• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

Neck surgery

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Neck surgery

  • This topic has 1 reply, 1 voice, and was last updated 10 years, 1 month ago by Dr. Diana.
Viewing 2 posts - 1 through 2 (of 2 total)
  • Author
    Posts
  • January 29, 2013 at 12:20 pm #398
    qanik
    Participant

    Hello All,
    It has been some time since I posted. Diagnosed with hyperadrenergic pots and small fiber neuropathy at Mayo a fe years ago. Finally saw the geneticist last week. He stated ” EDS hypermobile”. Anyway, I saw a neurosurgeon for this ongoing bad neck pain that others have described on here. He stated i had a cervical myelopathy and need surgery to give the cord more room. I asked about C1-C2 instability as having EDS and the pain I was also worried about this. He did not seem worried about this. Any thoughts? He did an MRI with some flexion extention shots. I dont want to have surgery and only fix part of the problem if there is more then one issue. ALso small fiber nueropathy is back and horrible the last few weeks. Burning everywhere?? good Lord its like one issue after another.
    Thanks
    Qanik

    January 30, 2013 at 11:05 am #3377
    Dr. Diana
    Keymaster

    Hello All,
    It has been some time since I posted. Diagnosed with hyperadrenergic pots and small fiber neuropathy at Mayo a fe years ago. Finally saw the geneticist last week. He stated ” EDS hypermobile”. Anyway, I saw a neurosurgeon for this ongoing bad neck pain that others have described on here. He stated i had a cervical myelopathy and need surgery to give the cord more room. I asked about C1-C2 instability as having EDS and the pain I was also worried about this. He did not seem worried about this. Any thoughts? He did an MRI with some flexion extention shots. I dont want to have surgery and only fix part of the problem if there is more then one issue. ALso small fiber nueropathy is back and horrible the last few weeks. Burning everywhere?? good Lord its like one issue after another.
    Thanks
    Qanik

    Hi Quanik, that neuropathy, neck pain at the base of the skull (does yours radiate down to the tops of your shoulders?) is something that most of us share, I’m afraid. My kids and I were able to get rid of it without surgery (thank goodness!), as have a lot of people here. Many of us suffered from external communicating hydrocephalus, which actually pushes the brain down and imitates Chiari/cranial instability. Diamox (Acetazolamide) will usually get rid of that. Did you ask your doctor for a trial of Diamox, perchance? Let us know? Hang in, my friend. 😉 Diana

  • Author
    Posts
Viewing 2 posts - 1 through 2 (of 2 total)
  • You must be logged in to reply to this topic.
Log In

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020