We could not avoid the unsafe people during this process that took us at least 3 years and only one surgery accomplished. Plus, other less invasive treatment options are available (see below). It started when I learned that bigger of these movements could help turn down a very rapid hart beat in the late night to a normal one. He thought probably various viruses were responsible. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. But people should have support and pace through these studies and surgeries. Colby said they could find the suspected neurotropic viruses implicated in ME by this tried and tested method if samples were taken early in the illness but its no longer done. Many people have viral infections but never develop our disease. I hope thats so! I went from 40% functioning to 60%. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. So weve got a small spinal fluid pump / mixer which may be a good thing. As long as we dont know what causes and sustains our disease we cant say she never had our disease. 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. Almost immediately I began feeling with more energy, clarity of mind and happiness. That helps removing waste out of the brain. Hi Cort, my head is LOWER than my feet in my bed. So at the end of all this, despite having extremely high IgG and a very low NK count, I need to eliminate the possibility of CCI/AAI. It took a particularly astute practitioner to diagnose the heavy metal poisoning, that put one severely ill patient on the road to recovery. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. 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. The result of toxin build-up manifests as CFS/ME symptoms. amzn_assoc_placement = ""; Jennifer next went to Scotland to pursue fellowship training in general neurosurgery, complex spinal surgery and paediatric neurosurgery (1998-2000). * I should note I am not sure Ramsey himself described ME as an atypical poliomyelitis (believe Dowsett did and Hyde definitely did), perhaps someone if reading this can confirm, but he did call it was an illness triggered by a virus. Dr Perrins therapy is a specific type of massage The Perrin Technique which helps to drain toxins from the spine and brain. Jens CCI surgery could be just another coincidence. Even if you dont have CCI/AAI, the search for it may help uncover other problems. I had to write about my feelings for an hour or so yesterday in order to help process it was definitely a case of mixed emotions. The symptoms matched. It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. 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. Huperzine A caused tummy issues with me, as did mestinon. 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. Yet it did. I asked him how we could rely on the literature without documentation of case reports. In 2011, I became suddenly ill after an acute viral infection. She can bend her hand flat on her arm. Im luckily rather immune to that. 25 records for Jennifer Brea. Jen reported that turning her head to the side did cause strange symptoms and that she had been averse to running when healthy. 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. And whether if you have cervical spinal stenosis, are you more likely to have CCI and other instability issues? 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. What was cloudy yesterday may become clear today. Hibernation itself is a damaging process if the patient isnt doing a winter sleep like a squirrel. Who knows what will happen if the nanoneedle provides a diagnostic test? If he didnt write it up, how many others didnt either? Hope Jeff & Jen & other cases do get documented. Our disease is very diverse. It could also explain why a certain type of back surgery (i.e. Thanks. I have mild CFS, I work full time, but its tough. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. With all of us working together who knows what will happen? My daughter is in less pain but fluids helped in their way (less flu like mostly). Unlike Mestinon, it only needs to be taken once or twice a day. Brea, Jennifer (May 20, 2019). Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. interestingly, i was diagnosed as severe back in 93 but i had slow onset starting at the age of 20, then i complete blow up of my immune system in 93 and had to stop lifei have all the gut problems..all the brain fogall the other symptoms to go along with cfs. This line holds the long tail of the spinal fluid bag. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. He made a conscious effort to use his journalism background and reputation to arrange appointments with key Government decision makers. 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. 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. I think its a shame that folks with ME/CFS have been convinced that there is no cure or theres no hope. Jennifer Brea, Counselor, Lyndhurst, NJ, 07071, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. youve forgotten them or they are lost to you. Alexander Technique is big in the UK and the US, and probably Canada. All it took was a series of spinal surgeries done over several weeks about six months ago. At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. Neurosurgeon 1 episode, 2016 Juan Javier Cardenas . Different neurosurgeons will employ different scans. 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. I wish you the best! Confounding things I was also exposed to mold right around the same time (and I tested as mold susceptible). also people like her with plenty of money can access all treatment s. The top docs are only available to the rich, Im amazed people here cannot see that, the majority suffer and the rich can see any doctor. I am also copper zinc imbalanced. These are not symptoms that are easy to fake.. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. Its wonderful work you are doing, Cort! I myself had pectus, which was brushed off as a cosmetic issue. 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!) My daughter is still mentally recovering from the CCI and suboccipital craniectomy. Decades after falling ill it was corrected. During craniocervical fusion the skull is pulled upward and placed into the correct position, and the occipital bone of the skull is fused to the upper cervical vertebrae to hold the head in the correct position; i.e. It makes me unbalanced as there is so much to relearn and few usable time and energy. However, these policies are limited to in-network providers and facilities. Jeff will interview Mattie again in a couple of months. That was probably due to improving the flow of pooled blood in the legs to the hart. Today, I shared with the community that I no longer meet any diagnostic criteria for myalgic encephalomyelitis (ME). 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.). These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. 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. I wouldnt read too much into it till a study shows that CFS patients suffer from CCI more often than by chance and that CCI surgery relieves CFS by more than a chance. Interesting we did a blog on how raising the head of ones bed can help with sleep. This type of surgery is absolutely not an appropriate treatment for illnesses such as ME. A Fibromyalgia and Chronic Fatigue Syndrome Inquiry. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. Is it necessary to have headaches or neck pain to possibly have CCI or AAI? Jennifer Brea , , , (551) 295-8190 About Verified by Psychology Today As we grieve the loss of mobility, safety, predictability, and perhaps the loss of a family member, therapy may offer. Prior to her surgeries, Jen Brea was at her lowest point ever having trouble breathing, unable to speak or think at times yet six months later she is able to exercise. Some people with CCI also benefit from home neck traction devices. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! I found them after PT worsened by double cervical herniated discs, a few years ago. Ask me anything! It is time we become just as militant with those inside our community who refuse to accept the validity of recovery. Thanks Cort, for reporting on this and other stories of recovery. I am happy for Jeff and Jan! 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. I immediately recognized her CFS the first time I saw her by the way she sits. Jennifer Brea is an independent filmmaker based in Los Angeles. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. 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. All American Entertainment has successfully secured celebrity talent like Jennifer Brea for clients worldwide for more than 15 years. 1 2 43 Jennifer Brea @jenbrea Dec 8, 2021 So, its a matter of reducing the amount of nickel. Im about to have my first consultation with one of his associates this week. Later, the warriors son was thrown from one of the ponies and broke his leg. 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. This is another interesting bit of research that fits in with the above: I had 4 episodes of viral thyroiditis before I had it removed. Note that physical discomfort in head/neck area is not required! Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. Rheumatoid arthritis is a main cause of CCI. 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. Trying to move, work, think, speak while your body is in hibernation causes plenty of damage, metabolic waste, inflammation. 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. 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. Amy, if you have the possibility in your area, look into Alexander Technique. All things that are treatable, should be treated. They believe our cells go into a sort of hibernation, Dauer after an initial onset of the disease and try and wait the danger out. I, Jennifer Breas Amazing ME/CFS Recovering Story: the Spinal Series Pt. Not to mention the ability to take off of work. The surgery with a well respected neurosurgeon who does many of these surgeries helped with pain and some symptoms but did not help with CFS-ME. We worked with the best in the field. By 2012, I progressively lost the ability to read, think, or walk. While there are certainly cases of gradual recoveries using supplements, pacing, and mind/body practices, many of the recovery stories involve unusual, out-of-the-box treatments. I was diagnosed with CFS about a year ago, after several years of struggle. Can you make a correction to your article? 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 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. Thank god i couldnt get out of bed. At an attempt to throw it all at the wall and see what sticks.
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