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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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  1. S

    Tracking CCI / AAI MRI & Treatment outcomes

    I have been spending my on line time on a FB group and I have not been here often. Thank you for your update, I really appreciate it as I am sure many do. I have been considering how/when to update here...I have some major medical challenges (not caused by surgery & still glad I had it). I...
  2. S

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

    That is good news indeed :)
  3. S

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

    I'm sorry this response is so late. I have not been on in a long while. So it probably won't even matter but I don't recall much. Just lifting my chin when told to, and pulling it down when told to... Sorry to be both late & probably not helpful. It has now been well over a year since having...
  4. S

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

    Hello :) Nope not upright. Supine with flexion/extension.
  5. S

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

    I wonder how much one's neck size, particularly neck length - affect the meaning of the number calculated as the Grabbe-Oakes. I am very short and my neck is very, very short. If you were to compare my neck to a very tall person, there would be a huge difference. But even compared to others my...
  6. S

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

    Thank you :) makes sense. When I went to the post you kindly linked me to about normal, borderline and pathological, the part that talked about *I think BDI but maybe something else, where it is done while doing invasive cervical traction, and indicating vertical instability* - makes a lot of...
  7. S

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

    Thank you very much :) Going to go check it out now. The color differences I generally find helpful (green being in the normal range).
  8. S

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

    Another question that may not have any answer. Do we know what the average CXA, Grabbe-Oakes & the other ones (sorry I get confused with BAI, BDI) are for the general population?
  9. S

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

    @Hip - this may be silly or not even answerable. I only have 8 images from my NS, and only 2 from the MRI that he diagnosed me from (awkward wording sorry). I don't believe he sent me the flexion or extension ones. But in any case, this is where I saw his measurements I discuss here. Do you...
  10. S

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

    I still do not feel like I have the words. The closest upon reflection would be like the absence of being squashed at all times. From the top of the head but it actually affects the whole body even if slight. Like, I knew the feeling of my skull grinding into my neck, especially painful where...
  11. S

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

    Further help with your explanation (for me to understand), thank you. Dr. B told me in no uncertain terms that ICT is the last test and that if you do not have a positive result - no matter how severe or pathological your measurements are - you will not have surgery. My surgery was scheduled...
  12. S

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

    Thank you for the explanation! Slowly tiny pieces are falling together to help me understand better :)
  13. S

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

    Thank you for pointing this out. I barely understood it but some things are starting to sink in. I did get confirmation from Dr. B that I had AAI. I was 99% sure before, but wanted him to confirm just in case I was wrong.
  14. S

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

    Thank you :) :) Wow, thanks! :) I want to help out, and thank you for creating it, maintaining it and helping whenever someone needs help. It is really important.
  15. S

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

    So sorry, @Hip I just received my images last night, from Dr. B. I also am - well - completely horrid at any of this measurement/terms information. I have a weird inability to learn it. So the survey asks: Is your Grabb-Oakes normal, pathological or borderline? Here we are referring to your...
  16. S

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

    @Hip I apologize but I am struggling with a question. Here is my BDI according to Dr. B, and it includes with traction: On the survey the question seems to show a higher number as more pathological, but on my BDI report my number gets HIGHER with traction, and higher yet with heavier...
  17. S

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

    Thanks. I have a specialist, ran all the tests. I apologize, but I do not have the mental acuity to delve into a roadmap...I have had extremely high IgG for quite a number of viruses and some IgMs. I just answered based off of IgM - which I believe were only 2 or 3. *my brain fog has...
  18. S

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

    Shoot - cause I had very high IgG to some of those listed but not IgM
  19. S

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

    I finished the survey...But for this one below, I assume you mean IgM positive? And for for me it was IgM positive, I had EBV Viremia for some time but it finally not positive a while before my surgery. So I left some questions blank as was not sure how to answer. Also, I had IGM pos VZV, and...
  20. S

    They found something growing in the lungs

    It really has, thank you so much, good to see you :)
  21. S

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

    Yrs it totally addresses my concerns- thank you so much! I am in the waiting room at PT so can't answer now but will when I get home. 😊
  22. S

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

    @Hip I just clicked on the link to the survey and read that it is through your Google account. My Google account is my real first and last name...so while I read that it is anonymous, I would like to know who will have access to these? Because again, my real name. I really try to protect my /...
  23. S

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

    I tagged you in my update to ask if I can - because I am still not 100% whether or not I had AAI.
  24. S

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    I have hEDS. Manual Cervical Traction with a skilled PT, under strict instructions from my specialist, were incredibly helpful pre surgery. Post surgery, myofascial work, scar break up massage, careful additional PT exercises have been incredibly helpful.
  25. S

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

    If you are not referring to me, my apologies... If you are referring to me... I had major improvement in many areas, including in severe/chronic/disabling migraines (sometimes 30 in a month, not responding well to meds). I had many more improvements but I still felt fatigue. The horrific...
  26. S

    Tracking CCI / AAI MRI & Treatment outcomes

    Apologies, have not been on here in a very long time. I don't know if there is a good thread, and also I did not feel like someone was strangling me. Hope you find answers and feel better.
  27. S

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

    I apologize did not realize this was also addressed to me but I concur with Jen, please stop if Dr. B's office instructed you to stop.
  28. S

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    I may be wrong but I feel like in my video conference with Dr. B, he may have said that my measurements were not meeting the first threshold for surgery. He then talked to me about invasive traction, but also a lot of other things and I had a very poor connection, was trying to take notes while...
  29. S

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    I am almost, but not quite embarrassed to say...I *do not remember*. I do know that my specialist pulled up my head in our last visit, the one where I gave him my MRI - the one the day before he was meeting with Dr. B - and it was wonderful and did not want him to let it go. I was dxd with...
  30. S

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    So late in responding but - As you know I had severe neck pain but I have severe low back pain, as well which preceded my neck pain by years. Anyway - I have it so bad many times but especially in the morning I can not stand up straight, going to the restroom is horrible, etc. The only thing...