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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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09-15-2008, 07:13 PM | #21 | |||
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Just to update.. we went back to the ortho doc today, and the PM doc. Ortho says he has no answers, and PM doc is taking an extended leave of absense, but is referring Reed to another PM in the same city. He said that obviously the nerve blocks did not do what they were supposed to because Reed's pain is not only nerve related, but also involves bone, muscle, and sensory. He said that SCS is basically the only hope he has of getting relief and any sort of movement back. They are sending in a request for approval for trial SCS. Of course, this brings up a whole new set of questions.
He also raised his neurontin dosage and said he wants to see if this gives him enough relief to help him sleep . If not, then he'll have to give him sleep meds also. I guess now we wait to see if WC approves the SCS. Any info on SCS as always, is appreciated! Thanks for all your help guys.. ya'll are fantastic! |
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09-15-2008, 09:06 PM | #22 | ||
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Hello Rita,
Welcome to a wonderful place for caring and sharing regarding this monster known as RSD. It is good that you found this forum! One thing that I would like to tell you right up front is that you all should not feel pressured to make any rash decisions regarding a SCS or any other option. Ask lots of questions and by all means get a second opinion from a doctor of your choice! Remember the WC doctors will not necessarily have Reed's best interest at heart. So proceed with caution. Read as much as you can about treating RSD so that you all will have some basic knowledge of treatment options being offered. Finally, I agree with Gymjunkie about 4-months not being a long time. There is no magic bullet for this condition. What will work for Reed may be totally different than someone else. It took about 2.5 years for me to get decent pain control...but it was worth it. Best wishes, EJ |
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09-17-2008, 10:32 AM | #23 | |||
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The doctor he is seeing wasnt referred by WC. So far they havent pressured him to see their docs. I know it's coming though, we've been warned. The doctor Reed is seeing next is to get another opinion. We've had 2 docs tell us he needs the SCS..apparently his RSD is progressing very quickly. We see another doc on Friday for another opinion.
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09-18-2008, 08:04 PM | #24 | |||
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Rita,
I have the scs. I've had it almost a year. It has given me my life back. far better then I hoped for. I won't say that recovery is easy, because it isn't. there are a lot of restrictions, but if one follows their drs. insturctions, then it should be fine. For almost 4 years I was in bed or a wheelchair. Now I'm back to taking care of my horses, and taking care of myself. It takes so much longer to do things, but at least I can do some of the things then I used to be able. I always recommend that you try the scs. If it works, then you know, if it doesn't work then again you will know. Yes, you are a bit uncomfortable after the trial, but after so long of not being able to take care of anything, I was able to get out of be on day 3/4 and walk thru a home and garden show with only a cane. I actually put on shoes and socks which I haden't had on in years. I love mine, and I don't think I could keep going on with out. Again...that's why they had a trial, to see if it does work. Please keep an open mind. Hugs Mary
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09-20-2008, 11:20 AM | #25 | |||
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Thanks Mary! We went yesterday for the second opinion, well, 3rd actually..and this doc agrees with the SCS recommendation. Not sure how to feel about that, but he did give us alot..I mean ALOT of information. He told us from his experience what to expect from WC, and that they will not be happy about the SCS. He set up an appointment for a psych eval, and said it would probably be near Christmas before everything was ready to go. He said Reed has to follow WC protocol, including the meds that havent been tried. He changed his neurontin to lyrica, which is keeping him awake even worse than before.. and cymbalta, and clonidine patch, niether of those he's started yet. The doc doesnt expect too much from them , but says they have to be tried. He told Reed that from the bone scan 2 months ago, his RSD has definitely progressed, and has spread to his knee (which the last doc was hesitant to say it was RSD there). The temp. changes and color changes and swelling are proof enough. he was also open to the idea that the nerve block may have caused spread to his right arm. This all just happened, and it's moving so fast I'm terrified. I'm just praying that everything goes well with the SCS, and WC approves it. This seems to be the one hope he has of walking again. The doc also warned Reed that trying to walk now, with all the numbness and everything else might not be the best idea, since a simple sprain can cause the RSD to go haywire. He suggested that he definitely keep it moving, but not trying to walk. he gave us some home therapy ideas, and said that I should gently exercise his leg several times a day. He seems to know what he's talking about, and he educated us on things we hadnt read about. So.. fingers crossed, and many prayers going up that everything goes well.
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09-23-2008, 04:25 AM | #26 | ||
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09-24-2008, 06:05 PM | #27 | |||
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Thanks Loretta It looks like we are entering a whole new phase now. Reed started the clonidine patch yesterday, and his bp bottomed out soon afterward. It stayed very low today, and when I called the doctor's office to discuss this, the nurse told me she was going to speak to the doc and call me back at work. Instead, the doctor called me and told me to go home, remove the patch and check his bp every 15 minutes and check the color, since his foot had been turning black slowly and today it was much worse. So now, his blood pressure is back near normal, and the color is a little better but the doc is concerned that the injury may have caused a blood clot . He has to go in to see the doc tomorrow (he wanted to call a cardiologist and radiologist to get input before he sees him) and they are planning to do a vascular doppler at least, and preferably an angiogram. The pm doc warned us of the risk of spreading the RSD with an angiogram, but he said it was a risk that he feels has to be taken.In the meantime, we are checking bp every hour and he's not to be out of bed. If things turn worse over nite, he will be admitted immediately. I wonder if things are ever going to calm down.
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09-24-2008, 07:41 PM | #28 | |||
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Elder
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Hi Rita and Reed...
Just wanted to stop in and let you both know that I am thinking of you. This RSD Monster is so unpredictable.... I could not take the clonadine as I already had low bp... How frightening for both of you. I pray you find an answer and things calm down for both of you. Gentle hugs, Abbie
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09-24-2008, 07:58 PM | #29 | |||
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Thanks Abbie, I hope so too, and I hope everyone here is having a peaceful and pain free night. |
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