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Dural ectasia without Marfan syndrome

Hi. I noticed that someone mentioned they had dural ectasia and not Marfan syndrome and I am really interested in contacting them. I too, have DS with Tarlov cysts and sacral erosion and have had great difficulty in finding information not linked with the syndrome. I think they posted sometime in the autumn of last year. If anyone is out there with the same difficulty I would like to hear from them. We may be able to exchange information and ideas. Thanks. Jill


  • Jill, I am the same as you . I have DS and Tarlov cysts but can get no answers from anyone. Not sure where you are but I am in Australia and there just isn't any help here what so ever. All they want to do is give you drugs for the pain.
    Have you had any luck?
  • SavageSavage United StatesPosts: 5,476
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  • cchelmsccchelms Raleigh, NCPosts: 2
    Hi, Jill and kings27. I, too, have dural ectasia and spinal erosion (lumbar and sacral) from the elevated CSF pressure. I do not have Marfan Syndrome, but do have Ehlers Danlos Syndrome Hypermobile Type (EDS-HM). EDS-HM is the most common and under-diagnosed, type of EDS. Anyone experiencing dural ectasia likely has some form of connective tissue disorder, which is why the dura stretches in the first place. Please be sure your care team looks for the underlying cause of the dural ectasia and do not be satisfied with pain medication. It is a very serious condition for those of us whose tissues keep stretching and stretching!
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