International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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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. Gingergrrl

    Gingergrrl Senior Member

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    I absolutely could not agree with this statement more. He's intellectually curious, driven to help, and also very compassionate and kind. He literally helped come up with questions for me to ask my mom's oncologist on Christmas Eve. Who does that?
     
    valentinelynx, kelly8, bspg and 6 others like this.
  2. perrier

    perrier Senior Member

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    May I ask, what sorts of improvements are folks getting from Kaufman's treatments? Does anyone know?
     
  3. Learner1

    Learner1 Forum Support Assistant

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    The biggest things for me so far is my brain fog lifting, cognitive dysfunction improving, and POTS and fatigue have improved. I'm not cured and am still in the thick of treatment, but my quality of life is better than it was 8 months ago when I began seeing him.
     
    anni66, bspg, justy and 6 others like this.
  4. jeff_w

    jeff_w Senior Member

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    There are a lot of threads on this site that talk about this. You can search the site, you'll get a lot of info.

    Here's just one: Seeking information on long-term outcomes with Dr. Kaufman
     
    bspg, Wayne, perrier and 1 other person like this.
  5. Awags1986

    Awags1986

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    @jeff_w
    Mind.Blown. My family's history of neck issues along with chronic health issues could all come down to this...I cannot thank you enough for this info. Please keep us posted on your health, and if you see continuous improvement(which I so very hope you do!) My 4 year old son complains of neck/back pain already, and if this is something I can find that works for me then he will be ahead of the game. Which is all I can hope for...
     
    kelly8 and jeff_w like this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    I wasn't sure where to post this but I hope you had a safe trip to NY @jeff_w and if I am remembering correctly, your surgery is in a few days! I hope everything goes smoothly and please let us know how you are doing when you can. Fingers crossed, I am looking forward to you no longer needing the halo and making a 100% full pre-illness recovery :hug: :hug::hug:
     
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  7. bombsh3ll

    bombsh3ll Senior Member

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    Has anyone heard from Jeff? I hope his surgery went well and would love to hear a success story.
     
    jeff_w, erin, Sushi and 1 other person like this.
  8. Shawn

    Shawn SK

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    Francis smith at the london Center is skilled at picking up CCI
    nicid
     
  9. bombsh3ll

    bombsh3ll Senior Member

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    That's helpful to know, thanks. Is he a neurosurgeon or a radiologist? Do you know what he charges to review scans? My images are currently with Dr Gilete in Spain. He charges 250 euros to review your MRI scans with a symptom questionnaire.

    If I did need surgery, I would prefer to get it in the UK if there was someone with the skills. Having said that, my daughter wouldn't be here if I hadn't gone to Spain for IVF, & the standard of care there far surpassed the UK. It is travel that is very difficult for me now.
     
  10. Shawn

    Shawn SK

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    He is a professor of radiology ,charges about 200 to read scans so I've heard.

     
  11. MartinDH

    MartinDH Senior Member

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    Can one have this without elastic skin and elastic joints? because my 23andme results show a mutation related to EDS
     
    jeff_w likes this.
  12. Shawn

    Shawn SK

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    Yes can have with or without
     
  13. kelly8

    kelly8 Senior Member

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    Does anyone know how @jeff_w is doing? I'm hoping well. My sister has eds and is having Neuro issues. I've always had a "loose " vertebrae in my neck. This info is priceless to us. I'm hoping surgery went well and he is doing better!
     
    Rlman likes this.
  14. jeff_w

    jeff_w Senior Member

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    Hi Everyone,

    My surgery on 1/31 went well, with a few complications.

    After surgery, my POTS was gone for three days. On day 4, my post-surgical swelling increased, which is normal, and the POTS returned. This is normal, but frustrating. The swelling causes POTS to temporarily reemerge, because the swelling puts pressure on the craniocervical area and distorts the neuro structures -- until the swelling resolves.

    Around the second week, my swelling was decreasing, and my POTS was going away. This was an amazing feeling to be without a halo, holding my head up, improving.

    Until... the surgical site became infected.

    Day 21 post-surgery, the swelling rapidly increased, and my incision site became bright red, inflamed, and the redness was spreading. I spiked a fever of 101.6 and went to the E.R. They admitted me for a week, got me on IV antiobiotics with a PICC line. I was discharged yesterday.

    My hospital infectious disease team consulted with the Mayo Clinic, and they recommended that I return to Dr. B in New York to get the surgical site re-opened and cleaned out. This is officially called "debridement" of the surgical site. Dr. Bolognese said that his protocol in cases of infection is debridement. So with Dr. B and the Mayo Clinic on the same page, I've scheduled an appointment to fly back to NY and be opened up on March 13th.

    Fortunately, Dr. Bolognese won't have to remove the fusion hardware. As long as the infection hasn't yet embedded into the hardware, a debridement and IV antibiotics is all I will need.

    I'm disappointed by this setback, but I'm keeping the long term view in mind.
     
    Last edited: Mar 3, 2018
    sb4, Rlman, erin and 10 others like this.
  15. Sushi

    Sushi Moderation Resource Albuquerque

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    Thanks for updating us Jeff. We have all been thinking of you and hoping that things were going well. Sorry for the setback but it sounds like you are in very good hands. Your initial improvements are very encouraging. Best wishes for your return to New York. We'll be really appreciative to hear how everything goes for you. I'm tagging @Butydoc as I'm sure he will also be interested in your post.
     
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  16. kelly8

    kelly8 Senior Member

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    So sorry to hear of the setback @jeff_w ! I'm sure having those symptoms going away and then coming back was frustrating but it sounds like you are in the right track. Keep us posted as to your progress!
     
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  17. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Thanks for the update @jeff_w . The story of your symptoms, diagnosis, surgery, and your response to the surgery is just fascinating. I am sorry to hear about your infection and hope it will be gone soon. You’re a tough guy. Thank you for sharing your story. Hope you will be well soon. :hug:
     
  18. nanonug

    nanonug Senior Member

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    MRI of the head revealed no Chiari malformation in my case. More than that, it revealed nothing wrong. I've had two head MRIs done so far.
     
    sb4 likes this.
  19. Dmitri

    Dmitri Senior Member

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    I spent a long time trying to rule out Chiari since the known symptoms are such a good fit to my own. I had brain, spine and flexion/extension neck MRIs done. The images were evaluated by Dr. Greenfield, another Chiari specialist. According to him, my cerebellar tonsils are slightly lower than normal, but it's very unlikely that I have Chiari. Neck MRI came back clear in every position except mild disc herniation.

    From upright neck: [​IMG] [​IMG]
     
    Last edited: Mar 8, 2018
    jeff_w likes this.
  20. bombsh3ll

    bombsh3ll Senior Member

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    Thanks for updating Jeff, I'm so pleased to hear your surgery went well on the whole, but sorry to hear about your setbacks. I hope you are soon on the mend and look forward to hearing the final verdict on surgery, it sounds very positive that you got periods of relief from POTS!
     

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