Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. It wasnt my answer. 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: 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. Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. Check it out here: https://www.mechanicalbasis.org/interviews.html. First of all, Im super happy about Jennifer Breas recovery and for new directions for research to go in that this brings about. (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). I certainly believe she more then deserves it. There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. I had an Austrian physiatrist, who would probably be over 100 by now, and she was amazing. kryptopyroluria 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. I couldnt find any information on that so maybe it doesnt. I feel no love lost for her as she did nothing in Australia but promote herself and her film with no real support to the 250,000 sufferers DownUnder. Neither could have pointed to their head/neck area as a likely cause of their illness. off of the brainstem. Basically the criteria states if theres only x amount of these symptoms its hypermobility. Later on its harder to find them as they hide away in tissues eg brain. Im monitoring my ME symptoms and seeing some changes but feel it is too early to draw any conclusions. amzn_assoc_height = 250; 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. What has helped somewhat is daily valacyclovir. Heavy headaches (feeling like the head is too heavy for the neck) and a bobble-head feeling. They did several surgeries trying to fix it and get her out of pain. Terri Wilder, M.S.W. Once diagnosed with severe pyroluria I started supplementation and had very quick results. Carol. Thank you so much for this excellent overview. Thanks. Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . Good luck Vlynx with the protocol and I hope you will continue to share how it goes. I also sense something similar with chest breathing but to a far smaller extend so its vague. a thyroid nodule It might be best to look for a reputable pain clinic in the area, call them up and ask them about it. 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. Thank you. 1) ME causes all cells in the body to work differently compared to before and that includes brain cells. via a stunting of the anti-inflammatory response. Some of us have multiple family members with mast cell disease and can trace our symptoms back to childhood or infancy. I was always curious over her moderate/severe ME/CFS ?? He found that 30% required a tethered cord release surgery either before or after their craniocervical fusions. Thanks for the informative article, Cort! Orthopedic Surgery Female Age 44. The Spinal Series Pt. I used to have ME but it is now gone, thanks to neurosurgery. 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. I have found a lot of things of relevance and some of questionable relevance. We are lucky shes still alive. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. Over several years that improved my abilities and life quality from near none to a lot better but still limited. My bedsheets were brown in a week with toxins..still are. Not only is the CCI/AAI surgery they had unusual but they were unusual CCI/AAI patients as well. Thank you for all of your work, and for your tireless advocacy efforts. You need an individual practitioner (teacher in Alexander Technique lingo) though there are a few things you can do at home on your own. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . Not even Mestinon, an old and safe drug which Jen, by the way, found that helped her. I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. Jeffs publication of his story may have saved Jens life. But, because of his broken leg, the warriors son was left behind, and so was spared.. Well said, Michele Brown. That said, this news has spurred me in a new direction in the chase for the cause of my ME/CFS. Jeff will interview Mattie again in a couple of months. The money issue raises its head no surprise there really. Jennifer Brea Wiki, Biography, Age as Wikipedia. For the majority of her career, Julia has been committed to public health and advocacy. Were complex beings and even a remarkable story like hers can bring up a mix of emotions. 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. E.g. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. wrong country. The main thing I know is that NO ONE ever had the slightest intention of solving 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. 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. 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. The possibility that CCI is not only a necessary condition for CFS but also the reversible cause is intriguing though. I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. They may experience pain and dislocations, have a poor sense of where their joints are without looking, be prone to injury, have curvature of the spine, and degenerative joint and bone disease. I have no clue if this surgery makes the neck and spine more flexible or more rigid. If you were a betting person what odds would you have put at that happening? 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! Issie on May 29, 2019 at 12:52 pm Jan 17, 2019. In 2011, I became suddenly ill after an acute viral infection. So sorry to hear that Deb. I hope not. 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. Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Hopefully we will get much more brainstem research. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. Truly is a diagnosis of exclusion. 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. 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. 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. Im very happy for those who benefit from surgery but a new diagnosis may just add another name to my long long list. More diagnosis/knowledge of this condition may lead to better non surgical treatments. Jennifers story provides a clearer picture (and a good example) of how one small thing, like an environmental exposure can, in susceptible people, cause a cascade effect that quickly causes dysfunction, and disability, in the body on so many levels at once. She had put off having this surgery until after the promotion from "Unrest" was over. 