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Started by Sirena on 08/06/2012 10:07pm

I have recently been diagnosed with this and just from the few sites on it, that I have read...it is called a disease and I am in the second stage of 3 stages.I want to learn more and I want to be fixed. It said surgery may help for a bit, but ultimately could make it worse by putting more scar tissue around the bunched up nerves making them stick together (adhesive arachnoiditis)(3rd stage)
Is their anyone who has this? Can someone please tell me, is their a way to cut down on the pain? There is never a minute of the day or night, that I do not hurt, nor is there a minute of the day that I am ever comfortable. I have lots of trouble sleeping because it hurts even worse when laying down.
If anyone has any kind of information on this, please let me know and if you know a neurosurgeon that is an expert with this particular condition, please tell me his/her name...I am in the Birmingham, Alabama (USA) area...
Thankyou :)

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1 Response


Hi Sirena,
First of all let me say welcome to the world of Spinal Pain... I'm sorry that you have this chronic disease... I also have A.S. Arachnoiditis. I am stage 3 ... I was diagnosed about 6 years ago.

unfortunately there is little out here for the chronic sufferer and even less for ASA... there is not a lot known and no cure.. some treatments are even known to worsen our condition you need to be extremely cautious as to your choice of doctors treating you.

i would like to continue discussing this with you over email if you would like to.. there are not many who want to share about this debilitating disease.

I have extreme burning pain in my lower back with numbness and tingling in my legs.. i also have the feeling of something crawling on my legs and hot water dribbling down my legs... its a very strange sensation... and uncomfortable... I am always looking for spiders on me lol...

i do not sleep well.. i do not sit long nor stand or walk long... it's a situation where nothing works for very long at a time...

I had to have two milograms done in the late 70's early 80's and we are basing the start of the A. on these two tests. (the oil based dye that was used to do the test at that time)....

however wretched this disease is . it is nice to finally find someone I can talk to who knows what I am going through.... what I am feeling...
take care