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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. J

    Tracking CCI / AAI MRI & Treatment outcomes

    I don’t think we understand all this well enough to know. It’s certainly possible you can have both instability and a virus in your brain. Jeff and I didn’t “resolve” anything pre-surgery, though. Our pathologies were what was causing all/most of our symptoms.
  2. J

    Tracking CCI / AAI MRI & Treatment outcomes

    What was cleared up before surgery?
  3. J

    Tracking CCI / AAI MRI & Treatment outcomes

    Several people have had full remission but you are right, it requires diagnosing and treating...everything. And a lot of PT.
  4. J

    High Prevalence of Perineural Cysts in Patients with Fibromyalgia and Chronic Fatigue Syndrome

    FWIW, I have Tarlov cysts but they are asymptomatic. I also had excess fluid in my optic nerve sheath. Subjectively, the excess optic nerve sheath fluid has definitely improved or resolved. I’d be curious to see if the Tarlov cysts are still present or have resolved, also.
  5. J

    High Prevalence of Perineural Cysts in Patients with Fibromyalgia and Chronic Fatigue Syndrome

    Here’s my take on the significance: Tarlov cysts are “dilated nerve root sheaths filled with cerebrospinal fluid (CSF),” and so are somewhat analogous to the observation of excess fluid in the optic nerve sheath, found by Bragee, et. al in their paper on ME/CFS, hypermobility, and intracranial...
  6. J

    High Prevalence of Perineural Cysts in Patients with Fibromyalgia and Chronic Fatigue Syndrome

    Paper: https://academic.oup.com/painmedicine/advance-article-abstract/doi/10.1093/pm/pnaa410/6015822 Abstract Objective Pain in fibromyalgia (FM) and chronic fatigue syndrome (CFS) is assumed to originate from central sensitization. Perineural cysts or Tarlov cysts (TCs) are nerve root...
    • JenB
    • Thread
    • https://forums.phoenixrising.me/attachments/tarlovcyst-jpg.44043/ perineural cysts
    • Replies: 4
    • Forum: Latest ME/CFS Research
  7. J

    CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

    I would agree with this. In many ways, I think tethered cord is just as if not more important than CCI. So far, syringomyelia seems to be quite rare in the ME community. I have only seen maybe one or two cases, both with obvious hEDS. CCI and/or AAI, tethered cord, cervical stenosis, Chiari and...
  8. J

    Involvement of Cervical Muscle Lesions and Autonomic Nervous System in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

    I’ve actually starting doing this, inspired by the time I lived/traveled across Africa. I have a 6 pound slam ball that is too light to really be used as a slam ball. I balance it on my head (holding it with one hand) and practice walking around, picking up/carrying things. It elongates my...
  9. J

    Involvement of Cervical Muscle Lesions and Autonomic Nervous System in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

    Potentially. People with unstable joints due to connective tissue laxity often “guard” those joints via muscle stiffness/rigidity. However, it does not necessarily follow that relaxing the muscles can make you feel better. Often times, they are spasming for a reason. However, if they spasm...
  10. J

    Understanding jugular venous outflow disturbance

    It’s possible changing your posture could create a little more room there, and thus reduce symptoms, but it entirely depends on the architecture/morphology of that area, for you personally. In this respect, I am not sure that more research would be very helpful here as compared to assessments...
  11. J

    Understanding jugular venous outflow disturbance

    Having had “internal jugular vein compression” due to my omohyoid muscles, a problem that developed after my craniocervical fusion and tethered cord release surgeries, I can say for me personally that the symptoms were very different from the symptoms due to CCI and TC, let alone ME. However...
  12. J

    Tethered cord syndrome

    @RobeAnJa Vitamin C: https://me-pedia.org/wiki/Vitamin_C Copper: https://me-pedia.org/wiki/Copper Collagen: https://me-pedia.org/wiki/Collagen (I have a “multi-collagen peptide powder” that I put in my coffee and oatmeal...anywhere I can sneak it). Bone broth is also great but can be hard to...
  13. J

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    No, that’s not what happened. After the initial post-op recovery period (~ 3-6 months) I felt really well and have been getting better every since. I had some problems last year with spinal fluid leaks, which has resolved. I was sick with COVID-19 for three month and put myself on fairly strict...
  14. J