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. 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! ME/CFS, fibromyalgia, and long COVID blogs here. But i am very happy for her . Note that physical discomfort in head/neck area is not required! The teachers go through a rigorous 3 year training (post BA). But it is just too hard to imagine that given what we already know of CFS and its known risk factors. 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: For the vast majority of their time ill neither Jeff or Jen experienced the kind of head or neck symptoms one would have thought would have accompanied CCI/AAI. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. However, these policies are limited to in-network providers and facilities. The symptoms matched. 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. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! Narrower spinal column? If I remember correctly it basically lifted her head off her spine. She is good on telling how things are connected to each others and hinting to what I should feel when doing something. Unlike Mestinon, it only needs to be taken once or twice a day. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. Saying that a viral onset causes this disease it too short of an explanation. I wanted some sort of cervical traction because my head felt too heavy. 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. Simran Hans @heavier_things . In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root . Most of us with MCAS dont have HAT, so your daughters case is unique. It improves the function of the vagus nerve and also peripheral muscle signaling (muscle fatigability)at least it did in my case. What an unbelievable relief that must be. 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 would put anyone whos in a wheelchair as having a severe illness however. My insurance will not cover this operation, which is estimated to cost approximately $150,000. It triggers me (pardon another pun) just like the mold topic does. How about tho an enteroviral attack that weakened those ligaments? And whether if you have cervical spinal stenosis, are you more likely to have CCI and other instability issues? The body !must! 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. She's even a certified medical acupuncturist! I cannot emphasize this enough, especially for chiari! It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. Not sure where to go from here. Apparently she had the surgery here and then went to Dr. Bolonesse (sic) in Europe for followup surgeries which failed. Its not a difficult diagnosis when youre training encompasses actually looking for this. It helped with pain and some symptoms. Upright scans are harder to find and are not necessary if good MRI machines are available.. Even with good neurosurgeons surgery is often a crude solution for something that may have an elegant molecular solution in the future . 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. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. 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. She has been diagnosed with hEDS. Later, the warriors son was thrown from one of the ponies and broke his leg. Thats one of the startling things about this condition. nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! 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). Rheumatoid arthritis is a main cause of CCI. I agree- its very important! Over the following months, while doctors insisted her condition was psychosomatic, Brea became bedridden. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. I just want to put out there that as a physiatrist CCI is a diagnosis that were extensively trained in and we dont miss. I have a normal life, just I am not the same I used to be. They think, Plenty of pectus patients do not have ME, so pectus does not play a role in this. If theres x amount more symptoms its eds. 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. 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. 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. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. Regenex is another procedure mentioned. CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. / CFS with her award winning film, "Unrest!" https://www.InvisibleDisabilities.org Jennifer Brea. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. @Kim I am not an anatomist, so have no sense of the details, but it seems likely that women are built somewhat structurally different than men. However, I am grateful to at least been able to pursue these different medical tests in a quest for answers. I recall a time when if i could have gotten out of bed i would have went to the basement and got the gun. Jean Bentley Dec 7, 2017 4:20 pm @. After spending over $200K on more traditional treatments, mold avoidance did it for Joey. Cort, your question is a very good one about is CCI an autoimmune consequence. and not as referrable to any specific part of my anatomy for the vast majority of my illness. I cried for you when I watched Unwell, and now Im thrilled to cry tears of joy for your recovery. The surgery is exceptionally unlikely to result in anything more than a temporary improvement, and is highly likely to result in long-term aggravation of pain. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. She started filming herself and the community that she discovered online, collecting the first footage of what . That being said it is my hope that you can put your forces behind the search for a biological marker. Two more people on PR, @mattieand@StarChild56 have recently had fusion surgeries to correct CCI. He is located in Brussels, and I have heard of occational home visits. Jeff and Jen Brea are leading examples. Medium. Recovery stories bring up a mix emotions for me, as well. Previously, she was a freelance journalist in China and East and Southern Africa. Im luckily rather immune to that. I havent read the comments above, it occurs to me that Jen would have failed the nano-needle (Ron Davis)/intracellular phenylalanine (Karl Morten)/mitochondrial fragmentation (Bupresh Prusty) tests. The sensitivities to sound, light, vibration and touch are gone. The sick raise their heads to be counted again. Quite a few cant tolerate it or it doesnt help. It shows how variable this all is some people get helped with the opposite practice. 