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 07-04-2011, 08:58 AM #1
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Patti_Christmas Patti_Christmas is offline
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Join Date: Feb 2011
Location: Eaton Rapids, MI
Posts: 146
10 yr Member
Patti_Christmas Patti_Christmas is offline
Member
Patti_Christmas's Avatar
 
Join Date: Feb 2011
Location: Eaton Rapids, MI
Posts: 146
10 yr Member
Default Hi Everyone!

Sorry I've been MIA for awhile, but I've been extremely depressed. The SCS isn't working, I haven't been able to get to Cleveland yet (rescheduled once again ), and am in constant pain.

Two weeks ago, I had another CT scan of my knee. Due to the SCS, an MRI was out of the question, so I had to do a CT scan. This "scan" was special, as the radiologist had to inject stuff in my knee that would make stuff show up. My doctor called and told me I need to get with my orthopedic surgeon ASAP because the scan showed extensive joint damage. I knew something was wrong, so now I find out what the ortho is going to do on the 15th of July. I have spoken with my surgeon's PA that implanted the SCS, and have decided that if I need surgery for the knee, they will coordinate with the surgeon and remove the SCS at the same time.

I have completely the phsycial and water therapy with no improvement. Honestly, I think the therapy might have caused some of the problems with my knee joint.

I've been doing Laser Accupuncture because I can't have the "traditional needles" due to my metal allergy. This managed to give me a few hours of relief. This doctor has perscribed a new machine - it's a Heat Wave, and it works like a TINS unit. So far, I like it. I am questioning now why the doctors were in such a hurry to do a SCS as opposed to this machine or even a TINS unit. I fear this is a question that will never be answered honestly.

I am not pleased with MedTronics because I haven't heard from them since the last program attempt months ago. I called and left them a message that it didn't work, and haven't heard a word since. Nice customer service if you ask me. Even though it doesn't work, you would think they would call and check on things.

I am still battling with the swelling in my stim area. The pain still feels like a 6" steel rod.

I do have some good news though - I had my SSI Disability Hearing on June 1st. I got my "letter" last week, stating a favorable decision. Now it's just wait and see.

The kids are doing all right. Typical teens - they don't want to move off the couch, and say they are bored. If you give them a task, they seem to get "un bored" rather quickly.

So, how is everyone else doing? I hope things are going well, and everyone gets relief somehow!!
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