I just joined today I have CRPS 2
I have had RSD for almost 6 years. It was caused from an injection in my second R/ Toe. The doctor hit the nerve. Immediately it went up my leg thru my bladder and down to my left foot and toes. They turned red and cocked up on both feet within seconds. The nurses were afraid for me, but the doctor never came back in. He ordered hard orthodetic's and hard tennis shoes. I went home and laid down on the couch with a towel. I wet the towel and wet the bed and my husband that night. that hasn't happened again. They said I had Raynauds disease. I had a bone scan that said I had bilateral dystrophy. It is now in my knee's and up the sides of my legs from previous injuries.
I went to Tampa to the RSDHOPE ORG with DR. Kikrpatrick this last Sept. 2011. I had a 4 day ketamine infusion therapy with my brother and friend with me. $10.500. plus car and hotel and food and air fare from Seattle. About $15,000. total. It only helped a very short time and it all returned. I had a SCS put in with paddle lead at T-11 after the pain doctor messed up and left the other leads way too far bialterally to the left. This would have only stimulated my abdomen. The Reps told her to remove the lead wires. She cussed a few words. They though I was asleep, but I heard everything.
She had doubled my pain meds before the trial. The trial went great so I wanted the implant. It ended up after the neuro fixed it stimulating my rear end and private area's too. I was told by the neuro and the reps to just get used to it. I would like to see them get use to it.
My pain doctor has me on oral ketamine. A 10 day trial plus the nasal spray. The oral is 80% removed from your system right away. Ketamine has a half life of 2 and a half hours. I am searching for a doctor in the south of Seattle who does ketamine infusions. The rep said there are many, but would not tell me who they are. If any one knows of one please post for me. IF hell were on earth it would be RSD. I want my life back and to help others who have this horrid disease.
My friend in Denver has it full body. She is only 32 with two small children. She went to Dr. Kirkpatrick before I did and was a lot better for a few days. She came home and it all came back. Her pain doctors and her neuro are giving her high doses of oral ketamine and high doses of the spray. She must stay in the dark and can only shower once a week. WE are planning to go to LA or SF to DR. Leverone, but if he is no help with the 10 day infusions what is a person to do? I know you have to keep the ketamine in your body at a level to help the pain at all times. Please if anyone knows a doctor in Seattle that does these infusions please contact me. My PCP has come up with another way to get the ketamine into a person system without it going through your stomach. I talked to the compounding pharmacist and he can do it. Thanks for listening to me. If I can help anyone with what I have been though please let me know. One thing I do know is that SCS do not help CRPS for more than 3 months most of the time. It can also spread the disease in some people. Don't have any surgeries unless it is life or death. Have then use Ketamine for your surgery. The highest amount they will use and have them use it for pain afterwards with other pain meds. This is what I have learned in the last few months. Your friend, hear4