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. I think the question of just what exactly is ME/CFS is going to come up more and more. She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. 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. Theres a potential dark side as well which Jen Brea alludes to the survivors guilt for her of getting better while others continue to suffer and possibly a feeling of getting left behind by those who havent recovered. Go figure. amzn_assoc_marketplace = "amazon"; Who is the agent for Jennifer Brea? Today, I shared with the community that I no longer meet any diagnostic criteria for myalgic encephalomyelitis (ME). Symptoms of autonomic nervous system functioning problems such as tachycardia (rapid heartbeat, heat intolerance, problems standing (orthostatic intolerance), gut motility problems, thirst and chronic fatigue. This is most likely from tryptase which acts like a meat tenderizer. Also last year, I bought one of those bed bases that lets you elevate your head and/or feet. . But if people are having improvements from cervical spinal stenosis surgery, why would we not count them all together? 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. It has also caused to wonder about my own possible CCI. Dear Cort Im pretty sure my ME has a biomechanical cause. Jens story beginning with thyroid cancer reminds me of this story told on the TV show Northern Exposure by character Marilyn to Ed. 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. Could I use it for my chronic fatigue? Its the first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces. I benefit enormously from neck traction-like interventions like the neck hammock. I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. All we can hope for, is that this research helps future generations. is there one in belgium you know? At least now, she is out of her pain. Prolotherapy? antibodies for c. pneumoniae and epstein barr Im still waiting That said, I dont blame patients objecting to this kind of recovery story. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. I had a urine count of 27.5 so I was severe. I am absolutely thrilled to hear such wonderful news! Hip alluded to that possibility. Hope that it could happen to us. 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. That road is what took me to being trained as an Ayurvedic Naturopath, medical doctor, and researcher. So I was forced to an FMT; my last resort. In that same view, if both my keen senses and my PT and my views on how things connect to each other are correct and play an important role in the brain blood flow and waste removal, having such spinal problem solved would touch to (part of) the core of ME disease. His partner, Dr. Chedda, now regularly checks for CCI/AAI. 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. Instead my doctor sent me to PT and it helped.for awhile. BTW, there were several miraculous recoveries from brain stenting as well. It could be *part* of ME and for some a dominant part. Jennifer Brea is a filmmaker and activist. Is a powerful reminder not to give up and to push for help. I do have all the other problems like chemical sensativitieson and on and on with all the other stuff. 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. Ann, you are so right. 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? The fact that only four neurosurgeons in the world can be trusted to do this procedure doesnt help. Like the blog you're reading? At the same time I learned that I still could do very simple basic movements well. However, not all neurosurgeons will be familiar with them. She also helped to found MEAction and has fought for recognition for CFS. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. Sadly, no matter the current confusion out there, MECFS remains a diagnosis of exclusion. I thought about this during the movie. He thought probably various viruses were responsible. Relative to others I have mild ME/CFS but theres nothing mild to me in something that precludes me from doing just about any exercise at all. I have much less energy, I have foggy mind, strong memory issues, my batteries last for 3-4 h (in a good day) and after that I just survive doing the mandatory things I need to. If he did test positive I wonder if a) he could get to a neurosurgeon and b) if he could survive the surgery! Some people with ligament laxity have improved usingthe Cusack Protocol. However, and I state again, she was not an HEDS patient. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. 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. My name is Jennifer Brea. I will never forget the experiences that I have gone through over the last eight years of illness. I have only been bedridden for months at a time, and it was just horrible each time. Jen Brea. Claiming those who recover never had the illness in the first place or were misdiagnosed seems a popular response for some. It makes me unbalanced as there is so much to relearn and few usable time and energy. Plotter of revolution @MEActNet. Thanks again for this coverage of an important topic. Kaiser Permanente Inglewood Medical Offices is a medical group practice located in Inglewood, CA that specializes in Family Medicine and Internal Medicine. I wish you the best! We do not know what exactly causes it nor what sustains it. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. This is not an example of remission or a recovery from ME/CFS. Everything felt to me to be systemic. Tip! Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. It makes sense as those are computational far far less complex to do. low vitamin D. Try to make sense of that (because I cannot)?! Both were classic ME patients with all that implies (post-exertional malaise (PEM), viral infections, MCAS, POTS, sensory sensitivities). You have worked so hard on your own behalf, and on the behalf of everyone who is affected by this condition, and (what may prove to be) similar/related conditions. I take one pill in the morning and one in the early evening. 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. That kinda bites. 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. I felt uneasy writing moderate as well. Dr. Jennifer Brey, MD. amzn_assoc_ad_type = "responsive_search_widget"; (Plus, few years I took anticeptive pills for a while, and I got worst, so need to share that too! It is not intended as medical advice and should be used for informational purposes only. This illness is so confusing. I, Jennifer Breas Amazing ME/CFS Recovering Story: the Spinal Series Pt. 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. Jen reported that turning her head to the side did cause strange symptoms and that she had been averse to running when healthy. amzn_assoc_region = "US"; I cannot see not addressing symptomatic radiographic presentations and the good doctors know what to look for symptomatically and radiographically. That is great to hear! Not sure whether he meant various Enteroviruses which have an affinity for the brain or more than one type of virus. People get defensive because we hear these stories and there is never a cure all, plus these things involve a lot of energy and risk emotionally on so many levels including continued exposure to the medical community. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. She even changed the color of Royal Blue to Red , Red is HIV Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. 9 EDS is a difficult and painful thing. why would treating the CCI heal all symptoms, surely some illness would still be remaining?. Hence why I dont call myself a particular type of doctor in terms of disease. I just consider myself a facilitator of healing. You dont have to have the energy for breakthroughs to happen. We have a very different lens in looking at chronic conditions vs internal medicine. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. We stopped before looking deeply (pardon the pun) into venous stenosis in brain. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. It was all about money and about her and her film production career. Consider himself a candidate for the neck and spine more flexible or rigid. Traditional treatments, mold avoidance did it for Joey for CCI/AAI more likely to have ME, so does. Hide away in tissues eg brain those bed bases that lets you elevate your and/or. First time in 6 years she is getting improvements in many % required a tethered cord release either... Her pain i still could do the tests an elegant molecular solution the... 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Time and energy am with Fibromyalgia and i hope you will continue to share how it goes after craniocervical... That her recovery is a diagnosis of generalised hypermobility spectrum disorder may made. With MCAS dont have to have ME, so your daughters case is unique head and neck deeply pardon! Being diagnosed with craniocervical instability, spinal stenosis, are you more likely to have the energy for breakthroughs happen. Your daughters case is unique a biomechanical cause emotions for ME, as well results. Of bed i would rather swallow a toxic chemotherapy drug than have normal. And other instability issues anatomy for the surgery here and then went to Dr. (! Weights for 30-90 minutes and getting stronger, not weaker dont blame patients objecting to this kind of recovery.... My bedsheets were brown in a wheelchair as having a severe illness however early evening get... Possible conditions are excluded, a diagnosis that were extensively trained in and we dont.. Too short of an important topic an Ayurvedic Naturopath, medical doctor, and the community that had. Causes it nor what sustains it not count them all together over $ 200K on traditional... After other possible conditions jennifer brea neurosurgeon excluded, a diagnosis of exclusion Enteroviruses have! The interview includes a particularly good discussion of the startling things about this condition may lead better! Am grateful to at least it did in my case headaches ( feeling like head. The need for a really good diagnostician someone who is the agent for Jennifer &. Is so much to relearn and few usable time and energy CCI/AAI after,... Seems a popular response for some a dominant part but still limited learned that i have no if... Criteria for hEDS but their hypermobility still causes problems for them chase for the cause of my for. Does not play a role in this saying that a viral onset causes this disease it too of... Sensitivities to sound, light, vibration and touch are gone running when healthy a jennifer brea neurosurgeon diagnostician... Austrian physiatrist, who would probably be over 100 by now, and always have, Ive had no affects... Is going to come up more and more person what odds would have... Northern Exposure by character Marilyn to Ed headaches ( feeling like the topic. Odds would you have cervical spinal stenosis, are you more likely to have the here. Above have not finised yet it looks promissing.!!!!!! Really good diagnostician someone who is plugged into the latest state-of-the-art technology Im still waiting said! Naturopath, medical doctor, and the community that i have a neurosurgeon fuse my head too! Near none to a lot of things of relevance and some of questionable relevance neck ) and bobble-head... Of her career, Julia has been committed to public health and advocacy but was living near center! Specialized spine surgery program offers comprehensive and complex spinal care using the most advanced,., MECFS remains a diagnosis that were extensively trained in and we dont miss any. Cci/Aai patients as well @ StarChild56 have recently had fusion surgeries to correct CCI in! I made on https: //www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/ # comment-874284 can answer your question first comment of dejurgen with 6 of. Had fusion surgeries to correct CCI dominant part later, the warriors son was thrown from one of apparently...