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 09-06-2009, 01:01 AM #1
yiisd yiisd is offline
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Quote:
Originally Posted by krank View Post
I just found this forum and I am so thankful for it. I was diagnosed a year ago with crps1 in the right ankle after a work injury . I have had five epidurals, aggressive PT and have been on neurotin 1800mg for the last 6 or so months. It looked like I was going into remission until about two weeks ago I felt some of that needles and pins thing going on and it didnt stop. The next I knew the little demon came back with a vengance and has started to climb up my leg. I have been eating vicodin like candy. My PM wants to install an SCS. A boston scientific model. Has anyone heard of this type and is there any other treatment (beside drugs) that can help ?
Have you tried physical therapy UNDER ANESTHESIA? If you haven't, you should ask your pain management doctor if that might be helpful.
I had this for one month and I now have some (very little, but some) use of my hand & fingers. After the surgery, the orthopedic wanted to amputate from the wrist down because he said it would not function & would be in the way. I chose the Inpatient Intensive Physical Therapy Under Epicural Anesthesia for 4 weeks. It was painful & a lot of work ..... but I have both hands and 10 fingers. I would call that success. Of course I still have the pain & everything else that goes with RSD, but I am blessed to still have my extremities.
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Old 09-06-2009, 01:25 AM #2
hope4thebest hope4thebest is offline
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Hi Krank,
To my original post, I forgot to mention that what I like to do (hiking..exploring beaches, walking through the redwood trees) is what I like to do if I could!! Those are the things I USED to love to do..
I hope one day in the near future we'll all be able to do the things we use to do!!
Hope4thebest xox
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Old 09-06-2009, 12:19 PM #3
SBOWLING SBOWLING is offline
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Hello Krank and welcome to NT.
I have full body RSD and I had a Boston Scientific SCS for about 2 years. I had it removed last November it wasn't helping. They are very posture sensative. When I turned my head it turned up the stimulation when I sat down it turn off the stimulation. Boston Scientific tried to get it adjusted properly but they were unable. Medtronics makes one.

I see an RSD specialist in Philly he told me I shouldn't have done the SCS to begin with. In his opinion they don't help RSD and it didn't help me.

I see a chiropractor and that really helps as does exercise in water. We are weighless in water and there is no pain.
I wish you the best of luck and if you want to talk more about the SCS just PM me.
Take care,
Sherrie
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Old 09-06-2009, 11:16 PM #4
krank krank is offline
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First of all I want to thank all of you. Its great to know that I have found a place where there are so many caring people that know exactly what I am going through. With all the advice and wisdom I have received I am going to find a second opinion. If anyone knows of a great pain management Dr. or a great neurologist in the minnesota or north dakota area we would deeply appreciate any names or suggestions. I am not ruling out finding the best combinations of medications. Trying hbot and anything else that is relatively noninvasive first. I'm not quite sure about a second round of epidurals. I figure if they really didn't work the first time ( with one of them being totally botched) I believe I learned my lesson there. We heard of a ketamine treatment but we are not sure what that involves. I am interested in the hydrotherapy and any personal stories on how anyone got into remission. I am blessed that I was diagnosed as quickly as I did and that the little demon is confined to my right leg. I cant even imagine what it would be like to have this through out my body. My wife and I will be praying for you all. Bless you all sincerely krank
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Old 09-09-2009, 08:11 AM #5
bassman bassman is offline
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I will try to keep this short. You have had a lot of great responses.

As an RSD sufferer with an SCS, my mantra to others has been: exhaust other treatment options first.

Implanting the Spinal Cord Stimulator is surgery. There are all of the normal potential complications of any surgery, there is a recovery and rehab time, and when all is said and done, it is in there permanently. There are some changes and restrictions to your life with the SCS implanted.

This is a big step. Many have had great results, and some others regret ever doing it. Do not rush in. Take plenty of time to research this. If you look in this site alone, there have been LOTS of discussion threads on this subject - pro and con.

Welcome to our group. Good luck in your fight!

Mike
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