog you're reading? Its the first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. What has helped somewhat is daily valacyclovir. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. 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. Sounds like a case of misdiagnosis to me! Jennifer Brea Health activist, filmmaker Contact Jennifer Brea Blog/ Home/ My Story/ Filmmaking/ Unrest Unrest VR Activism/ #MEAction Speaking/ Contact/ SPEAKING INQUIRIES For inquiries about speaking engagements, please visit the speaker page. If you were a betting person what odds would you have put at that happening? You are right though Cort that it raises some difficult emotions. I only started the Perrin exercises about 6 months ago so that cant be why the hump is lessened. As Dr. Davis has recently pointed out, that is key to gaining acceptance by the Medical Community, as well as much more money and research and hopefully a cure for this dreaded disease. Would it be possible for you to follow De Meirleirs regime for some symptom relief while you wait for the world to catch up? These problems encompass Chiari, Cervical Instability, pectus excavatum, leaks of the spinal fluid, etc. He found that 30% required a tethered cord release surgery either before or after their craniocervical fusions. The first surgery was done by the doc in NY and they tried to repair it in UK afterwards, according to one of her relatives email to me. Hope Jeff & Jen & other cases do get documented. Now that I am walking down this pathway myself, Im experiencing some very contrary feelings, as you discuss. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. fast forward to 8 months ago my natropathic doc says we need to test your heavy metalsit comes back that my levels of uranium, nickel and antimony are way high. She describes how her online community helped her find the right diagnosis. Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. Moderate to severe ME equals to severe to devastatingly severe illness IMO. Directors Jennifer Brea Starring Jennifer Brea, Omar Wasow Genres American neurosurgeon, author, and politician; 1951 - Dee Dee Ramone, American singer-songwriter and bass player . His partner, Dr. Chedda, now regularly checks for CCI/AAI. I found them after PT worsened by double cervical herniated discs, a few years ago. They were different from the typical CCI/AAI patients. 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. Looking forward to hearing the results of his study and of the herbal study. . Best of luck! 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. Anothers surgery is on tap and one was recently done. .adding to the above.. i know this only pertains to some of us. The real hero DownUnder was David Tuller. Ron Davis and to some extent Naviaux believes that in many cases this danger is long gone and hence the hibernation is wrong and should be reset. 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. 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. All of these seem to be simple movements but are in fact very complex composite movements that are very difficult to learn a robot to do it. After graduating from Princeton University with an AB in Politics, she was a freelance journalist in China and East and Southern Africa and a TED Fellow. Thank you, thank you, thank you. hEDS and hypermobility were often interchangeable until the recent criteria establishment. The difference is important. Im so happy for Jen and excited to see where she lands. A 2003 study suggested that reduced motor cortex output was reducing muscle recruitment in ME/CFS and causing fatigue. Heavy headaches (feeling like the head is too heavy for the neck) and a bobble-head feeling. Would you share the Hyperzine product thats working for you? 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. I found LND problematic but much prefer the dextromethorphan . Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Not a cure, but much improvement in brain fog and fatigue & recovery times from over exertion. Kaiser Permanente Inglewood Medical Offices is a medical group practice located in Inglewood, CA that specializes in Family Medicine and Internal Medicine. 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. I certainly believe she more then deserves it. Hendes debutindslag, Unrest, havde premiere p Sundance Film Festival 2017 og modtog US Documentary Special Jury Award for Editing. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. Also in terms of severe, moderate, mild these are relative terms. If I remember correctly it basically lifted her head off her spine. The negative fallout from the confusion caused from that episode took years to overcome. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. Its one of those you dont want to miss this diagnosis that is drilled into our specialty training. Thats why I am good enough again at some tasks and still utterly fail at some others. Given the extreme disability sometimes found in ME/CFS, its possible that two of the crucial brain organs involved in movement the motor cortex and the brainstem may have both taken a hit. Her new health she says she will stay involved is a gift not just to her but to all of us. It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. I would love to know how your consultation went. 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. 