Experience with Dorsal Arachnoid Web (DAW) in T-Spine?

Posted by klingebretsen @klingebretsen, Mar 11 6:58am

I just received MRI results of my thoracic spine, which was conducted in order to place a spinal cord stimulator for chronic pain in my lumbar spine: L5/S1 nerve damage and hyper mobility in my L3 and L4. However, the MRI shows that I have a Dorsal Arachnoid Web (DAW), a rare, acquired, or sometimes congenital condition where a band of thickened tissue in the arachnoid membrane causes dorsal compression of the spinal cord in my t-spine.

Does anyone in this community have any experience with this condition? Much appreciated.

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My daughter became paralyzed from the waist to her knee. Stanford hasn’t been able to diagnose her after 18 months. Many ct scans, MRI’s and mri with contrast from head to toe. One doctor thought she might have scoliosis. Nothing came of that.

I was reading about DAW and I believe is said if you had previous injury or infection. She had meningococcal infections at 3 years old. Could DAW (dorsal arachnoid web) be the after effects of this?

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Profile picture for pmross @pmross

My daughter became paralyzed from the waist to her knee. Stanford hasn’t been able to diagnose her after 18 months. Many ct scans, MRI’s and mri with contrast from head to toe. One doctor thought she might have scoliosis. Nothing came of that.

I was reading about DAW and I believe is said if you had previous injury or infection. She had meningococcal infections at 3 years old. Could DAW (dorsal arachnoid web) be the after effects of this?

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pmross, yes. you might pursue specialized imaging. You may need (CT) Myelogram or a high-resolution 3D MRI utilizing heavily T2-weighted CISS or DRIVE sequences. Scans highlighting cerebrospinal fluid flow to visualize the location of the web. You could have second opinion of current imaging by a neurological surgeon with expertise with dorsal arachnoid web.
Nice detective work mom.
Lucky daughter.

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Profile picture for pmross @pmross

My daughter became paralyzed from the waist to her knee. Stanford hasn’t been able to diagnose her after 18 months. Many ct scans, MRI’s and mri with contrast from head to toe. One doctor thought she might have scoliosis. Nothing came of that.

I was reading about DAW and I believe is said if you had previous injury or infection. She had meningococcal infections at 3 years old. Could DAW (dorsal arachnoid web) be the after effects of this?

Jump to this post

Thank you for giving everyone hope!

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Profile picture for pmross @pmross

My daughter became paralyzed from the waist to her knee. Stanford hasn’t been able to diagnose her after 18 months. Many ct scans, MRI’s and mri with contrast from head to toe. One doctor thought she might have scoliosis. Nothing came of that.

I was reading about DAW and I believe is said if you had previous injury or infection. She had meningococcal infections at 3 years old. Could DAW (dorsal arachnoid web) be the after effects of this?

Jump to this post

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For anyone that has been diagnosed with DAW is fatigue part of the symptoms???

I believe my daughter has this and is the after effect of meningitis.

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Profile picture for pmross @pmross

For anyone that has been diagnosed with DAW is fatigue part of the symptoms???

I believe my daughter has this and is the after effect of meningitis.

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@pmross - I moved your post here so that you could interact with other members also talking about DAW:

- Experience with Dorsal Arachnoid Web (DAW) in T-Spine?https://connect.mayoclinic.org/discussion/dorsal-arachnoid-web-daw-in-t-spone

You mentioned fatigue your daughter is experiencing. Is she also experiencing other symptoms?

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Yes anxiety, partial paralysis fro me waist to her knees. She was Hypokalemia controlled with medication. She did have meningitis when she was 2 1/2.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@pmross - I moved your post here so that you could interact with other members also talking about DAW:

- Experience with Dorsal Arachnoid Web (DAW) in T-Spine?https://connect.mayoclinic.org/discussion/dorsal-arachnoid-web-daw-in-t-spone

You mentioned fatigue your daughter is experiencing. Is she also experiencing other symptoms?

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@lisalucier thank you

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