Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-15-2010, 10:09 AM #21
bigsav32 bigsav32 is offline
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Originally Posted by General View Post
I ended up in the ER 3 weeks ago two nights in a row with pain so bad I seriously wanted them to amputate the foot and I would take my chances with phatom pains. Fortunately, a procedure we'd been researching for two years and begging to get into the trials of, was recommended to us in the ER. It's a Kedamine induced coma. I was placed in a coma for about two days while they introduced the Kedamine to my system as well as performing a rapid detoxification of my system. I never realized that pain medicines can eventually turn against you and cause you even more pain. I won't lie to you. There are side effects such as short term memory loss (I don't remember the entire week before I went into the hospital), some holes in long term memory, vision impairment and some dexterity issues. Most of these are short term and you'll get them back. The only thing hanging over me now is the loss of memory, which is certainly a rather odd feeling. The good news is however controversial this treatment may be, I am currently in remission with about 90% of my pain gone. I am walking for the first time in two years without a cane. I HIGHLY recommend looking into this procedure. It scared the hell out of me, but I am so happy to be without pain for as long as this will last. Take comfort in knowing that this disease is one of the most studied diseases at the moment and many new trials are be conducted all over the States. Doctor Ian Black brought the treatment to Vermont from Texas and I was the third person to ever have it done here. I hope some of this help you and you'll be in our prayers. God Bless.

General
thanks,for your column,for i am scheduled soon an just didn't know what to expect.still a little worried
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Old 10-21-2010, 01:54 PM #22
Swatgen27 Swatgen27 is offline
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Krank
I live in Aurora IL and I have seen Dr Lubenow. I saw him after all treatments failed and part of my new criteria for treatments is they have to be non-invasive. Dr. Lubenow agreed and offered Ketamine as a treatment. I was told to do it once a week for 3 weeks and then we would review the progress and go from there. Not once did Dr. Lubenow administer the treatment and the hospital was unable to get me scheduled for three weeks in a row so between the 2nd and third treatment a week lapsed. I had great results with the first and second one and was able to cut down my meds by 50%! But because I skipped a week between two and three it was not as successful. Dr Lubenow did not like that the success decreased and said that the next course was for me to do an invasive 5 day treatment with a cathadar in my spine (like a nerve block but more invasive) and when I said no to the invasive treatment he was enraged! He told me that I would die before I'm 30 and that I was hopeless and walked out of the room. I was so shocked and outraged that I never looked back. He has a horrible bedside manner and be careful if you have your own opinions on your treatment plan. This all happened in February 2010. Good luck with him as I found the whole thing traumatic. When he told me about the 5 day spinal cathadar treatment he did not say that they would still administer Ketamine. If that is what he is doing let me know and then maybe I will agree to the treatment.

Last edited by Swatgen27; 10-21-2010 at 01:55 PM. Reason: Add the person to whom Im responding too
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