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| 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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04-05-2009, 08:14 AM
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When I first saw Dr. S he wrote on my report, appropriaely depressed given her pain. So being rejected for depression is so very odd. Its horrible the ketamine infusions are really only effective for alloydina. They virtually took mine away to a large degree. Things have changed up there, did they test you psychologically? When I went they did, xrays, themograph, vibration tests, heat and cold tolerance. And some strength test- no psychological testing at all. I was certainly depressed and was on antidepressents. I think someone really screwed you. I dont think anyone there has the right to tell you -that you are rejected because you are depressed.It makes no sense. I would send a letter directly to Dr. S and tell him what you were told. That is just not right. If you read any of his publications he always mentions the severe depression that comes after acquiring RSD. I am sure that someone really screwed up. I would be devastated if that happened to me. I know that Dr. S feels the 10 day and 5 day infusions are not strong enough to help those of us that have full body RSD. That would be more likely the reason they didnt reccommend the program for you.Is alloydina a problem that you have? IF so thismakes no sense at all. I relly would write the doctor directly. After all the money you spent for the appt. and the diffuculty of travel for you you deserve some answers. Again im so sorry to hear about this, hang in there, Sincerely CZ |
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| "Thanks for this!" says: | LordWood (04-05-2009) |
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04-05-2009, 11:44 AM
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I talked to Dr. S himself about this and yes there is a psych testing now. If you want to hear something even more messed up the psch doctor himself told me i passed and he went out and told my mother i had passed no problem. Than Weeks later when i was suppose to hear from them for the date of treatment i called and they said they still didnt have the psych results and than waited alittle and called again never got an answer back. Than one friday got called saying i would receive a call and letter in the mail. Waited over a week never got anything. Called back and called back didnt get answered and than days later got a call from a nurse who told me one of my tests didnt get passed she said it looked like the psych test and that i would have to call schwartzman about it and i did and waited for a call from him. Once he called he spoke exactly the same as the nurses. The fishy thing is the psych doctor said i passed. Plus why did it take so long for his test to get "finished" in all reasoning i know Dr. S is the one that pulled the string and didnt want to treat me cause iam full internal body and he wasnt confident in his program so he wanted something to hide behind. Hes a disgrace of a doctor and even though hes studied rsd for 30years he proved to me even after all that he still falls flat on his face as an rsd doctor. |
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04-05-2009, 12:28 PM
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I went to a PM Dr. in Co. Springs once and he sent me to see a Psych Dr. also before putting me on Moraphine for my pain. The Psych Dr. gave the ok and the PM Dr. still wouldn't give it to me. Since then I have been on everyone of the meds out there. My PCP let me try them all.
I agree. If Dr. S even thought that the Ketamine could help people full bodied, you would think he'd try it on them. No one is going to be cured with it anyway. There is no cure. I do hope this finds you doing better. Hang in until you get to see this next Dr. Ada |
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04-06-2009, 07:30 AM
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I have had TOS for 10 years. I have had the rib resection and scalanectomy. I was actually pain free for about 5 years, actually had a baby in that time. Due to stress, pain came back and Dr. S diagnosed me with RSD. He said I need the 10 day infusions. I am scheduled for the beginning of September and am very afraid. I have been reading all I can on this and other sites and don't know what to do. I am 45, have 4 children and have not heard anything positive. I don't want to live on pain meds forever but am trying to research my options. Lordwood, I appreciate your insite. I would love to hear more of any information about his studies. I am in pain constantantly and it's hard to convey to others. No one seems to understand how everything can hurt all the time. Any information would be great. Thanks, Linda
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04-06-2009, 09:14 AM
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I did the 10 day 4 hour infusions about a year ago. I wasn't one of the lucky people that got relief from my pain. On the third day I had a reaction the Ketamine was stopped for about 30 min. On the 4th day I completed the 4 hours and Dr. S decided to stop the treatment all together. It wasn't helping my pain level had not improved. They give you versed (spelling ?) to help with the side effects of the ketamine. I had my mp3 player on and the worst part was how real the dreams seemed. You may have experience that feeling from some of the meds you have tried. It is hard for others to understand how bad our pain it. They love us and know we hurt but there is nothing they can do. There is good information on the RSDS.org website that may help them understand. Take care  Sherrie |
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04-06-2009, 08:57 PM
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Dear lordwood,
