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adhesive arachnoiditis

  • Deborah Ashton
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3 weeks 4 days ago #29012 by Deborah Ashton
Deborah Ashton created the topic: adhesive arachnoiditis
I have recently been diagnosed with a condition called adhesive arachnoiditis. I have a long history of lower back pain, 2x level lumbar fusion 1x fusion sacro illiac joint. Many complications from surgery from infection MRSA. I have neural pain down my right leg burning in my foot. i sweat a lot, have severe IBS, Insomnia, weight gain, muscle weakness and cramps, blurred vision. Apparently all of these symptoms are related to this condition. It has been deemed rare but if you have been labelled a "failed back surgery" maybe you have this too. I would love to hear from you if you have this problem cheers Deb Ashton
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1 week 6 days ago #29077 by di
di replied the topic: adhesive arachnoiditis
Hi Deb,
I'm so sorry to hear you have AA. That's the third and excruciatingly worst stage of this dreadful disease.
I was diagnosed 8 years ago. Mine is chronically painful still but it's the arachnoiditis stage - not the full blown AA and I hope mine won't progress any further... No telling with this awful disease. For those not familiar with arachnoiditis I've copied the 3 stages of the disease to explain it in more detail.

Effectively there are three main stages of arachnoiditis as follows:

First Stage — Radiculitis: The spinal nerve roots are inflamed in response to an event such as surgery in the area and the adjacent blood vessels distended (hyperaemia). The subarachnoid space is encroached upon by the swollen nerve roots and practically disappears. Deposition of collagen fibrils begins. Substances in the body involved with inflammation can sensitise nerves, and these nerves begin to fire abnormally.

Second Stage — Arachnoiditis: The scar tissue increases, and the nerves begin to adhere to each other and the dura. At this stage they begin to resemble strands of overcooked spaghetti sticking to each other and local tissue.

Third Stage — Adhesive Arachnoiditis: This involves complete encapsulation of the nerve roots by scar tissue with the subsequent smothering causing them to atrophy. The scarring prevents contact with surrounding spinal fluid and severe adhesive arachnoiditis may be obliterative, causing completely impeded CSF flow within the affected area. The isolated nerve roots are therefore starved of oxygen and nutrients and waste products of metabolism accumulate. There may be cysts containing CSF or oil-based myelogram dye. There may also be calcification or ossification of the affected tissues.

I wish you nothing but the very best Deb and please keep posting.
Di ♥
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1 week 4 days ago #29086 by zebrastripey
zebrastripey replied the topic: adhesive arachnoiditis
Hello,

I am so sorry to hear you have this. I would really like to hear from you too. I am curious how you came to be diagnosed and would welcome any information on any doctor in Australia that has any understanding, ideas or the honesty to diagnose this. I can recomend reading the work of an amazing pain doctor in America 'Forest Tennant'. You may already be familiar with his writing and advocacy for arachnoiditis, also the NZ based Dr Sarah Smith who suffers with it herself. A good reseource for active management try googling ' arachnoiditis handbook for relief and recovery' which Dr Forest Tennant puts out as a public service on the internet. The survey was an eye opener for me. I have all the symptoms you describe & it has really made my day hearing your post as it is hard to describe what life is like with these things and trying to get even the most empathatic doctor to understand the experiences some days. I now try to accept how unpredictable daily life is even with a positive attitude and veteren level pacing -which we all must learn over and over again. Do you have it effecting your autonomic system too? Thanks for posting I had a bad day it really helped to hear from others today. The 'art for arachnoiditis site' is another source of inspiration and hope for me that people with this can survive and even thrive...we sure need a dose of that. I do. I was very sad earlier but I feel better hearing from others & sharing the resources that help me have some hope. Take care & wishing everyone out there a lower pain day.

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1 week 4 days ago - 1 week 4 days ago #29087 by zebrastripey
zebrastripey replied the topic: adhesive arachnoiditis
Hello again,

I wanted to ask for some help. I live in a regional area and would be willing to travel to see a doctor that has an understanding of this disease. If anyone could point me in a helpful direction or resources anywhere within Australia please PM me or respond within whats okay to put up. Thanks again for your post Deb and nice to read your post Di, I am new to posting here on the forum but it seems such a great supportive site. Any ideas appreciated.
Last Edit: 1 week 4 days ago by zebrastripey. Reason: typo

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1 week 2 days ago #29093 by di
di replied the topic: adhesive arachnoiditis
Hi zebrastripey,
Gosh... Sounds like you've done a lot of googling!
Be a bit careful, although common, all too often this leads to distress and inevitably, selective use of gathered information for a self-diagnosis, is completely wrong!
Please take the time to properly research your options, starting with your own GP. If they don't help find a local GP that will, because you can't see a Neurologist with out a referral from your GP.
Ask your GP for a referral to a Neurologists (they will know one). The purpose is to have an MRI - the Neurologist will send you for one. That's a good place for you to start...
All the very best zebrastripey and please keep posting.
Di♥

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