A few questions

[Guest guest]

Hi Everyone,

It's almost 3am and I'm still trying to get some sleep. I'm so tired of being tired all the time because it hurts so much to lay down and then I can only lay on my right side with my head elevated. I usually sleep sitting up, leaning forward on my coffee table. I would give anything to lay flat and stretched out on my bed. I went today for a bone scan, but because I can't lay flat on my back, the tech only scanned my right forearm. I was looking forward to seeing how my bones in my spine are. I'll get the test results tomorrow and get a copy to send along with my films and some records to Dr. LaGrone.

My question to you.... Do any of you have Arachnoiditis or RSD. I developed Arachoiditis almost immediately after getting a myelogram 2 months before my fusion surgery. Then I got RSD (Reflex Sympathetic Dystrophy) in both feet after the surgery. The Arach.. has progressed into Adhesive Arachnoiditis in my lumbar spine and it is possible I could have it elsewhere in my spine and brain. For those that don't know what Arach..is please goto http://www.burtonreport.com/InfSpine/AdhesArachIntro.htm It is even possible some of you may have Arachnoiditis, since this is one disease doctors don't want to talk about and some even deny there is such a disease, because it is doctor induced and also because radiologist report it as scarring. I had to send my films off to Hopkins Neuroradiology after one doctor suspected Arach.., to get a definite diagnosis. One neurosurgeon told me he wouldn't do any surgery on me because of the arach... so I worry that if I can get in to see Dr. LaGrone, that he might not want to do surgery either if necessary. Diane B. also has Arach., and I was really surprised she was able to have revision surgery.

I also have RSD in my feet, which I think is worse than Arach., for me. Both feet are dark purple and the muscles look wasted as my bones and ligaments really stand out. My toenails are deformed, thick and brittle. They are numb, yet it feels like I have glass and rocks in my slippers when I walk. I have constant burning tingling pain and the slightest cold will sky rocket the pain. In my left leg it has advanced to almost my knee and the other half way up my calf below the knee. Every doctor that first sees my feet thinks I'm diabetic, but I'm not. The really funny thing is, my feet never swell even when I have gone days without putting my feet up. When I do try sleeping in bed, having my feet up escalates the pain, so I will wake up after an hour or so in worse pain. It is because of the RSD that I sleep sitting up, so I can keep my feet on the floor.

I didn't mean for this to sound like I'm whining and crying. I want to know if anyone else has other diseases and did it effect or makes worse after having revision surgery. I'm praying Dr. LaGrone takes me and can do revision surgery, as I can't take sleeping the way I am and also being so bent over. Also I'm 65 and worry maybe my age will keep me from getting help too.

You all are so great in sharing and helping everyone. It feels like you are one big family and are there for each other. How wonderful and amazing.

Pat E. .