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Chiari Malformation Community
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1823499 tn?1370093889

raynauds disease?

If anyone on here has fingers, toes, nose and lips that get so numb they go white and dont have feeling from the cold or stress, its called raynaulds. I found it on my report from y nl. Hmmm learn something new everyday. Its not harmful just annoying.
11 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi...yes, it is also part of EDS....I had it yrs b4 I knew about my Chiari and EDS dx.....

Signs and symptoms



Individual with EDS displaying hypermobile joints


Individual with EDS displaying skin hyperelasticity
Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of collagen. EDS most typically affects the joints, skin, and blood vessels, the major signs and symptoms include:
Loose, unstable joints that are prone to: sprain, dislocation, subluxation and hyperextension
Early onset of osteoarthritis
Easy bruising
Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse)
Flat feet
High and narrow palate, resulting in dental crowding
Vulnerability to chest and sinus infections
Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
Velvety-smooth skin which may be stretchy
Abnormal wound healing and scar formation
Low muscle tone and muscle weakness
Myalgia and arthralgia

Other, less common signs and complications may include:

Headaches caused by an acquired Arnold-Chiari malformation (brain disorder)
Osteopenia (low bone density)
Problems with proprioception including dysmetria
Talipes equinovarus (club foot), especially in the Vascular type
Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility
Functional bowel disorders (functional gastritis, irritable bowel syndrome)
Gastroparesis (partial paralysis of the stomach)
Early-onset periodontitis
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)

Vascular skin conditions:* Raynaud's phenomenon, Livedo reticularis
Blue sclera
Swan neck deformity of the fingers
Insensitivity to local anesthetics.
Premature rupture of membranes during pregnancy
Platelet aggregation failure (platelets do not clump together properly)
Weak muscle tone (hypotonia) in infancy, which can delay the development of motor skills such as sitting, standing, and walking
Arterial/intestinal/uterine fragility or rupture
1823499 tn?1370093889
Wow thanks selma. Just one more thing to discuss with dr oro. Maybe i have eds. I have the joint isue on left side nl said and also a really high roof of mouth. Hmmmm wonder why my nl didnt send me to get tested for eds? Now im wonderin.....
620923 tn?1452919248
COMMUNITY LEADER

  So many over look it..this is y I am always saying get checked...there r so many things that can be going on and we assume it is the chiari when it may be a related issue like EDS.....

  And this can affect how u feel and heal post op...all depends on how it is affecting u...
Avatar universal
This can be harmful if it is Raynauds. Too long without blood flow causes tissue death. It can also harden the capillaries and arteries, but allowing for proper blood flow. Necrosis and gangrene can become an issue with Raynauds. It is imperative to keep those spells as few and far between as possible. Also, some headache preventatives such as beta blockers can worsen Raynauds, do always ask your dr about your meds and Raynauds impact.
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

  This is an older thread and the person  you are  addressing your  reply to may not see it...you can send  a PM(private message) which will generate an e-mail alerting them someone is trying to make contact.

979826 tn?1389039958
i was just diagnosed with Raynauds. my dr said i have frost bite on my toes from lack of blood flow. do you know if there is anything to be done about it? i am having some test done tomorrow like an ultrasound of my feet to look at the veins but i don't remember why he wanted that lol
molly
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