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 10-14-2008, 09:35 AM #1
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I haven't been around in awhile..everything has been so hectic at home I'm not sure which way I'm going anymore! lol
Reed had more testing last week, to make sure he didn't have any blood clots, damaged arteries, etc in his leg. The results looked very good, but his PM doc says he wants there to be absolutely no doubt before he considers an SCS, so Reed will see a vascular specialist on Friday for more testing. If these come back clear, then the PM doc is hoping to have SCS trial scheduled for late October, early November.
While part of me is thinking "more tests?! ugh!", I am actually glad that the PM doc is being so thorough and careful. It eases my mind to know he's looking out for Reed.
Meanwhile, the new meds seem to be helping somewhat, with swelling anyway. The pain isn't really better, but Reed's vain side is happy his leg doesn't look as bad. lol Plus, the Lyrica and Cymbalta don't make him silly like the neurontin did. I have to say, I was kinda enjoying the silliness. On another positive note, since WC paid for Chantix, Reed is now on his second week of being smoke free!! wooohooo!
I hope everyone is well, and having pain free days. Hugs to all
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Old 10-14-2008, 09:56 AM #2
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Rita,

I am so glad that Reed's Doctor is being so thorough and that all of Reed's results look good!! I hope all goes well with the Vascular Doctor and that Reed can have the SCS trial soon!! I am keeping you both in my thoughts and please keep us all updated when you can!

Please tell Reed that I said "Congratulations on being 2 weeks Smoke free - that is great and keep up the good work!"

Love, Alison
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Old 10-14-2008, 10:14 AM #3
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Thanks Ali.. you're such a sweetheart! I hope you are feeling better. gentle hugs to you!
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Old 10-21-2008, 08:27 AM #4
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Smile Another Update LOL

Well, Reed went to see the vascular specialist on Friday, and they ran a dopplar scan and he has no arterial problems at all! woohoooo! The vascular doc said that he definitely has a "classic case" of RSD and that he was recommending to the PM doc, and to WC that Reed have the SCS done as soon as possible. We saw the PM doc later in the afternoon on Friday (after getting lost a couple of times in the city) lol and he sent the request to WC for SCS while we were there. He is hoping to hear from them this week and do the trial in the next week or two. We're hoping and praying that it's approved and that it works!
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Old 10-21-2008, 05:05 PM #5
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Rita,

I am glad to see that the vascular testing went well. I'll be hoping and praying with you that Reed gets approved for the SCS trial, and that it will work for him.

Best regards,

EJ
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Old 10-25-2008, 02:15 PM #6
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Rita, I will cross my fingers that you get a quick approval for the SCS from WC. i also hope the trial goes well & provides Reed with some pain relief. I like my SCS but I didnt get the pain reduction I had prayed for. I still wouldnt give it up. Even though in the next couple weeks I have to go have it fixed because I was stupid. I have a fluid leak & its shorting out at the generator. They have to take it out & dry out the connetions & the generator & put it back. Its a mess! You just have to be so careful when you have an SCS. I wasnt careful enough. I was lucky though that I did not move my leads. That would have been major. SO if Reed gets it make sure he follows the instructions.I really didnt have a choice I was restraining my dog. SO it was accidental. Take care of yourself (yes you too being a caregiver is tough).
hugs, Denny
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Old 10-26-2008, 08:31 AM #7
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Quote:
Originally Posted by dennyfan View Post
You just have to be so careful when you have an SCS. I wasnt careful enough. I was lucky though that I did not move my leads. That would have been major. SO if Reed gets it make sure he follows the instructions.I really didnt have a choice I was restraining my dog. SO it was accidental. Take care of yourself (yes you too being a caregiver is tough).
hugs, Denny
Thanks, Denny I'm going to make sure Reed doesn't lift a finger! lol
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Old 10-25-2008, 11:56 PM #8
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Hi Rita and Reed, My Dr. switched me to Lyrica and Cymbalta. They were both positive changes. Lyrica works better on the pain and I feel so much more like myself. Hope all goes well with the WC and the SCS. I don't have one. In the beginning I used a tens unit and that helped along with meds. Take care, Loretta
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Old 10-26-2008, 08:35 AM #9
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Originally Posted by loretta jewell View Post
Hi Rita and Reed, My Dr. switched me to Lyrica and Cymbalta. They were both positive changes. Lyrica works better on the pain and I feel so much more like myself. Hope all goes well with the WC and the SCS. I don't have one. In the beginning I used a tens unit and that helped along with meds. Take care, Loretta
Loretta, thank you and I agree..the lyrica definitely keeps Reed from feeling groggy. Reed's PM doc called us Friday evening and said WC has agreed to pay for the trial. He sent in a separate request for the leads (he says they are more likely to agree that way) and he's pretty confident that WC will approve that request too, because their doctor looked at Reed's medical records and agrees that the SCS is medically necessary. He may have the trial on Thursday!
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"Thanks for this!" says:
kejbrew (10-27-2008), loretta jewell (10-26-2008)
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