Quote:
Originally Posted by baseballfan
Hi, I do know a person in one of my facebook groups that had both of his legs amputated. A form of treatment to try for your RSD that is not invasive is calmare therapy
|
Hello~ my 16 yo daughter has CRPS and has had it for over 3 years. We have done every treatment available, including Ketamine (both low and high dose) infusions (8 times), IVIG, high dose IV steriods, IV lidocaine, multiple injections, blocks, therapy with no positive outcome. She has become bed ridden, cannot go to school, cannot do school work, cannot enjoy her teenage years because the pain is so bad it cripples her. She has it in her right foot/ankle, her toes have become dystonic and she has lost the ROM in her ankle. I go into her room every night when she is in deep sleep and manipulate her foot/ankle/toes. About a year ago I found Calmare Therapy and was reluctanct to try it, but thought what the heck we have used everything else. We were very surprised wth the outcome. It truely does work, although not for long, but she had 3 months of life back! I have found that the person doing the therapy needs to be very experienced. The electrodes need to be in the right spot, and moved around to get the right "feeling" when the machine is turned on. We have been back to RI 3 times and are going back for our 4th session. Ketamine infusions interfere with the calmare signal, so that is why she is having a difficult time holding on to the non pain stimuli. The last time we were there the nurse that was administering it could not find the "right" place for the electrodes until our 4th day there. So please don't give up hope. Once you respond to Calmare you will always respond. This treatment is a miracle tx for us(a bit expensive) but worth it!Good Luck!!!