    I have all the symptoms of CCI but test comes back inconclusive

    You definitely cannot trust radiology reports as they often don’t look for CCI/AAI, don’t take measurements, or if they do, don’t do them properly. You need to consult with an expert neurosurgeon and get, ideally, two opinions. And yes, a cervical MRI can be normal. There are sooooo many...
  15. J

    Tethered cord syndrome

    Re: CCI/AAI, I/we always definitely recommend multiple opinions. Each surgeon uses a different diagnostic process and each surgeon misses a small but significant number of cases. There is a lot of nuance to the sensitivity and specificity of each diagnostic. Re: recovery time, I hope...
  16. J

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    FWIW I disagree that there are surgeons “all over the country” for most of these diagnoses. Craniocervical fusion in non-traumatic cases and adult, occult tethered cord syndrome are still the bleeding edge, and there is a small number of people I would trust to diagnose them, much less operate...
  17. J

    #MEspine hashtag

    Facebook is where most of the discussion on these diagnoses happen. In addition to the group I admin, Facebook has many different groups dedicated to each separate diagnosis. Some of these groups have deep archives stretching 10+ years back on surgical outcomes, experiences with different...
  18. J

    Tethered cord syndrome

    I think it's because that's generally when the patient starts being more active. The combination of being upright/walking more, and of your posture changing due to the CCF, puts more and more constant tensions on the cord. At the end of this post, I talk about why walking as my tethered cord...
  19. J

    Tethered cord syndrome

    Also can I ask: did you definitely rule out CCI and AAI? On what levels did you have the ACDF surgery?
  20. J

    Tethered cord syndrome

    Emily really sums up something that has become a mantra of mine, but that I never had words for: “When you see the whole cage, you can find its door.”
  21. J

    Tethered cord syndrome

    Are you in any of the tethered cord groups on FB? That may help allay some of your fears. I don’t know about ACDF but with skull-C2 fusions, if people have TC, then the fusion runs a high risk of making it worse. Most CCI+TC people really need both surgeries. I don’t know much about your case...
  22. J

    Tethered cord syndrome

    You should ask Julie Rehmeyer about it. I did both craniocervical fusion and tethered cord release surgeries at the same time, so it's hard for me to distinguish recovery from one v. the other. However, tethered cord release seems to be 10x easier to recover from than a craniocervical fusion...
  23. J

    Tethered cord syndrome

    Google says 3-8% of the population On Facebook, I polled the two neurosurgical groups I admin. numbers were ~40-48%. Twitter below (although here, people had less guidance on what a sacral dimple was. On FB, everyone was posting photos of their butts!)
  24. J

    Tethered cord syndrome

    @Hip For symptoms, etc. you should really watch the Petra Klinge talk and look at the Twitter threads I posted in my first post. The symptoms in the article you link to are not exhaustive or even necessary. Her talk has a table that includes 113 patients with occult tethered cord syndrome and...
  25. J

    Tethered cord syndrome

    YES (possibly quite)
  26. J

    List of ME/CFS Recovery and Improvement Stories

    Danielle Ayers:
  27. J

    List of ME/CFS Recovery and Improvement Stories

    You may need to ask clarifying questions, but can I post people who have had surgery’s tweets here. Here is one, remission: Improvement: I am encouraging people on FB to post to the #MEspine hashtag on Twitter so more stories can be public.
  28. J

    Tethered cord syndrome

    I’m glad this connects. My sacral dimple is in my butt crack. I’ve always felt it but didn’t know it was abnormal! Dr. B focuses more on CCI/AAI, but also diagnoses tethered cord. For a tethered cord first (or second) opinion, Petra Klinge is the top expert.
  29. J

    #MEspine hashtag

    Just FYI, I’ve started a new hashtag on Twitter, #MEspine: https://twitter.com/hashtag/MESpine I know a lot of folks on PR aren’t on Facebook, where a lot of the EDS, tethered cord, Chiari, CCI/AAI, etc. groups are. Hopefully this will make it easier to follow research and patient stories. Most...
  30. J

    Tethered cord syndrome

    @Hip I don’t have strong ideas re: how this should be incorporated into the survey, but I think it should. Running a sacral dimple poll here: