• 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

Reply To: MRI pictures of my head, Chiari and hydrocephalus?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › MRI pictures of my head, Chiari and hydrocephalus? › Reply To: MRI pictures of my head, Chiari and hydrocephalus?

July 27, 2013 at 10:20 pm #3963
Barbara
Participant

Thanks for all of your answers!
I don’t have Chiari but cranio-cervical instability and a cervical-spine that looks like I had a whiplash without having it.
I have blocked CSF flow and a pretty long Syringomyelia in my spinal cord as a result.

Some symptoms (only Syringomyelia, not EDS-related):
headaches, chronic pain (in addition to my EDS pain), double vision, pressure sensation, whooshing tinnitus with heartbeat, a lot of passing out,
weakness, fatigue, lameness in my legs most of the time (wheelchair), gag reflex problems, throat swelling sensation, vertigo, brain fog, speech problems, POTS.

Hi Samuel,
I have Cranio-cervical instability too but no syrinx, following a bad backwards fall onto a stone ledge and I have many symptoms similar to yours. Some are caused by raised intracranial pressure, some caused by the cranio-cervical instability which, when my head is pushed forwards, allows my odontoid to irritate my brainstem. Symptoms we have in common are:-
Headaches, chronic pain, intermittent double vision, tinnitus (both pulsing/throbbing on a morning and constant high-pitched for the rest of the day), weakness, fatigue, partial lameness (though this has improved), intermittent gag reflex problems, throat swelling sensation, brain fog, POTS and no doubt you have many more symptoms, as I do. I too am in a wheelchair, so I can certainly empathise with your suffering.

I would like to give you a piece of advice regarding the throat swelling sensation, you may not be the same as me but if you are, this piece of information will help – avoid moving your head from left to right whilst looking down (in flexion) for instance, whilst flicking through a magazine. In fact avoid putting your head into flexion at all, if you can, as this can trigger or worsen other symptoms.

Are you wearing a cervical collar, if so, what type ? A Philadelphia Cervical collar reduced my pain greatly overnight (particularly the excruciating all over body pain that used to wake me several times a night). The severe occipital pain, the nagging neck pain and shoulder pain eventually went too, so if you’re not in one already, it’s something you should seriously consider.

I also suggest you have your Vitamin D levels checked, for if you are deficient, this too can cause a level of chronic pain.
Regards
Barbara
(UK)

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