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). Some people with ligament laxity have improved usingthe Cusack Protocol. I learned about 2 months ago that Dr. Bolognese read my cervical MRI (standard supine is all he needs, unlike some others) as possible CCI, and have since begun the physical therapy routine that he uses as part of diagnosing whether the MRI findings are clinically significant. Thats how genuine he is. But, because of his broken leg, the warriors son was left behind, and so was spared.. After three years and a dozen doctors started taking cortisol tablets and experienced immediate relief. But I want to feel even better, so I am going to pursue more neck/head related options. Dr. Nigel Speight, is one . 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. It makes sense as those are computational far far less complex to do. After ten weeks of treating his gut microbiome, he has improved out of sight, and it is now a whole year and two months that he has not had any relapses. I just want to put out there that as a physiatrist CCI is a diagnosis that were extensively trained in and we dont miss. A halo or cervical brace is worn while the bones completely fuse together. Hi Ruth Its wonderful work you are doing, Cort! Just wanted to say that the Perrin technique, mentioned above, plus other osteopathic techniques, did nothing to me. All these things (for some people at least) help the body eliminate toxins. Each of these could trigger a different (and less invasive) treatment approach. It was not tolerable and she was in a real bad way before she passed. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. Hence why its one of those you dont want to miss complications of rheumatoid arthritis, or dont want to miss for any reason. Our highly specialized spine surgery program offers comprehensive and complex spinal care using the most advanced techniques, and the latest state-of-the-art technology. . is there one in belgium you know? It is not intended as medical advice and should be used for informational purposes only. Ill kick in a donation now to say thank you! kryptopyroluria I use the same process for mental skills. On Phoenix Rising, Jeff reported that the dynamic imaging should also check for Chiari Malformation (which can cause similar issues), craniocervical instability, and tethered cord syndrome (which Health Rising will cover later). i now wonder if there is a way to create bone loss. The gut and its immune system cannot hibernate its defenses. 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! Now today, my neck hurts everyday especially at the base of my head. One thing that you didnt mention is that chiari and CCI are not all that uncommon in people with Ehlers-Danlos Syndromethough not especially common either. I dont know about elsewhere in the world. Thanks. It wasnt that long ago that CCI/AAI surgery wasnt even considered for Ehlers Danlos Syndrome it was the province solely of whiplash and trauma patients. I had at some point absolutely no clue how to do it. The result of toxin build-up manifests as CFS/ME symptoms. via a stunting of the anti-inflammatory response. People too often tout X as the recovery method when the recovery may well have been just a coincidence; you never know unless you do controlled trial. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. This has happened maybe 8-10 times in 7 years. Jennifer Brea is an American documentary filmmaker and activist. I congratulate Jennifer as well as Jeff for obtaining such stunning results, results that were not easily obtained and demanded an uneven fight against this debilitating disease. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. Omar Wasow, Jennifer Brea and Anna Deavere Smith attend the HBO "Notes from the Field" Sundance Dinner at The St. Regis Deer Valley on January 20,. Unless, of course, it works! Dr. Petra Klinge, a pediatric neurosurgeon who specializes in tethered cord syndrome, has proposed that a underlying tethered cord might be a risk factor for developing . You mentioned getting the proper imaging for diagnosis. Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. I felt uneasy writing moderate as well. My grand hypothesis is that whatever caused their CCI/AAI is at work in other ME/CFS patients but is manifesting differently.Hopefully we will know at some point. Each episode of CFS would start out with cold sores, sore throat, severe fatigue, sleep disruption, achy joints and muscles, etc. Jeff just interviewed Mattie three months post surgery. I can do occasional spurts, but exercise of any intensity other than slow walk for more than a few minutes at a time definitely cause PEM for me. It began in 2017. I imagine there may have been quite a blockage there. Brea's health unraveled three years ago. Terri Wilder, M.S.W. 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. Neither are required. Hibernation itself is a damaging process if the patient isnt doing a winter sleep like a squirrel. To add to the problem, we dont always know what information is relevant and what is not. Among the first thoughts I had upon learning of Jens recovery was that if this is what it takes a rare diagnosis and neurosurgery if thats what it really takes to recover, I dont know that thats ever going to happen. It makes me unbalanced as there is so much to relearn and few usable time and energy. Re Jen and Jeffs CCI surgery, if in theory their CCI was caused by inflammation triggered by an enterovirus that caused Classic ME in others, why would treating the CCI heal all symptoms, surely some illness would still be remaining? According to one site, though, these ligaments get reduced blood flows which is another issue in ME/CFS which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS. My