I'm terrified of future surgeries spreading CRPS

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I am new to this message board and would like some feedback regarding surgeries and the spread CRPS. In May of 2014 I had surgery to correct a hammer toe, and two claw toes, along with removing a neuroma nerve on my right foot. Everything went great and I was out walking every morning for the first time in over twenty years. I was feeling great, enjoying the fresh air, sunrise, and the chorus of birds. Then without warning the pain came back putting an end to my walking. Believe it or not, it took two years and four doctors to determine that the nerve had grown back. So on April of 2017 I had surgery again, but this time around it turned into a nightmare.

I had my heart set on getting back out on my morning walks, but what I got was worse pain followed by deep depression. For me the summer of 2017 was the summer of endless tears. By Fall I had gone through physical that didn’t really make that much difference. It was then that I first heard about Complex Regional Pain Syndrome and the doctor gave me a series of 3 nerve blocks. When they totally failed the doctor said that there was nothing more that could be done medically, and suggested therapy to learn to live with it.

 

I have not had the therapy, but mentally and emotionally I’m in a much better place. As much as I wish I could, I can’t go back and decide against having the surgery. And now today I scared because I need knee replacement surgery on my right knee. Actually scared is putting it mildly, it’s more like I’m terrified!! Would the CRPS spread and my whole leg feel like my foot does? I’d like to hear about others experiences regarding this.

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4 Replies

  • Posted

    Hi.

    First off, I am so sorry that you have CRPS and are in pain.

    CRPS can spread if a new injury occurs.

    I only had it in my foot until I was hurt in physical therapy and the CRPS spread up my leg.

    I now know that any surgery or injury is going to become a new sight for CRPS. I need 2 crowns but know that they will fail and the teeth will have to be pulled maybe causing CRPS in my mouth. So, I am choosing to just leave them be.

    Personally I would not risk it, the knee surgery.

    Take care.

    Tracy

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  • Posted

    Hi Rose,

    I totally understand your justified fear of additional surgeries, I've had RSD/CRPS since 2003 and unfortunately had several issues that required major surgery. At this point I have decided and discussed with my GP and family that I will never have surgery again. I have been legally disabled for 15 yrs and even small injuries can easily cause a flare up of pain or even spread to previously unaffected areas.

    Most pain specialists do not really understand the complex issues and the best treatment I have found is with progressive doctors who use alternative and complementary medicine in addition to more traditional methods. It is crucial to find and stick with a GP who is willing to manage all your care and take the extra time (usually an extended appointment time several times each year) to give advice after really listening to what issues are of most concern to you.

    I'm speaking of patient centered care, which can be very hard to find... but is a treasure beyond measure with complicated health issues. You may have a family member or friend who can help with this, or have to act as your own advocate. Be wary of Pain Management docs who are really anesthesiologists, read as much as you can to be an educated patient and make decisions knowing the disease is not understood by many surgeons and you have to educate them on your particular issues.

    I wish you all the best luck and can recommend meditation, stretching and very sparing use of pain medication. This disease is always with you and positive people and situations can make a huge difference in the way it effects your daily life. I keep busy and try to always look for ways I can serve others, even in small ways.

    ((HUGZ)) Susie

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    • Posted

      Thank you Susie,

      I agree with you about all of the above. As a nurse who ended up with full-body CRPS, I was absolutely astounded to find that doctors who state in their online profiles that they treat CRPS/RSD, can still be thinking, diagnosing, and treating as if it were still the 1990's. More and more, there is compelling evidence that you just can't treat chronic pain of any sort in the way you'd treat acute pain; and how much more so in the case of CRPS, in which any additional trauma such as injections and surgeries, are probably going to result in you lighting up like it's the 4th of July. I was luck enough to find Dr. Jay Joshi in northern IL (anesthesiologist, but one of the good guys), and he diagnosed me with Centralized Pain. Ketamine infusions along with behavioral, dietary, and gentle exercise modalities, have so improved my quality of life. I am still completely ambulatory on all but the worst of days, and now have much better quality of life than any of my other healthcare providers thought I would, under the circumstances.

      Thanks for your wise words!

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  • Posted

    Hi Rosebbie,

    Yes; any additional trauma (and surgery is just a scheduled trauma, when you think of it) can cause worsening and/or spreading of your CRPS.

    Avoid it if at all possible.

    And your doctor sounds like:

    1) He thinks CRPS is sympathetically-maintained pain only

    2) He may not understand the concept of Centralization of Pain/Central Sensitization

    3) Is unaware of the huge amount of research in the last 10 years that has really begun to change the game. Especially, that managing your level of systemic inflammation can help a lot!

    I'm so sorry your Doc told you that you are out of options. You have LOTS of options, including low-dose naltrexone, Ketamine infusions, and medications that block histamines, help to moderate depression while acting as anti-inflammatories, etc., etc..

    I am a nurse with full-body CRPS. It took me two years to get a diagnosis, and the first 3 doctors I saw after my mild symptoms in one lower leg spread like wildfire after a knee surgery, basically told me I was making the whole thing up: Even the color and temperature changes were put down by one Doc as the result of high anxiety. Ouch!

    Hang in there. Do some online research about the inflammatory, autoimmune, and central nervous system causes and effects that come along with the CRPS diagnosis. And then comes the challenge: Convincing your doctor. If you can't convince him, it's time to find someone else to help you manage your case.

    Wishing you the best... Happy to answer any questions, anytime! smile

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