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Ankle - Regional Pain Syndrome

Posted , 7 users are following.

bonniedel
bonniedel

My name is Bonnie. My husband is 38 years old and broke his ankle 5 years ago. He still has pain in his ankle after all this time. He describes it as a dull ache. If you push in behind the ankle bone itself it hurts him greatly. We have seen 4 orthopedics(including the Hospital for Special Surgery), 2 podiatrists and 4 neurologists. No one can figure out why he has pain. His MRI'S are clear and his EMG didn't show any nerve damage. He has tried PRP therapy, acupuncture (twice),chiropractor (twice), myofascial release massage, many different anti-depressants, nerve pain medications, sural nerve release surgery(some doc told us it would help) and cartilage removal surgery. He does not have any hardware in his ankle. The poor man is beside himself. We do not know what to do next. They did suggest it was Regional Pain Syndrome. Not sure what to do next.  

0 likes, 9 replies

9 Replies

  • Princess1970
    Princess1970 bonniedel

    Posted

    Bonnie del,i m sorry to hear about your husband's pain.

    I would start with a nerve study test, after my surgeon suggested it may be chronic regional pain syndrome he sent me to a neurologist who did a nerve study and was able to validate the diagnosis and from there I went to occupational therapy and nerve stimulator. I wish you well

    • bonniedel
      bonniedel Princess1970

      Posted

      Hi Princess, he has an EMG done. It turned out negative. You still think they need to do a nerve conduction test? Why do you think any of the 4 neurologists didn't suggest that?

      And what is a nerve stimulator?

    • Princess1970
      Princess1970 bonniedel

      Posted

      I'm sorry it took so long to reply,but yes a nerve study can tell you if it is crps or something else I'm very shocked a doctor has not done one yet . A nerve stimulator sends electric current to the area affected by crps and it distracts you from the pain.i have had mine 3 months now.i have had alot of drawbacks from its incision sites and it is causing me pain where the battery pack is but it is giving about 50% relief in my hand.. I hope the best for you and you husband

    • walter59
      walter59 Princess1970

      Posted

      Hello, the nerve study needs to be done to determine if it is type 1 or type 2. With type 1 there is no nerve damage. I have crps type 1 and it is harder to get a diagnosis.
  • toshi81218
    toshi81218 bonniedel

    Posted

    I don't think it is CRPS  because the severity of the pain would be unbearable.  And you will need a series of medicine to manage the pain. But it is hard to diagnose.  I hope to god your husband does not have that.  
  • walter59
    walter59 bonniedel

    Posted

    Hi Bonnie, I too went thru a similar situation. I lived with the pain in my right thigh for 20 years, saw about 50 DRs, paid thousands of dollars only to be told they didn't know what to tell me! My family DR sympathised for me and gave me pain  meds. About 2 years ago my thigh began to atrophy. My DR said we had to find out what was wrong with my leg before I lost the use of my leg. I finally found a Neurosugeon that said it was CRPS. But it was too late, I now can barley walk and am unable to work. You really need to find the right DR before it becomes irreversible. Good Luck!
  • eva96035
    eva96035 bonniedel

    Posted

    Bonniedel,

         I am so sorry to hear that your Husband has been living with such pain for such a long time. When you say that your husband doesn't have any hardware in his ankle, does that mean that at one point he did have hardware? Are they thinking that it might be CRPS/RSD Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy ? From what I understand my son was recently diagnosed with CRPS/RSD, and he said it was really hard to describe what the pain feels like but he said you could feel it deep inside , He has Tremors in his right hand and sometimes it will be like the parts that are affected have been in the freezer and I know some people say that it feels really hot. My son has lost a lot of feeling and temperature sensitivity like he will think that cool water is warm and he is really hypersensitive to rain, wind, and anything touching him especially his leg. When he has problems it's usually his left leg or his right arm but the senses have affected his whole body except for his head with the way he says his nerves feels burning,stabbing pain and he is greatly affected with his sleep he doesn't sleep like he used to and he doesn't really take any high powered medication yet but he takes several things for swellling, he was swelling so bad at one point that his legs have stretch marks where he would swell so big and then go down. Does he have swelling in his ankle ? I'll be awaiting your response and get back with you as soon after as I can in the mean time God Bless your family and I'll be praying for you and your Husband.

     

  • andrea11745
    andrea11745 bonniedel

    Posted

    Hi there

    So sorry to hear your hubby is having such a tough go. Does his foot change colour and/or temperature compared to other one?

    Sounds like you've exhausted many options but I would find a good pain specialist and clinic who can do a sympathetic lumbar block. Even though there is no definitive test for RSD/CRPS, the block can be treatment and diagnostic to some degree in that if he gets some relief from it we can assume it's sympathetic nervous system dysfunction and that certainly indicates RSD/CRPS..

    If so, he has a long road ahead, although sometimes knowing the devils name and face can help him fight.

    All the best of luck and let us know how you make out.

  • SDGirl
    SDGirl bonniedel

    Posted

    Bonnie,

    ?In most cases the pain of CRPS is extreme. There are cases where it is dull and/or vise like as in my case. It is hard to diagnose CRPS this far out from the injury.

    ?Do you remember, did it start about the same time as the fracture? Was there extreme color change during that time? Have they ruled out arthritis?

    ?

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