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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. jeff_w

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

    You'll definitely want to check with Dr. Patel himself. Some questions to ask might be: "How do you determine the optimal position to fuse a patient?" And, "Do you ever provide vertical lift in the positioning process?" And, "How do you correct for cranial settling?" Let us know what he says.
  2. jeff_w

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

    On the topic of regenerative medicine, @PisForPerseverance wrote: I had my cervical spine, beneath my fusion, treated with regenerative medicine. I didn't have the PICL, because that treats the upper cervical joints, which I'd already had fused. The stem cells did work for me, providing...
  3. jeff_w

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

    Hi @DrDiana Both Jen and I also got sick after viruses. In our cases, the problem was anatomical. That our illness began with a virus is not inconsistent with an anatomical problem. As for digging deeper into the cause of ME/CFS, that is a very important step in solving the puzzle -- so great...
  4. jeff_w

    My MRI images

    Hi @sb4 Yes. Yes. You have a retroflexed odontoid, as I did prior to my fusion. That abundance of CSF can be associated with intracranial hypertension.
  5. jeff_w

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

    Hi Everyone! For the past year and a half, I have publicly proposed that ME/CFS could have a mechanical basis. Specifically, I’ve proposed that brainstem compression from craniocervical instability (CCI), atlantoaxial instability (AAI), as well as spinal cord compression (cervical stenosis) or...
  6. jeff_w

    CCI / AAI? My MRI Images - Supine

    Hi @Seven (formerly lnester7) - You appear to have a disc herniating into your spinal canal, completely blocking your anterior CSF flow as well as compressing your spinal cord anteriorly. You also appear to have disc disease and bone spurs at every level of your cervical spine. There appear to...
  7. jeff_w

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

    Hi @mattie I see, thanks for clarifying.
  8. jeff_w

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

    Hi @pattismith , They occur together frequently, probably more often than not. As @Joly explained: Yes. It seemed so minor compared to everything else (PEM, POTS, etc.). After the fusion, my leg pain increased due to increased tautness of my spinal cord. Even a fractional increase in...
  9. jeff_w

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

    I should add that having multiple underlying structural issues is very common. I'd even say it's the norm for these conditions. I'm basing my opinion on what I've learned over the past 2 years in the CCI/AAI neurosurgery community. As just one example: I didn't have just CCI/AAI alone. I also...
  10. jeff_w

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

    It really is. I appreciate your sense of humor about this. :) We will probably have an exact answer to our debate 5-10 years from now. If it turns out that you are correct about horizontal vs vertical instability outcomes, I will offer to buy you a drink. :beer::beer:
  11. jeff_w

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

    Hi @bread. All 7 of us with ME who have had fusions improved, just to different degrees. There are multiple potential explanations for the different outcomes. As for why I wrote that Mattie has a "remaining structural issue," it is because Dr. Gilete and 5 other professionals have said this...
  12. jeff_w

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

    Hi @bread. No, I improved by wearing a collar, even without vertical traction. A Philadelphia cervical collar improved my symptoms and tided me over for almost 2 months, until I collapsed. I've written about my experience with the collar on my website. Lying down and wearing my collar did...
  13. jeff_w

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

    Agreed. We have a clear counterexample.
  14. jeff_w

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

    My only concern is that people will take away from this discussion that "horizontal instability = permanent damage." It seems to be such a baseless overreach. But perhaps people do fully understand the highly speculative, non-evidenced nature of that idea. If that's the case, then my concerns...
  15. jeff_w

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

    Hi @borko2100 , Case A is below: Case B is below: Your description of why traction would work is really helpful, thanks for posting this. Just so we're clear: Your "Case A" is an example of vertical instability. Your "Case B" is an example of horizontal instability. No, that's not quite...
  16. jeff_w

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

    I still do not quite follow the basis for the above assumption. Why assume that horizontal instability would likely lead to irreversible harm? Whether the instability is horizontal or vertical, the brainstem tissue is being mechanically distorted. I had classic horizontal instability. It was...
  17. jeff_w

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

    Yes. I chose to have ICT. Dr. Bolognese told me that, based on my MRI, he was willing to operate without doing it, but he still offered to do it. I accepted his offer out of curiosity. Most of them require an in office visit, and they will ask detailed questions to try to determine if a...
  18. jeff_w

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

    Ah, only up to a point. After my symptoms became very severe, lifting my head by myself did nothing. I needed a manual physical therapist. Once she did traction on me, I felt so much better. She then taught my family how to do it. Because traction mimics a fusion and is therefore an efficient...
  19. jeff_w

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

    Hi @bread. Of the 20 fusion patients in the study you've linked, 18 of them also had a Chiari Malformation. This comorbidity may or may not be a factor in the ultimate outcome. We don't yet have enough data to know the answer. Another explanation for those outcomes could be the neurosurgeons'...
  20. jeff_w

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

    Hi @bread. You wrote: There are 5 complete ME/CFS remissions, following a fusion surgery for CCI +, that I'm aware of. Consider this: How many people do we know -- with an ME diagnosis -- who have had a fusion surgery? I know of 7: Karen, Jen, Starchild, Mattie, Julia, myself, and one...
  21. jeff_w

    Tracking CCI / AAI MRI & Treatment outcomes

    Hi @Julia_S - Perfect!!!!
  22. jeff_w

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

    Yes. I had an upright flexion/extension MRI, as that was Dr. B's preference until (roughly) early 2018. I believe there is, yes. An upright flexion/extension MRI is more likely to catch CCI than a supine one. False negatives seem to be regularly occurring with supine MRIs, as evidenced by...
  23. jeff_w

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

    The EDS-literate neurosurgeons have the diagnostic capability to recognize these conditions when they don't occur as a result of blunt force trauma. They also have technical expertise, with good surgical outcomes, because they do these surgeries all the time. Other neurosurgeons do these...
  24. jeff_w

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

    Hello, @Michiel Tack - You've compiled and synthesized an impressive amount of information here. Well done! I'm going to add my own thoughts to the information you've presented, piece by piece. It is true that this surgery limits a patient's range of motion by roughly 30%. That being said, I...
  25. jeff_w

    My ME is in remission

    Sorry to hear it. It's an injustice. With the right documentation, people with no out of network benefits have successfully appealed to their insurance companies, in order to see an out of state specialist neurosurgeon. It can't always work, but it happens quite often.
  26. jeff_w

    My ME is in remission

    As for a narrow spinal canal -- if it's sufficiently narrow, it's "cervical stenosis." A narrow spinal canal can squeeze your spinal cord, causing chronic spinal cord compression. This spinal cord compression can cause extremely similar, if not identical, symptoms to brainstem compression from...
  27. jeff_w

    My ME is in remission

    My insurance covered the fusion. I'm in the USA. With few exceptions, all US insurance plans will cover it.
  28. jeff_w

    My ME is in remission

    Hi @Roy S I added an FAQ section to my website tonight. It will continually evolve as information is added over time.
  29. jeff_w

    My ME is in remission

    My fusion was in January of 2018. Jen's was 11 months later, in December of 2018.
  30. jeff_w

    My ME is in remission

    In addition to Jen and myself, we now have a 3rd person with ME who has had the same surgery. He has experienced significant improvement! I figure everyone following this thread would be interested in Mattie's story. I interviewed him, here. Let's not derail Jen's thread. I just popped this in...