I hear ya! I agree with you and have found Dr. S's office to be really either overwhelmed or incompetent in the last two or so years. I was told in 11/06 that I would definately be inpatient for Ketamine in 1/07. I called midway through the month and they about laughed at me! I was in agony and cried for days. And like you said how can you have rsd and the problems we all have and not be depressed?? Duh, the two go hand-in-hand as you well know. Just putting up with all the ins and dr crap makes me depressed but like you and the others I go on. I try to give myself a timeout and shut everything off and lie in the dark and pray and meditate for an hour or so and then start back up again. It sucks I know. I had to laugh because I just sent back all my 567 questions about depression too. I guess I will be out in the cold with you too. And like Sherrie said Dr. S. looked at me and said go to Germany. First of all, I don't have that money to spend and second of all, it scares the crap out of me. I don't want to be a statistic. I could never handle the ride over there on a plane. I would be dead from pain. I think you live near me. I live 13 miles NE of Philly in PA. Where is Dr. Harbutt's office located? I still have not had the Ketamine treatment. I am trying other things like chiropractics and it helps me alot but not enough for the ins co. I am praying the chiropractics works and one day I will wake up and not have any pain ever again!! However, I have to be realistic and listen to Dr. S. because he has studied this longer than I and I know it will be a lifelong thing to deal with. Well, you hang in there and take care of yourself. Maybe a lordwood-out might help ya. Just give yourself time and regroup. Dr. Getson is in New Jersey and he is an RSD specialist that studied under Dr. S. Maybe you could call him. Let me know and I'll get you the number. Take care, kathy d  Quote:
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04-06-2009, 11:38 PM
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04-06-2009, 11:58 PM
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Alot of you and even i originally thought Dr. S is the big Shabam or top dog of Ketamine but guess what hes not. Dr. Ronald Harbut was one for the first 2 to actually start the idea and get it to be used in the US. Schwartzman is simply a student of Dr. Harbut's. I am so glad i didn't go for schwartzmans program i would rather wait and have it done by a true RSD professional. Schwartzmans program is so fishy he does it outpatient and does it 4hours a day for 10 days. Harbut does it inpatient and for constant over a 4-5day treatment. So i dont know about the rest of you but i am willing to wait for Harbut's program to open in the fall and go with it. There is still hope for those of us advanced.
Here: http://www.rsdhope.org/Showpage.asp?...1&PGCT_ID=4197 |
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04-07-2009, 02:37 AM
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I had a one day ketamine infusion in LA with Dr. Leverone. it last 4-5 hours and i was in remission for 2 months, and off all meds. because i was on ketamine for 2 years i had a tolerance, and never reached the ideal state during the infusion, which may or may not be why it only lasted 2 months. but i am in the process of scheduling another for the end of the month. and i didn't have to have a psych eval for this. i only had to have one before i had my SCS implanted 4 years ago... which was then removed a year and a half after being implanted.
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~*Andrea*~ |
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04-07-2009, 09:47 AM
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#30 | ||
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So much information. I have been put on a waiting list for Dr. S for September. I am happy I have this time to figure it all out. It is very scary. I appreciate all the information you have given me. I feel very overwhelmed. Linda
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Lordwood, so sorry for your pain,
how is any RSD patient not depressed? Only those less than 2 years into it can be the ones not depressed at all. I'm irate and not alone my doctors are as well and my past therapists are going to be brought back into this equation. I've been on over 7 antidepressants and gone through therapists all to the conclusion that my RSD needs to be taken out of the equation before my depression can go away. What i find funny is the doctor which conducted the test to which i didn't pass, told me at the end of it that there was no problem and that without question i had passed. I've meet kids in Dr. Sherry's program that had went to schwartzman first and it failed for them, they than went through sherry's program and were cured. Should i really be surprised schwartzman should chicken out in the end. Every pain clinic i go to look at my file and go your to advanced. Its no wonder schwartzman would do the same. I passed all my clearances schwartzman is pulling this ******** cause hes unconfident in his own program i saw it the first time i had an appointment with him. All he did was keep instilling he was working with the FDA on other treatments that he could try. For a specialist that's been quote on quote studying RSD for 30 years i find it hard for schwartzman not to have seen all RSD patients depressed. The good news is i have had another RSD specialist on the back burner ready in case schwartzman pulled something which i am glad i had. Dr. Ronald Harbutt he does a similar ketamine treatment. His program is not up until this fall but at least there is another. I am severely disappointed in Dr. Schwartzman, he definitely was not worth the wait nor would he have been work a weeks wait. From what i've seen and from what i have learned from other patients it seems unless your rsd is in one or a few spots than schwartzman's program will work and even than it fails quite often. Good luck to the rest of you.
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