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Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

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archie2 | @archie2 | 21 hours ago
In reply to @sophie46 "I too have Adhesive Arachnoiditis. In 2015 I was having my third fusion when my dura..." + (show)
@sophie46

I too have Adhesive Arachnoiditis. In 2015 I was having my third fusion when my dura was cut and I had a spinal fluid leak. I am told this caused my AA. My bowels no longer work and my bladder has difficulty emptying. I could walk miles, but can now only walk the length of my rancher. For pain control I take methadone, which was recommended by a pain clinic. My doctor has lowered my dose and now it doesn't ease the pain. which it did at the higher dose. I am so sorry you are living with AA. It is not for sissies.

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Hi— don’t worry, all AA stories seem to be long I was Dx‘d in 1978. Truth is, AA is caused by trauma from surgery to the spinal cord, blood in the surgery wound, detritus from imaging fluid and aging. It can change, mutate and get worse. I find that the pump helps a lot of back pain from nerve damage, but not so much with AA. Thus the use of SCS as adjunct modality of treatment. I have Dilaudid in my pump _ has worked well for 18 years. States that limit the range of analgesics and want you to subsist on methadone and cognitive approach’s to pain control mean well, but don’t understand AA— they need to bring the best meds because AA is the worst.
Please keep in contact— hard to hurt my feelings or surprise me after 50 years of AA. Don’t give up! You have a good grasp on the disease— educate your local Pain Mgt physician— I’ve done it. Done give up, get active and become your own best advocate.

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