D
deb53
Guest
Hi my spiney frienRAB,
Several of you have been kind enough to ask how I am. I'll try not to write a book but.....
I'm still in a significant amount of pain most days. I'll get a good day every now and then...a "2" , most days a 5-6, lately a 7-8
I can't walk very long, stairs are awful, by 4:00 in the afternoon I need my cane as my legs hurt so bad and I don't want to fall. My right foot starts to scuff after 10-15 mins of walking. The surgeon has said that there are no surgical options, a second radiologist looked at the MRI and feels it is scar tissue. Permanent nerve damage according to EMG. One neurologist feels that I have a "plexus" which simply means that my nerves don't innervate like the dermatone chart shows. This may explain why I have pain in BOTH buttocks, legs and toes. Right side is still worse than the left but it is definitely the very distinct rotten nerve pain that so many of us deal with. I saw another neurologist last week and he also feels it is scar tissue. He wants to review all my MRI's himself, he listened for 45 minutes while I told him my "story" and took notes. He wants to come up with a plan and will call me. He may also recommend the spinal cord stim and if he does that will be 4 doctor recommendations for the SCS. I may have to try it even though I am very nervous about it. He also may offer me a long acting pain medication but since I am so sensitive to ALL meRAB, finding one that I will tolerate may be a challenge. He also may Rx Topomax although the Lyrica and Neurontin didn't work out for me.
Had to take my Mom to the ER today....my daughter found her at home disoriented, drooling.....either a stroke or her diabetes is out of control....we'll know more tomorrow. My aunt (Mom's sister) having surgery for colon cancer on Tuesday. Lots of other issues, a lot on my plate right now and suffice it to say the pain continues to run my life even though I try to put it in the background. So I'm waiting to hear back from the neurologist with a plan of care. Bottom line is the pain is mine and will always be a part of my life. Hard reality to face.
Deb
Several of you have been kind enough to ask how I am. I'll try not to write a book but.....
I'm still in a significant amount of pain most days. I'll get a good day every now and then...a "2" , most days a 5-6, lately a 7-8

Had to take my Mom to the ER today....my daughter found her at home disoriented, drooling.....either a stroke or her diabetes is out of control....we'll know more tomorrow. My aunt (Mom's sister) having surgery for colon cancer on Tuesday. Lots of other issues, a lot on my plate right now and suffice it to say the pain continues to run my life even though I try to put it in the background. So I'm waiting to hear back from the neurologist with a plan of care. Bottom line is the pain is mine and will always be a part of my life. Hard reality to face.
Deb