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I am new to the board. I am a 30 year old woman. My name is Michael. My story starts 19 years ago. I was 11 when I started having pain. Iwas diagnosed wtih scolosis at 12. Scolosis is curvature of the spine. I have 2 curves one in the thoraic and one in the lumbar. My first surgery "corrected" the top curve from T1 to L5 I was fused. Then when I was 19 10 and half years ago I had the lumbar surgery from L5 to L1 was fused. Shorthly after this surgery the burning and tingling started. My orth doc at the time said it was nothing to worry about and it would go away. Boy was he wrong! I was offically diagnosed with arachnoiditis last July after a CT myleogram. I can't have a MRI because of the metal. The doctors acted like arch was nothing. they told me it was inflamation of the archnoid layer of the nerves and that's it. I started doing research on it myself a few weeks ago. After the CT Myleogram they told me I also have stenosis so from last July until a few weeks ago I was trying to find out as much as I could about that and decide if I was going to have the stenosis surgery. I am glad that I decided not to have that surgery. I have a good pain doc he's not very open about the arch but he does listen to all of my symptoms and then tells me who I need to see, what test needs to be done, or if I need a new med, or a change of meds. He is setting up an app. for me to see a neurologist soon. I have bladder problems now and have to use a cath at times. I am also devloping bowel problems. I have constant pain and everyday things I used to take for granted are now huge efforts. I am trying to be optmistic but it is very hard to do.
My husband tries to be very suportive but he doesn't know what it is like to live in constant pain. My friend are trying to understand what arch is and how it effects me. It has been a long up hill battle to find out what is wrong with me. I am glad that I have found a place where I can talk openly about what is going on and have others who truly understand it.