difficulty swallowing remains unchanged but I was told if the osteophytes increased in size and I couldnt swallow, I would have to have surgery. My thyroidectomy has no impact on my ME symptoms, for better or for worse. I can only hope that your energy and health remain and your charisma remains with the cause. She had conjectured, I believe, that she had a hypermobility spectrum disorder as a result of her CCI. Not sure whether he meant various Enteroviruses which have an affinity for the brain or more than one type of virus. low vitamin D. Try to make sense of that (because I cannot)?! Often the drooping brain stem will not be apparent unless a patient is upright. Hi! Maybe, maybe not. Likes: Hope4, . I cant sleep (for years). Showing up at doctor appointments with published information is the only way I have persuaded doctors to do testing or try treatments. Doctors told Jen Brea that her symptoms were psychosomatic, so she filmed herself and turned to the Internet for guidance. She was in Miami dealing with another project while coordinating and gazing in the film Unrest. 'Charismatic, smart and determined': Jennifer Brea with her partner, Omar Wasow. Compare it to be used to ride a car and all of a sudden having that car replaced by a truck for mining operations. Later, the warriors son was thrown from one of the ponies and broke his leg. Please note: You may need to reduce your dosage or cycle off it periodically if it becomes less effective. The most important thing for ME/CFS researchers now is to try and write a narrative that makes it appear as if they had. I highly encourage folks to find physiatrist in their area if they have them. The rest is speculation. I think the question of just what exactly is ME/CFS is going to come up more and more. Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. I cried for you when I watched Unwell, and now Im thrilled to cry tears of joy for your recovery. She had put off having this surgery until after the promotion from "Unrest" was over. The teachers go through a rigorous 3 year training (post BA). amzn_assoc_default_search_key = "";
Sun 22 Oct 2017 03.00 EDT Last modified on Wed 21 Mar 2018 19.49 EDT. (Unpublished data.) Hi Cort- I cant keep up with all the reading around this issue so I might have missed this, but will their case reports be published? nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! For example, I found out that I have: sickle cell trait Cort, your question is a very good one about is CCI an autoimmune consequence. What an unbelievable relief that must be. So I learned to go back to the basics each time that happened. Happiness that someone who has been so ill may no longer be suffering. He did also say the Royal Free outbreak he documented as he was a physician there when it happened seemed to resemble previous documented atypical polymyelitsis outbreaks. The larger bugbear for me, however, is the issue of money. I am improving on electrolytes, high-salt diet, ldn, lauricidin, and several other treatments, but its been a long, exhausting, expensive, and excruciating journey which will probably continue for the rest of my life. Im luckily rather immune to that. Hope the ideas may help you in your recovery. Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case. This would explain why some people recover on the vegan diet or by juicing fasts or by mega doses of probiotics or by the grain free, dairy free paleo diet or the leaky gut diet, AIP diet or via the Perrin Technique. My mast cell activation syndrome (MCAS) has improved significantly, too. These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. 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. In 2017 I was found to have two antibodies, Jo-1 and Ro52 and diagnosed with Antisynthetase Syndrome (ILD with dermatomyositis) and Sjogrens Syndrome. 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. Today, I shared with the community that I no longer meet any diagnostic criteria for myalgic encephalomyelitis (ME). Apparently she had the surgery here and then went to Dr. Bolonesse (sic) in Europe for followup surgeries which failed. 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. They think, Plenty of pectus patients do not have ME, so pectus does not play a role in this. Hip alluded to that possibility. It !must! I also use Lipid Replacement Therapy using an organic sunflower lecithin powder. igG food sensitivities (many, including unexpected ones) Thanks for the comment. 1946 - Benjamn Brea, Spanish-Venezuelan saxophonist, clarinet player, and conductor . So this makes me wonder if Jeff or Jen showed signs of MCD from the beginning. This illness is so confusing. It all comes to late. 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! Jennifer Brea, Counselor, Lyndhurst, NJ, 07071, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. My insurance is through the Healthcare Marketplace (ACA), and Im very grateful to have it, as I was uninsurable prior to the ACA, being self-employed with pre-existing conditions. Thanks. amzn_assoc_width = 265;
