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Have you ruled out Chiari as a cause of your CFS

Discussion in 'General ME/CFS Discussion' started by Shawn, Jan 1, 2018.

  1. jeff_w

    jeff_w Senior Member

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    Your primary care can order it. It's easier that way. But it has to be flexion-extension of the skull and cervical spine. Not all doctors are familiar with that test, so your primary care will have to listen to you.

    Yes. Everything you're saying fits the profile of EDS, tethered cord, CCI, Chiari.

    EDS hypermobility decreases over time.

    Hopefully soon. Good luck!
     
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  2. Jessrose21

    Jessrose21

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    Farmington, NY

    Gosh, you're quick! Thank you so much. I have a new doctor who is very open to learning new things about ME/CFS and will do what he can to help. We were about to start a course of antivirals off-label, but I'd sure like to rule these things out first. I hope there's a hospital that does that CT scan with the flexion-extension in my area of Rochester NY. Will be checking with my dr! Thanks again!

    Jessica
     
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  3. jeff_w

    jeff_w Senior Member

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    After your CT scan, you need to get multiple copies of the CD images. Don't rely on the written radiology report. Radiologists miss Chiari and CCI all the time. Warn your primary care about this, so that he won't take the written report at face value.

    The neurosurgeons to mail your CT scan results to: Dr. Henderson (Maryland), Dr. Bolognese (New York), Dr. Gilete (Barcelona, Spain). Don't bother with any other neurosurgeon. They will misdiagnose you, over and over.
     
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  4. jeff_w

    jeff_w Senior Member

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    Very typical experience, and this is why so many of us suffer for years.

    After.

    I'm already so much better in the halo. No POTS, no PEM. It's amazing. I had severe ME/CFS since 2014, and before that I had mild ME/CFS beginning in 2011.

    I'll keep everyone posted after the fusion.

    It's a modern halo vest, and it looks like this.
     
    Last edited: Jan 4, 2018
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  5. jeff_w

    jeff_w Senior Member

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    I sent my MRI to Dr. Bolognese, who then scheduled a new patient teleconference. There was a charge for that.

    But, you can send your imaging to Dr. Gilete (Barcelona, Spain) via computer upload. He reviews it for free.

    Good luck!
     
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  6. Jessrose21

    Jessrose21

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    Farmington, NY

    That vest looks painful. Do the screws go into your skin on your head?
     
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  7. jeff_w

    jeff_w Senior Member

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    The pins screw into my skull. :cool:

    It was painful at first. I had to take pain meds (Norco, Tramadol) for the first 10 days after they put it on (October 3rd). But after those first 10 days, it hasn't been painful at all.
     
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  8. Jessrose21

    Jessrose21

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    Farmington, NY

    I guess 10 days of pain would be worth getting rid of all the other symptoms. How ever do you sleep in that thing? :wide-eyed:
     
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  9. jeff_w

    jeff_w Senior Member

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    Sleeping is easier than it looks. I squeeze a pillow between the halo bars. It's comfortable.

    Getting out of bed takes some getting used to, but it feels completely natural after some time. The halo has convinced me that humans can adapt to anything.
     
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  10. pattismith

    pattismith Senior Member

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    Chiari has been ruled out for me, but I suspect I suffer from intracranial hypertension, and I just read articles that found associations between Chiari and idiopathic intracranial hypertension

    https://www.ncbi.nlm.nih.gov/pubmed/12699714

    I have laxity in my joints, although not the kind of hyperlaxity seen in the EDS classic form;

    I am 50, and now my hips are making sounds every time I move (sometimes it hurts).

    I wonder if I should do the upright flexion extension test you are talking about jeff
     
    Last edited: Jan 4, 2018
  11. Rlman

    Rlman Senior Member

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    Toronto, Canada
    WOW! well it's great it has taken away so many symptoms for you @jeff_w ! when you wear the halo does your neck / skull feel stretched upwards?
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I agree and I am so glad the halo is helping you and you were suffering so much before you got the halo.
     
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  13. bombsh3ll

    bombsh3ll Senior Member

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    Bummer, I was hoping it was something like a neck brace that I could have ordered from Amazon.

    Thrilled that it is working for you though and I will definitely try and get my DVD images copied for expert review. Thanks for sharing all this info, it is really helpful.
     
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  14. dreampop

    dreampop Senior Member

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    I have always had upperneck/spine problems that seem to excede those in me/cfs, so this was very interesting to read. Did you by any chance have a permanent or semi permanent head pressure feeling w/o actual increase in intracranial pressure? Or neuromuscular aches coming from the neck or upper back, or from the jaw down to the upperback?

    I will definitely be check this stuff out. That comrpession by lax ligaments sounds a lot like what I experience.
     
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  15. jeff_w

    jeff_w Senior Member

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    I had everything you mentioned, except for the permanent/semi-permanent head pressure.

    If you're going to go down this route (which you should, IMO), you'll need to get a very specific type of MRI to catch this problem.

    The exact order should be an MRI of the skull and cervical spine, upright with flexion-extension. An MRI that is flat won't help you. It needs to be upright with flexion-extension. Without flexion-extension, the problem will be missed.

    During the upright MRI, you'll need to flex your head forward as far as you can. You'll then have a neutral image, head above shoulders normally, without flexing. Then, you'll need to bend your neck backwards as far as you can. You need to demonstrate your entire range of motion for this test, or the results will be invalid. (The radiology techs will give you some guidance, but they don't always give detailed instructions, so I included them here. In my case, he gave me really vague instructions, which gave an invalid image, so I had to repeat the test.)

    A few days or weeks after the MRI, you'll receive a radiology report. Ignore it. Radiologists aren't trained to look for this problem, craniocervical instability (CCI). So, the written report is meaningless for this purpose.

    You'll need to request multiple hard copies of your MRI CDs. Then, you'll need to mail the MRI CDs to one or more of the following three neurosurgeons: Dr. Bolognese (New York), Dr. Henderson (Maryland), or Dr. Gilete (Barcelona, Spain). These are the only neurosurgeons who consistently know how to read these images to diagnose CCI

    Good luck!
     
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  16. jeff_w

    jeff_w Senior Member

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    You could try a Philadelphia cervical collar. This helped me to an extent, at first. But as my condition progressed, the collar didn't work anymore.
     
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  17. jeff_w

    jeff_w Senior Member

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    Yes! You should.

    I never would have guessed this was the solution to my ME/CFS. There have to be others here like me. If this is your problem, there is a good chance that surgery will fix you.
     
    Last edited: Jan 4, 2018
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  18. jeff_w

    jeff_w Senior Member

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    It's been amazing! And I look forward to no longer needing it after fusion surgery.

    No, the neurosurgeons are very careful to keep your head in "neutral." Not too much pull, just a normal position.
     
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  19. dreampop

    dreampop Senior Member

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    I will heed the instructions! 2 more questiosn, probably don't mean anything - was the neuromuscular stuff predominately one sided and did you have any sinus issues?
     
  20. bombsh3ll

    bombsh3ll Senior Member

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    What was it that led to you exploring this avenue Jeff? I read your earlier thread about IV saline, florinef etc and your presentation is very similar to mine. Did those earlier treatments that were so helpful eventually stop working?

    I have a feeling those three neurosurgeons are going to be kept busy looking at a lot of scans in the next while. Was Dr Bolgonese familiar with EDS and POTS? Just once I would like to not get a blank look and have to start from the top!

    I think I will try this, thanks.
     
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