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Sacral Thecal Sac Ectasia (dilation) with erosion

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:21 AM in Lower Back Pain
I have had lower back pain that goes into the hips and legs for years. It has recently gotten a LOT worse. I had an MRI done that revealed ectasia of the sacral thecal sac with well-corticated, indolent erosive changes along the posterior aspect of the S2 and S3 vertebral bodies. There is not a day that I do not hurt. I can no longer stand or sit more than 10 minutes without a horribleincrease in pain. The neurosurgeon that I saw says that this does not cause pain and he does not know why I hurt, but to try physical therapy. (Even with the erosive changes....) Any thoughts or ideas???


  • Hi,

    What type of doc are you dealing with? I have done some reading on this (I'm not a doctor) and this condition is many times a sign of another condition called Marfan's Syndrome.

    Anyway here's a quote from a study done in Tel Aviv University
    "Dural ectasia can affect the spinal canal in any plane, but
    the most common sites are the lumbosacral region [Figures 2,4].
    Therefore, the most common clinical symptoms are low back
    pain, headache, weakness, and loss of sensation above and below
    the affected limb, occasional rectal pain and pain in the genital
    area. The symptoms are aggravated mainly in the supine position
    and are relieved by lying on the back"

    I would definitely talk to your doc and see if you can get a referal to a specialist or get his attention. I wouldn't just accept his call of "it can't be causing you pain".

    Welcome to Spine Health.

  • Thanks for the info. I went to a neurosurgeon. He was not at all helpful. Everything I have been able to pull up refers to Marfan's Syndrome. I don't think I have that.....I don't have the long limbs..... I have pain in the lower back, legs and hips (which sometimes wraps around to the pelvic bones). Occasionally I have a tingling in the legs, but no numbness. I do have headaches, but I don't know if that is associated with this. (I can't lay on my back, it hurts too bad. I have to change fromone side to another becasue my hips hurt lying on my side....)
    A little more background-- I had a c-section 9 years ago. I had an epidural. I felt the doctor cutting my abdomen. I yelled.telling them. I was told that I was mistaken. He began cutting again.again I yelled. He then tried to trick me and ask if I felt the next cut....which I didn't becasue he was not cutting. At that point he realized I was not numb. They put me out. When I woke up I felt like I was laying on a softball. My back hurt so bad.... It eventually lessened. Over the years it was there off and on...then more and more until now it is steady unrelenting and so much worse....
    When the neurosurgeon told me he saw no reason for pain(even after explaining all of this to him), all I could do was sit there and cry. I am not wishing any horrible disease or anything on myself, but if a person can at least be diagnosed, there may be a chance for treatment. I am only 34 years old........I need to find some answers...
  • During the research I did, it mentions that a problem with epidural anesthesia is associated with this.

    Can you go speak to a different doctor and present this and ask for it to be looked at in a different light?

    It doesn't have to be Marfans, however it definitely can be the cause of a lot of pain and problems. Heaven forbid they ever try and do an epidural on you again for anesthesia purposes. Do they have it in your medical records to avoid that type of anesthesia?

    Hang in there. Knowledge is power and you have more information now so that you can move forward. Please let me know how it goes.

  • Hi,

    I had been experiencing severe pain. I have Marfan's Syndrome and scoliosis. In 1977 when I was 13 I had a spinal fusion of almost my entire spine. I have had Migrains for about 20 years and the past few years I was experiencing terrible nerve pain in my back. After many Dr's and many meds, I finally got relief from Neurontin. I continued seeing a couple other Dr's as I could function pretty good as long as I wasn't sitting for long periods. I have been out of work since August and trying to get back to normal so I can go back to work (I have a desk job). When I sit for just a few hours each day i get pain in my hips, back of legs, back, and sit bone. The pain intensifies until about the 4th day I get my terrible nerve pain again and can't function. I had another MRI in September that showed that I have extensive dural ectasia. The Dr wanted to rule out other things so I had SI injections and also physical therapy for possible bursitis of the ischial. Neither seemed to work. The Dr wants to give another 14 days or so to see if the injections will work...it's only been 10 days with no relief from sitting. In the meanwhile, he is going to talk with my Neurologist and another Dr to see if I might benefit from a Spinal Cord Stimulator. Any thougths on this. I don't know much about it. Thanks!
  • Hi Quinn,

    Wow what a road you have had to travel. My hat is off to you for managing a life with all you have had to endure.

    I have a cervical SCS and I love it! My opinion is that if a doc feels you might benefit from an SCS and offers a trial, go for it. That's just the way I feel, since I am so elated over the relief it brings me!

    Pretty much an SCS will either work or not work for a person. I get tremendous relief with mine. It doesn't take away all of my pain, but enough to let me function and move forward.

    Kindest regards,

  • I have severe leg pain with some back pain. I get it sometimes a few times a week with muscle spasms that go down my back to my butt & legs. I also have some lower back pain but the worst pain is in my legs. I can be lying in bed at night & feel it come on & after I get up & move around it gets worse. If I take a muscle relaxer & vicodin & lay in bed it will go awau after several hours. If I lay on a hard surface, exam table, that will trigger the pain. I have a rod in my back & a MRI shows Dural Ectasia. Is this is what is causing this terrible pain? My doctors cannot find anything else.
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