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CRPS

Neck of Steel CindyNNeck of Steel Cindy Posts: 1,064
edited 06/11/2012 - 8:23 AM in Back Surgery and Neck Surgery
I had a followup with my doctor today, as we have been doing some testing to figure out why my left arm is continuing to get weaker. I had left arm weakness and pain with my original injury, and my surgeon told me a few weeks ago that my weakness now is permanent and coming from neck problems I had. since this is getting worse, not staying the same, I question if it can be called "permanent", so I had an EMG done. This came back absolutely normal. What? that totally surprised me until the doctor explained today that an EMG will only show if there is something outside of the cord causing the problems, i.e. nerve roots. The test will provide no information on problems stemming from cord damage. So it didn't really surprise the doctor that the EMG was normal, because my nerve roots have all been completely decompressed.

She took a look at my left arm today and noticed that it is red, which is something that has been ongoing for a very long time. Looks like I have a sunburn. It is also warmer to the touch than the other arm. This led to more questions, and she thinks I have Complex Regional Pain Syndrome, or something like that. I do have pain in my arm, but I am able to deal with this, at least for the most part. It is the weakness that concerns me. We talked about doing injections, and I am starting physical therapy again, concentrating on the arm strength. She had an anesthetist come in while I was there and talk to me about a ganglion block, and also the possibility of doing an SCS. This is something I have never even considered, and it totally blows me away to think that I may need that.

Why would an SCS help with weakness? Does it stimulate the nerves enough that the information flows from the cord to the arm correctly? There is definite damage to the cord in the c-spine, so does an SCS reprogram the interrupted signals? I'm just a little confused about this. I thought SCS were used to help control pain only.

Apparently with CRPS, one can lose muscle strength and the skin color differences along with some swelling is what leads them to think this is what is going on with me. If any of you have this, please let me know what your symptoms are, and how you are treating it.

We talked about going back to work. I have been trying to do some work for a couple of weeks, and it is causing increased neck tightness and pain. I also worked on sewing a dress for my daughter and ended up in excruciating spasms and pain for a couple of days afterwards. how am I supposed to go back to a desk job? I just can't look down for any period of time without causing more pain to my neck. the only way I can be on the computer now is by using a laptop, sitting back in my recliner with my neck supported with a cervical pillow. Laptop is positioned that I can hold my head straight without looking down. I can sit and type this way without too many ill effects, but that is not conducive to an office atmosphere. I just don't understand how I am going to be able to work as an executive secretary or office administrator again. In discussing this with my doctor, she suggests that I train for a different career, stating that she is not too excited about me doing a desk job. It is just not going to work with my neck issues, and cord damage causing the leg issues, and the bladder issues. My entire body is just screaming at me and I am so frustrated and fed up. Going back to school does not sound fun to me!

The doctor sent in a request for a new c-spine MRI, so once WC approves this I will get it done and then see the doctor again to determine what to do next. I start physical therapy again tomorrow. That takes half my day--It is a one hour trip each way, 1-2 hours in therapy. By teh time I finish therapy I am always wiped out and not worth anything for the rest of the day. I just want a normal life again.

Sorry for the ramble and whine tonight. I just need a little support.

Cindy

Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
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Comments

  • Cindy

    Send me a PM. I can help with this.

    "C"
  • Cindy ramble on thats what we are here for. You have already gone through so much. I would not even think about work at the moment. I know its hard but ttry not to get frustrated , because this will cause you to tense up your spine. Just relax. >:D<

    Angie x :)
  • cindy i am sorry your doc thinks you have crps. even if its not crps it doesn't change the pain and suffering u are going through. we all deal with pain on a daily basis and i have good days and bad ones also. i will do for u what helps me through a bad time - prayer. i hope prayer and the thought of having prople care about your situation may bring some moments of peace in your life. i wish i had a answer for u ? also with the amount of hardwar u are packin around my hats off to u if you are able to return to work.
    GOD BLESS ALL,
    KC
  • I am so sorry to hear that you are still having so many problems. I don't know anything about CRPS and I can't help with that, but it sounds like you have a doctor that cares and listens to you. Hopefully she can find some solutions...and at the very least be persistent in her efforts to do everything in her power to help you get better.

    I can definitely understand your wanting to get back to work and having that goal is excellent. I also sit at a desk. For the most part I use the computer, but also have tasks where I need to look down at my desk for long periods of time. At 1 year post-op it was still very difficult. I couldn't even read a book for more that 15 minutes without my neck getting tight and sore...and I would get these vibrations in my lower left leg. It's much better now....the vibrations are very rare now. I hope and pray that the same improvements will happen for you in time.

    Take care Cindy, we're here, thinking of you and wishing the best for you. You're so strong and this road has been much longer and more difficult for you than most of us.

    Sending hugs and good vibes your way! >:D< >:D<

    Sending the nerd dude too.... hopefully your doc is one of these :B and doing lots of this :? to eventually get you to here <:P
  • so sorry they think you have it.
    i also am not to familar with it either.
    PM "C" like she said. she is one smart cookie and has gone through ALOT..

    hang in there
    hugs
    terri >:D<
  • Cindy,
    Catch up with me in chat. I have some experience with crps. They use to call it RSD but have since changed the name of it.
  • thanks to all who have posted support for me. I did PM C and she was able to give me some information. Thank you "C". It is so nice to have the encouragement from my friends here.

    I am feeling much more positive today. This whole past 2 years has been a rough ride, but I'm still taking it one day at a time and I will get better. I must and will keep having hope.

    I had a 2 hour physical therapy session today and it went well. the only way I can lift my left arm enough to get good range of motion is with hte assistance of a pully system. I was able to do 5 minutes each on two different exercises with the pully, and that feels good. PT said that doing this will help to prevent a completely frozen shoulder. now I just have to get my husband to make a "pully" so that I can do the exercises at home.

    Thanks again for all the support.
    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
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