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Dural Ectasia, anyone else?

NervePainSucksNNervePainSucks Posts: 2
edited 06/11/2012 - 8:57 AM in Lower Back Pain
In addition to other spine relatied issues, I've been diagnosed with dural ectasia, which is a cyst under the membrane of my spine. It is a large cyst in my case, and it cannot be removed as the membrane of the spine cannot be cut into. Many of my doctors have never even heard of it. I was diagnosed at the Cleveland Clinic, but even there, no doctor has heard of anyone other than me who has Dural Ectasia but who does not have Marfan Syndrome (tests confirm I don't). If anyone else has this, I'd like to hear form you. Thanks!


  • Hi, I see you are a new member of this forum, as am I. Sounds like you're going through a miserable time. I've never heard of your particular condition, but I understand nerve pain, having had a bad complication of surgery, in the form of sciatica. I swear, that electric pain zapping down a leg is the kind of agony you could torture someone with. :jawdrop: I've got a condition called "arachnoiditis", which means that my spider is swollen. <:P Actually, it's the second layer of the spinal cord, under the dura, the arachnoid, which is inflamed, due to too much monkeying around with my spine, in several surgeries. The arachnoiditis keeps the sciatica rolling along.

    But there are some meds that help a lot. Have you tried Cymbalta or Lyrica? Those meds have helped my nerve pain, along with narcotics. Lots of narcotics 8>

    I hope that you will find some relief. It is an honor of questionable worth to be the only patient to have a painful medical condition.

  • In response to NervePainSucks:
    I'm 30 years old and have also just been diagnosed with both dural ectasia and Tarlov cyst. I am fairly sure I don't have Marfan syndrome since I don't have any other characteristics of that, but like you, I have trouble finding any info on dural ectasia in people WITHOUT Marfan.
    I live in Southern California and I had a consultation with a neurosurgeon who says the dural ectasia is not the cause of my symptoms because "it's just spinal fluid". But I have no history of injuries or back problems, no slipped discs, only very mild scoliosis. I see no other reason for the severe pain in my back/tailbone and nerve pain in my legs. So glad to find someone else in my shoes! Have you had any luck since you posted in October?
  • I have neurofibromatosis type 1 and a dural ectasia which I am told is eroding my spine... Hence the pain. Does anyone else have this please?
  • Sorry to revive a likely dead forum thread but I was searching for ideas on dural ectasia treatment and found this. I've been diagnosed with Marfan's and as a complication, dural ectasia. I just noticed Kristen_a's post about not thinking she has Marfan's and wanted to suggest seeing a doctor about it. Dural ectasia and scoliosis are two potential markers for Marfan's and it definitely warrants further investigation. The most life-threatening symptom of marfan's is aortic dilation and often goes symptom free until it dissects which is extremely critical. I'm not trying to scare anyone, I just had to say something on the off chance that it was more serious to prevent something bad from happening. Always better safe than sorry.
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