Quote:
Originally Posted by gailr
Hello all and God Bless Us: New to posting so forgive for any blunders.
Just diagnosed and seeking help. In May 2016 had rotator cuff surgery and although knew one of worst rehabs, quickly knew after four weeks pain and stiffness were outside the norm. I was doing my twice weekly PT and exercises at home but started developing a very cold hand and pain and burning at the joint in back of my shoulder and a swollen hand/fingers/wrist. Five months plus later my PT is still working with me because my range of motion is not what it should be; he does not know when I can be released.
Background: At six weeks I complained to my surgeon and response was simply to move my arm more. I persisted and researched and asked about CRPS and was told maybe but didn't think so. My PT thought I had a lymphedema like condition but not lymphedema. Then my surgeon had me have an MRI of my wrist which showed an ECU dislocation with subsheath tear which he later said I didn't have (I had never done anything to cause this). I went to a second surgeon who said I either had CRPS or a cervical issue and to not worry for now about the wrist. Of course this was all very confusing. I went to a Pain Center two weeks ago and the P.A. says I have CRPS but they don't have much experience with it and wants me to have a ganglion stellate block and go on gabapentin. I am hesitant because of all the research I have done which doesn't show the blocks work for long and an expert (Dr. Pradeep Chopra) doesn't do them anymore. Gabapentin has so many common side effects which I already have without meds like lightheadedness and swelling. Dr. Chopra is in RI and I am in MD. Check him out on the internet - awesome YouTube Videos and he and Dr. Getson out of NJ are very knowledgeable). Tried to see Dr. Getson but such a backlog till maybe March 2017 or so can't wait.
This has been a very painful frustrating journey as you all know - I cry everyday because it is so difficult to find a doctor who knows much and is willing to individualize care and spend time with you. I am to visit the pain center again this week for more explanation (and probably more confusion) Will stay in touch. Does anyone know what definitely works - would love suggestions? One thing is to keep moving - which I am doing although painful. Have also contacted a mental health professional to try to keep me going and not totally despairing. I also soak my hand in epson salt which relaxes it a bit and have been changing my diet to avoid inflammatory foods but this has only been a couple of weeks so the verdict is out.
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The previous posters already gave you good advice and information. I agree that it is important to keep moving with the PT and a PT home program. It is important to find the proper balance for you. Too much or too vigorous can just make it worse. Moist heat, TENS, gentle stretching, and desensitization helped me get through the PT. I am sensitive to many drugs, but I will give them a chance.
There are a variety of treatments available. I travel to Philadelphia, PA for ketamine infusions every three months. Since you were already told that your group does not have much experience with CRPS, ask them for the names of doctors, universities, clinics or hospitals that do.
In the meantime keep doing your research and know that there is hope.
Shay
10-10-2016, 08:06 PM
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