This is so completely offensive and insensitive that I don’t even know where to begin. I am very glad for your partner that he is minimally affected by his (what I would guess is classic by your description) EDS. However, just because you know one person who has not yet been severely affected by their EDS does NOT mean that EDS is an “incidental” finding. And because you seem to have a very limited understanding of how EDS does affect the MAJORITY of those diagnosed here is one of the best descriptions I have ever seen. This is taken from www.everydaysyndrome.com
So what exactly is Ehlers-Danlos? It is a hereditary genetic connective tissue disorder that gives the sufferer faulty collagen. Collagen is the “glue” that holds the body together; it is a protein that makes up 30% of the body and 75% of the skin. It plays a major part in almost every system and organ of the body.
The following are SOME symptoms of Ehlers-Danlos, but - to be clear - the presence of some of these symptoms is common in many people and does NOT necessarily mean that you have EDS, so don’t worry…
Loose, unstable joints that are prone to sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness)
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)
Chronic fatigue
Flat feet, often with later onset
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 and is often translucent
Abnormal wound healing and scar formation
Low muscle tone and muscle weakness
Migraines and headaches, including postural headaches from spontaneous intracranial hypontension
Myalgia and Osteopenia (low bone density)
Talipes equinovarus (club foot)
Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility
Arnold-Chiari malformation (brain disorder)
Functional bowel disorders (functional gastritis, irritable bowel syndrome)
Gastroparesis
Dental issues, including early-onset periodontitis
Severe sleep disorders
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 and painkillers
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
EDS patients have a very hard time being diagnosed for many reasons. The large scale of symptoms can look, from the outside, like a combination of many medical problems or, conversely, like plain old hypochondria. Some people, like me, are so afraid of being labeled “crazy” for talking about their symptoms that they spend their lives hiding the pain, the constant vomiting, the skin tears, etc. even when they can’t hide the torn muscles, broken bones and dislocated joints et al. Some sufferers never even know that there is an explanation for their strange combination of bodily weirdness. In fact, doctors believe that one of my idols, John Ritter (who was clearly hypermobile and died of an aortic dissection), had undiagnosed EDS.
The biggest problem at this point for EDS patients is a simple lack of knowledge about the syndrome, even within the medical community.
So, as for the neurosurgeon saying it’s “fine” I wouldn’t bet on that. The consensus amongst other medical professionals is that there is no way in hell he has looked at my images yet. Clearly, there must be an office mix up. Either that or I obviously do need another opinion because if someone can’t spot dural ectasia amongst the other issues then clearly I do need to go elsewhere. But, as I said before I am very happy that your partner has been able to remain active. Maintaining muscle mass is key for EDSers.
[QUOTE=mickeydoodle;5845218]
The majority of people with some form of Ehlers Danlos are minimally symptomatic- they have a higher incidence of joint laxity, some are more prone to dislocations, but it does not shorten life span, and in general is just an incidental finding. Some few will have spinal problems, but this is the minority. My partner has Ehlers-Danlos- he can pull his neck skin out 6", he has dislocated his acromio-clavicular joint, but he is a surgeon, rides bikes 30+ miles per week, plays league basketball, has climbed many mountains, hiked in the Amazon,Patagonia, Keyna, Alps, etc.
Maybe if the neurosurgeon says the spine is ok, it is, and the fatigue and other symptoms are something else.[/QUOTE]