We worked with the best in the field. I have read many stories on my EDS forum about this problem of a missed diagnosis. Are a subset of us members of a lost tribe? Instead my doctor sent me to PT and it helped.for awhile. try and activate the guts defenses to the optimal extend in order to even have a change for the body to wait out the danger. 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). Neither could have pointed to their head/neck area as a likely cause of their illness. Yet she is 8 of 9 on Beighton and so am I. I guess what concerns me about this is the pursuit of these diagnoses if you get one (I didnt and my daughter has 2.. we have yet to pursue stenosis in veins in brain because we completely crashed from all this). I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. Later on its harder to find them as they hide away in tissues eg brain. What is very different about the Ayurvedic training and Western Medical Doctor, is as you alluded to calling a symptom or collection of symptoms a definitive disease. Thatll kill you within days. ME/CFS, fibromyalgia, and long COVID blogs here. So what if our bodies were not in hibernation but rather in something I would call pro-active hibernation? What was cloudy yesterday may become clear today. Sorry for the delay I changed this: Jeff reported that, for most of his ME/CFS, his vague headaches and neck symptoms provided no clues that his head and neck. They have a specific focus on the neck. In 2014 I went to Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in every category. Congratulations again and good luck on your continued recovery:) Your story is really helping move this aspect of ME/CFS forward. So sorry to hear that Deb. Even with good neurosurgeons surgery is often a crude solution for something that may have an elegant molecular solution in the future . I also wonder if the long term bed rest could contribute to ligament laxity (?). Its been used to treat whiplash for years and has been used in EDS but is not well studied. Socould my POTs, sleep problems, stomach pain and bloating, and fatigue have been due to a neck injury?? Don't miss another one. By 2012, I progressively lost the ability to read, think, or walk. Although its painful to take in, its important for patients to hear and read about patients, like Jen and like me, who have recovered in different ways. Thanks for sharing this Cort. Again happy for someone to elaborate if they know. I can work now. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. Julia brings to us 20 years of experience in the nonprofit sector. Once diagnosed with severe pyroluria I started supplementation and had very quick results. Most neurosurgeons arent trained to recognize craniocervical instability, and finding an imaging facility that does the right kind of scans can take time. Glad she is feeling better but the vast majority of CFS / ME patients do not have this and some have died in this surgery. I doubt so. I also, at the age of 18ish, was involved in not one but two car accidentsone from behind and one from the side. 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). We will work together . 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. The interview includes a particular good discussion of the doctor and the decision to have the surgery. His tour was at least factually backed and supported by many state and national advocates with whom he worked plus ME/CFS Australia Ltd who provided him with a thorough briefing on the situation here and key influencers.. Neither could have pointed to their head/neck area as a likely cause of their illness. Its so unrealistic for the rest of us to think that well get any help in our lifetimes. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. One of the key side effects, apparently, of diphenhydramine is sleepiness. For the first seven years of illness, I had no symptoms I associated with my neck. I existed within my own bed, within my own mind, playing with ideas in a race against time. But i am very happy for her . I was told I had anterior osteophytes on my cervical spine along with arthritis. Every bad turn this disease gave me went hand in hand with randomly losing certain factual memories and certain abilities, both mental and motoric. You never know! . She now helps lead a neurosurgery practice. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. One day, she spiked a 104-degree fever and, after 10 days of dizziness, sweats, chills, and soreness, she "stopped being able to speak or think," she says. The saddest thing is how the healthcare system didnt help at all. I am still amazed each morning when I wake up symptom free, and I marvel at how much and what I am capable of doing with only normal healthy responses. If she had craniocervical instability (or any other variation of Ehlers-Danlos Syndrome) and that explained most all of her symptoms it was not MECFS and never was. Jane Colby of UK ME childrens charity, Tymes Trust tweeted just the other day the UK MRC some years ago dismissed her proposal to build on Dr Betty Dowsetts work (Bryon Hydes too) and that the infecting viruses in ME could be identified, given the will There was no will and they didnt want to know. 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. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? Not sure where to go from here. 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. Olathe Health Integrity Spine Surgery Doctors Building 1 20375 W. 151st St., Suite 105 Olathe , KS 66061 913-355-8100 913-303-5510 Hours of Operation Monday - Friday: I had severe post-viral myalgic encephalomyelitis (ME). For more info call me at 650-868-0603, Hi! I sleep much more better, not perfect, but fine most of the nights. She was recruited to the faculty of the Department of Neurosurgery, Institute of Neurological Sciences, in Glasgow, where she remains to this day, and now has British and Canadian citizenship. 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. All possibilities to heal should be pursued. Be well! Sorry, Issie, not Issue. