← Return to CRPS - anyone suffering with complex regional pain syndrome

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@finny4606

Momoffour, my name is Finny4606. I was diagnosed with CRPS about 3 years ago, in both legs, and it’s very painful every single day. Then I was referred to an orthopedic familiar with CRPS, and he said I was misdiagnosed and he referred me to a spine specialist and he said I needed spine and back surgery but it’s no guarantee that the surgeries would provide pain relief, maybe giving 30% relief, I am waiting for the Mayo Clinic to decide if they’re accepting me. Depending on their answer, I’m thinking pain pump or dorsal ganglion root stimulator or even pain meds. Good luck.

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Replies to "Momoffour, my name is Finny4606. I was diagnosed with CRPS about 3 years ago, in both..."


When doctors disagree, it’s important to pin down why each one thinks it’s a particular diagnosis and identify how the disagreement could be resolved. . It’s also important to insist on being a part of that conversation and to ask the physicians to probe more deeply why the diagnosis is being made or changed before being asked to make decisions about which treatment to have.

In my daughter’s experience with cancer treatment at Mayo, the Mayo team did exactly that. In my other daughter’s experience with CRPS in California, it has been a lengthy and difficult process.
But while we needed to nudge the conversation into existence, we did learn quite a bit. For example, an orthopedic doctor with knowledge of CRPS ordered a triple phase bone scan to determine her CRPS diagnosis in combination with her objective symptoms and her description of pain.
For spinal conditions, perhaps a doctor might order a CT or MRI scan to see whether there is a condition that aligns with symptoms and type of pain. But however they determine a diagnosis, that should happen with a reasonable and reliable degree of certainty before recommending how to treat your condition .
There might be other tests or clinical examination that should be done if there are other diagnoses under consideration.

In addition, treating CRPS might take a different path than treating a spinal condition. The placement, for example, of a spinal stimulator makes a big difference as well as the type of programming used. With CRPS, some physicians use DTM programs (targeting glial cells) instead of standard programs used for spinal conditions.
I hope you can find a clinical team that can explore your questions and resolve this with you soon.
Best of luck.