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. Jennifer Brea I do not believe was ever diagnosed with EDS. I hope thats so! I immediately recognized her CFS the first time I saw her by the way she sits. 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. Hi Cort, my head is LOWER than my feet in my bed. Lets have respect for those who have suffered and not discredit them or what they experienced when they recover. Thats despite that I am a mild/moderate patient who can walk 2 miles on a good day as long as I incorporate enough breaks. 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. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. Thank you for using these stories to educate and to keep hope afloat. The money issue raises its head no surprise there really. I didnt think it would be long before some people proclaimed that Jenn had never had it in the first place, even though she was satisfied all the relevant criteria. What is it that makes people not want to believe recovery is possible? One of these docs talked to me about people like us having angry or unhappy brains and he can do procedure on someone and they have major improvement and on another and no major improvement. So weve got a small spinal fluid pump / mixer which may be a good thing. 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. However, these policies are limited to in-network providers and facilities. @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. I have had ME for almost 14 years but am not bed bound. : Jennifer Brea, from her Medium.com blogs Thyroid Surgery And Aftermath In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. This whole bloody process has shown me how much medicine is just belief. Fast forward to aprox. Jennifer Brea is an American documentary filmmaker and activist. Merck reported that symptom improvement during a procedure called Invasive Cervical Traction (ICT) where ones head is pulled upward by a pulley system can help diagnose CCI/AAI. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. 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. She has major problems with neck instability, swallowing difficulties, vertigo, nausea, nystagmus, being over whelmed with thoughts, anxiety, fear, She suffered a lot of trauma from the medical system here in New Zealand. The cardiologist and the neurosurgeon both said my symptoms could not be explained by these finding and in October of 2008 I was diagnosed with CFS. 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. Congratulations and thank you for your work !!!! It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. Is a powerful reminder not to give up and to push for help. Alsocheck out the website, Hormones Matters, and all the articles about Thiamine Deficiency. Jen I just really hope it works, and not only longterm, but for the rest of your life. Not knowing the problem at hand might be even more complex then anticipated doesnt magically makes the problem easier to solve. She saw a world renown surgeon and we are very happy with the surgery. 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. It was major for me discovering I need to fight inflammatory issues, as I have always been thin and didnt understand it is not related with weight. Its now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries. Jen has said she believes that mold exposure in Beijing may have triggered her MCAS which may have caused collagen degradation which may have led to the CCI the CCI can also trigger mast cells and immune dysregulation as well as POTS, hEDS, etc. Maybe not probable but at least possible. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! Maybe this piece of information fits into Jennifers recovery story: There is someone on HR forum who has a skeleton structural problem and believes the pelvis takes a key role into this disease. It was 2017. I am glad for Jen Brea but hope it lasts. It could also explain why a certain type of back surgery (i.e. Hi Matthias, this is not something i have experienced. I didnt get anywhere. I am a research Scientist that have had one success, of treating a person who had been ill with ME/CFS , Fibromyalgia , Depression, and associated sleep without feeling refreshed, since 1990s. Havent we been through this before? I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. That procedure sounds about as spine-tinglingly scary as anything I can imagine. Our doctor has a high success rate with this for people with our profile which includes MCAD, POTS_OI and EDS type 3 with autoimmune profile Id be happy feeling better at this point. I think the reason that I have problems emotionally with recovery stories is the same as the reason I cant watch inspirational stories on the news. Certainly her CCI/AAI diagnosis is now the correct one but its interesting that neither her nor Jeff fit a typical CCI/AAI diagnosis either. I had a urine count of 27.5 so I was severe. Maybe they thought cfs was related to these outbreaks: https://www.betterhealthguy.com/episode98, I have found the article below very important and relevant to the topic. Indeed, Jen Breas recovery is wonderful news. He said he didnt have time. Rheumatoid arthritis is a main cause of CCI. I agree- its very important! I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. With moderate brain fog, in a way it seems a cruel joke that I am the one who has to research and make sense of these things. Amy, not knowing truly more about your situation, you did not have the correct type of imaging.
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